tag:blogger.com,1999:blog-21833803172764692592023-11-16T02:35:22.958-08:00With a hopeful heart...Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-2183380317276469259.post-81062224102357960352012-08-31T17:43:00.003-07:002012-08-31T18:36:51.030-07:00PlaygroundBraeden loves to go to the park. He enjoys climbing to the top of the highest play structure then yelling,"Mommy...mommy look at me." Ofcourse I am watching nervously...hoping that he doesn't fall and hurt himself. He is a fearless little climber. I think the fact that Braeden was born with health issues has made me even more diligent in trying to protect him from harm. I have come to realize that I cannot protect him from everything,the scrapes and bruises of life will come with their own lessons. Life isn't about how many times we fall, it is about learning to get back up again.It occureed to me when he took a tumble the other day,that God must see us through similar eyes...<br />
<br />
<br />
Running on the playground<br />
My son took quite a fall<br />
He pulled himself up carefully<br />
And then began to call...<br />
"Mommy...Mommy...Mommy..."<br />
"I'm hurt...I'm hurt...hurt<br />
I run to him...he's on the ground<br />
His face covered in dirt<br />
I find him with his hands outstretched<br />
His eyes are filled with tears<br />
I scoop him up and hug him as<br />
I try to soothe his fears.<br />
It's okay I tell him <br />
(As mother's tend to do)<br />
Now let’s go wash that ouchie<br />
And get a band aid too.<br />
I do not reprimand him<br />
For leaving mommy's sight<br />
I simply hold him in my arms<br />
And whisper..."It's alright"<br />
And then it did occur to me<br />
That God must feel this way<br />
When his child is hurting<br />
He whispers..."you okay"?<br />
In a world where things do go wrong<br />
In a world of struggle and hurt<br />
I sometimes find...I'm on the ground<br />
All covered up in dirt<br />
But I can get up by myself<br />
I say with just a sigh<br />
I'm strong enough to stand myself<br />
I will not even cry.<br />
And so I brush off all the dust<br />
And stand...to my great boast<br />
Why must we fall to realize<br />
What really matters most?<br />
And so I watch each step with care<br />
Can I avoid a fall?<br />
But living life so carefully<br />
Is not living at all.<br />
I do not have the answers <br />
(I may not understand)<br />
But this I know for certain<br />
He's there to take my hand.<br />
The playground of life lies before me<br />
At times it's hard to see<br />
That open arms are waiting<br />
To love and comfort me.<br />
If I should fall tomorrow<br />
If I should fall today<br />
The one who holds eternity<br />
He still says…<br />
"You okay"?<br />
<br />
~Stephanie Husted<br />
<br />
~For I, the Lord your God, will hold your right hand, saying to you,"Fear not I will help you. Isaiah 41:13<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEL85mqzsab8z3Ukt1ZYp00gebIWGgnCWbeUKEve3KhgDLNBz2p9NeQrSeSNGK53DA9FB9EcfAO1XPoVm0lFIY8v1dx0854MN0nOjCGpAcLgJdRWUoB__lI0RgCm7uNx9y9oKY9oCgGEE/s1600/221b23b7d8a942dc4ed2114e31954ad6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEL85mqzsab8z3Ukt1ZYp00gebIWGgnCWbeUKEve3KhgDLNBz2p9NeQrSeSNGK53DA9FB9EcfAO1XPoVm0lFIY8v1dx0854MN0nOjCGpAcLgJdRWUoB__lI0RgCm7uNx9y9oKY9oCgGEE/s320/221b23b7d8a942dc4ed2114e31954ad6.jpg" width="320" /></a></div>Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com1tag:blogger.com,1999:blog-2183380317276469259.post-84637746019835945022012-02-13T23:04:00.000-08:002012-02-13T23:06:05.384-08:00One in One HundredOn November 6th 2004, my son Braeden was born with Hypoplastic Left Heart Syndrome. He has had three open heart surgeries, two heart caths, a g-tube placement, and countless echos and blood draws. He has recently been diagnosed with Kabuki Syndrome(which is also extremely rare) Despite so many obstacles, Braeden is a happy seven year old today. One in every one hundred children will be born with a heart defect.<br /><br /> <br /><br />You came home with a big red heart,<br /><br />That you had made at school,<br /><br />You wrote your own name in the middle,<br /><br />You asked me...mom isn't it cool?<br /><br />"It's beautiful," I said to you,<br /><br />As pride swelled in my chest,<br /><br />"When it comes to paper hearts,<br /><br />Yours really is the best."<br /><br />The glitter and lace,<br /><br />A mirrored reflection,<br /><br />So carefully placed,<br /><br />In sincere perfection.<br /><br />I think about your "real" heart,<br /><br />On the inside, where others can't see,<br /><br />It won't ever be "perfect",<br /><br />You have a CHD.<br /><br /> <br /><br />You are that one in one hundred,<br /><br />We'll never know what to expect,<br /><br />Our lives have been forver changed,<br /><br />By the words: heart defect.<br /><br /> <br /><br />A precious baby girl was born,<br /><br />In nineteen eighty-four,<br /><br />Her mother surely held her,<br /><br />Not knowing just what was in store,<br /><br />Her hopes and dreams were shattered,<br /><br />By the words that would be spoken,<br /><br />Her tiny...brand new...baby girl,<br /><br />Was born with a heart that was broken.<br /><br />Things were different in that time,<br /><br />Options weren't as clear,<br /><br />Although her child did not live,<br /><br />She is a pioneer.<br /><br />She named her daughter Stephanie,<br /><br />You can still read her story today,<br /><br />She received the first baboon heart,<br /><br />We call her "Baby Fae."<br /><br />She was that one in one hundred,<br /><br />Her family decided to give,<br /><br />So medical science could progress<br /><br />And future heart children might live.<br /><br /> <br /><br />A mother and father get out of their car,<br /><br />Taking their son's tiny hand,<br /><br />The little boy shifts restlessly,<br /><br />Too young to understand.<br /><br />Mommy has fresh flowers,<br /><br />Dad has a shiny new balloon,<br /><br />He doesn't know they're for his brother,<br /><br />Whose young life was taken too soon.<br /><br />His small hands touch a well worn stone,<br /><br />He says, "wish you were here."<br /><br />His parents kneel beside him,<br /><br />Wiping away every tear.<br /><br />Their child was one in one hundred,<br /><br />And now they are living apart,<br /><br />Countless children die each year,<br /><br />Due to a broken heart.<br /><br /> <br /><br />The technician tells her to relax,<br /><br />The gel should still be warm,<br /><br />She rubs her pregnant belly,<br /><br />Discomfort has become the norm.<br /><br />Her husband smiles back at her,<br /><br />She gives him a quick wink,<br /><br />Soon they will have their answer,<br /><br />Will it be blue or will it be pink?<br /><br />The tech starts to look a bit nervous,<br /><br />In a flash their are doctors and chatter,<br /><br />She looks at her husband with tears in her eyes,<br /><br />Asking, "what do you think is the matter?"<br /><br />They have become one in a hundred,<br /><br />Lives now changed by CHD,<br /><br />The child they have been waiting for,<br /><br />Will soon need surgery.<br /><br /><br />She is the miraculous,<br /><br />Inspiring through strife,<br /><br />The doctors then weren't certain,<br /><br />If they could save her life.<br /><br />She paved the road for many,<br /><br />Now she helps others cope,<br /><br />She has grown up with CHD,<br /><br />She gives each of us hope.<br /><br />She is one in one hundred,<br /><br />A life with endless plans,<br /><br />It's nice to know that someone,<br /><br />Truly understands.<br /><br /><br />We are the one in one hundred,<br /><br />Helping the world to see,<br /><br />We share, reflect...remember,<br /><br />One voice for CHD.<br /><br /><br /> ~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com1tag:blogger.com,1999:blog-2183380317276469259.post-54233704053613511792011-06-19T19:50:00.000-07:002011-06-20T19:19:31.048-07:00Princess Lindsay remembered...As many of you know, the Dean family had to say goodbye to their beautiful 3 year old daughter Lindsay yesterday. I have been following Lindsay's amazing story since before she was born. Our hearts grieve for the Dean family tonight. Lindsay will be dearly missed.<br /><br />And then God called his princess home,<br />And grasped her tiny hand,<br />While those now left behind must ask,<br />Why He had such a plan.<br />When Jesus whispered Lindsay's name,<br />She smiled, I am sure,<br />For heaven holds no sickness,<br />And no pain to endure.<br />When a little child leaves us,<br />Our first question is...Why?<br />Why not let this child live?<br />Why did she have to die?<br />How can such a thing occur?<br />Why couldn't she stay longer?<br />We've prayed for her continuously,<br />Oh Lord help her grow stronger,<br />And still she leaves this place on earth,<br />So unexpectedly,<br />To join so many others,<br />In sweet eternity.<br />Her life has taught us many things,<br />Her journey touched us so,<br />But why Lord must this happen?<br />Why did she have to go?<br />If God could answer in a prayer,<br />If I could faintly hear,<br />His answer like a whisper,<br />So softly in my ear,<br />Perhaps I'd find some comfort,<br />Although she couldn't stay,<br />If He could only speak to us,<br />Perhaps this is what he might say:<br />My Beloved Child,<br />Your pain has reached the heaven's child,<br />Please don't think I don't know,<br />How very much it hurts inside,<br />To let your child go,<br />She sits with me this very day,<br />In heaven up-above,<br />Surrounded by my angels,<br />But held still...by your love.<br />I know you do not understand,<br />And yes, I hear your cries,<br />I ask you to consider,<br />Some of the other "whys"<br />Why did her smile light the room,<br />Like a rainbow's perfect hue,<br />How could she touch the hearts and lives,<br />Of everyone she knew.<br />Why does her courage guide you,<br />In ways you can't convey?<br />Why does her life remind us,<br />To love..to hope...to pray.<br />Heaven may seem far away,<br />Days and months and years,<br />A longing...just to see her face,<br />And wash away your tears.<br />Have faith child...when I tell you,<br />You'll never be apart,<br />You hold a piece of heaven,<br />Forever in your heart.<br />Goodbye seems all to final,<br />"She's gone" just isn't true,<br />She lives on in each of us<br />In what we say and do.<br />Why did we know this miracle?<br />Who taught us how to see?<br />Why did we get a chance to meet,<br />A Princess named Lindsay?<br />Sweetest child... special gift,<br />Loved beyond all measure,<br />Only for a little while,<br />For us to know and treasure.<br />Hold onto that most joyous day,<br />A tear,a smile, a sigh,<br />When she is in your arms again,<br />You'll never say...goodbye.<br /><br />Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com5tag:blogger.com,1999:blog-2183380317276469259.post-16852730889629691182010-08-23T08:52:00.000-07:002010-08-24T05:19:36.132-07:00When I Became a Heart Mother<a href="http://whenlifehandsyouabrokenheart.blogspot.com" target="_blank"><img alt="Every Heart Has a Story" src="http://i37.tinypic.com/124dkm0.jpg"/></a><br />I could say that my life would be forever changed the day the plus signed appeared on my home pregnancy test, or the day that the ultrasound tech told us that we were having another little boy, or most especially the day when we were told that our unborn child had a devistating heart defect known as Hypoplastic Left Heart Syndrome. Monumental...life changing days to be sure, but the day my own heart changed, was the day...that I became a heart mother.<br />Braeden came into the world on November 6th, 4 weeks early(and perhaps that was a good thing because he was already almost 9 pounds)I had just left my OB appt. when I started feeling my first contractions. "But I am not ready yet", I thought. Most parents anticipate their child's arrival with great anticipation, but because I knew what my son would have to endure...I just wanted to keep him safe inside of me. Within a few hours there was no doubting the fact that I was indeed in labor, and so we headed out to U of M.<br />I can still remember clearly the fear and anxiety I had on that day. Would I be able to hold him? Would he be breathing alright when he was born? Would he be a candidate for surgery? Would he have additional complications like the high risk OB had warned me about?<br />My labor went smoothly, and Braeden was whisked away within seconds...sadly I did not get to hold him after he was born, as he was having some breathing difficulties.<br />The first time I got to see him was a few hours later...he was beautiful with a head full of dark hair...he was intubated, and I can remember crying...wondering how I could prepare myself for all that was to come.<br />Five days later, we prepared to hand him over for his first open heart surgery. They allowed us to hold him for a little while beforehand, and there were many tears and prayers on that day.<br /> The next few weeks seem to be a blur of little to no sleep,pumping,holding Braeden,trying to spend time with our older son Colin,barely eating,praying,hoping, rejoicing at every small victory and so on...<br />Braeden was ready to come home three weeks later, it wasDecember, a few weeks before Christmas, and we felt very blessed indeed. We had watched as a few of the families at the hospital lost their children, and though we worried...we were thankful.<br />Purell became our new staple at home, as we adapted to a new normal of life with a heart child. There were very few visits(cold and flu season)and very little sleep, as Braeden was very colicky. I can remember rocking him for hours as he cried...worrying that he was working his tiny heart too hard. A few months later we found out that he had reflux, and were able to start him on Zantac.<br />Spring came quickly, and with it...another heart surgery. At 5 months old we handed Braeden over once again, this time for his Hemi-fontan.<br />Although he had some issues with a collapsed lung, and an allergy to Captopril, things went realatively smoothly, and we were home in about 2 weeks.<br />I got to meet so many wonderful families during the next few years, rejoicing in their triumphs, and grieving with those who lost their precious children. I also started to write. All of the turmoil,hope,hardship,joy, uncertainty, and unexpected blessings...came to life though words. It has truly been like therapy for the soul.<br />When Braeden was two, we faced his last planned open heart surgery....the Fontan. I think this one was the hardest, and I let him leave my arms with tear-filled eyes. Although this surgery went smoothly, his recovery was very bumpy, and there was a brief period of time that they thought we might lose him. After a few bumps in the road, he came home ten days later.<br />As Braeden continued to thrive from a cardiac standpoint, he has had his share of issues with other things...sensory problems,eating,fine and gross motor skills, and Oh those darn ear infections! We have been though every aspect of genetic testing,neurology appointments,kidney specialists(Yes both of his kidneys are quite small, and one is located in his pelvis area)Ot,PT,speech,MRI's,swallow studies,upper GI's,echo's,caths, five sets of ear tube,adenoid removal...the list could go on and on. I sometimes joke with my husband that we still have a few specialists to check off of our list.<br />Yes we have lost friends through the last few years, we have even been appalled to hear people we care about say negative things about our choices, but we know that God has always had a plan for Braeden's life. A purpose that we cannot even begin to imagine. I have watched my older son grow into such a loving and compassionate young man, and friends,family,even strangers cannot help but notice how amazing he is with his little brother.<br />I do not believe I could possibly be the person I am today...had it not been for the trials that we have faced. Had it not been for the gift of my son Braeden. Life changed forever...the day I bacame a heart mother.<br />God will reward you for all of this", someone once said to me, I just smiled...looked her in the eyes and said,"He already has".<br /><br /><br />If I could write your story son,<br />(Oh how I wish I could)<br />I'd pen for you a journey,<br />That held nothing but good.<br />Wouldn't it be perfect?<br />If that job belonged to me?<br />I think I'd change a thing or two,<br />While writing your story.<br />I'd write of lasting happiness,<br />The storms would stay at bay,<br />I"d write your story carefully,<br />I'd have so much to say,<br />You'd know not of a hospital,<br />Or days in ICU,<br />You'd only know of simple things,<br />Like other children do.<br />The sun would rise...Yes everyday,<br />And shine to make you smile,<br />You'd never know a day of pain,<br />You'd never face a trial.<br />You'd dance to music all your own,<br />While watching Sesame Street,<br />I'd tuck you into bed each night,<br />And life would be complete.<br />I'd write of picnics in the park,<br />And winters in the snow,<br />I'd write of laugher,joy and love,<br />I'd sit and watch you grow.<br />I'd proofread till my eyes grew tired,<br />Each line and paragraph,<br />And let my pen fall to the floor,<br />Then stop to hear you laugh.<br />And never would I question,<br />What sick children must face,<br />Never would I have a need,<br />To ask God for his grace.<br />I'd likely live oblivious,<br />Of what it means to be...<br />A member of this "special club",<br />I call my heart family.<br />If I could write your journey son,<br />Perhaps I'd not convey,<br />The message that HE longs to share,<br />"We must live for today".<br />Your story has been written,<br />Each stroke penned with great care,<br />He knows each thought I have of you,<br />He's numbered every hair.<br />No, I can't write your story,<br />Although I wish I could,<br />I must heed what HE says to me,<br />"All things work for the good".<br />If I could write the life you'd live,<br />I'd fail...don't you see?<br />I'll leave it in much better hands,<br />He'll write it perfectly.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com8tag:blogger.com,1999:blog-2183380317276469259.post-92090603436831765342010-08-06T12:47:00.000-07:002010-08-06T13:03:09.197-07:00A day in my shoes...If you have a special needs child, and have escaped all of the negative(and sometimes well-meant remarks Congratulations...and perhaps this post doesn't even effect you. I try to be the "better" person, but at times being human I let my temper get the better of me. This has been just such a week...<br />I won't go into all of the details, but I will say this much, as the mother of a medically and mentally fragile child I fight constantly to acquire the resources that Braeden needs from day to day. It really hurts to have someone in your own family say "You knew before you had him that it would be hard on your family in all aspects...this includes financial. If you cannot afford to get him everything he needs you should have thought about that before. This was followed by the stinging words..."You had a choice". Ouch...did I? I took the best care of myself during my pregancy, no smoking,no drinking,vitamins,ate healthy all of the things that most mommies to be do to ensure a healthy pregancy. When this person meant choice...I can only assume that they meant I could have decided not to have my son. I am angry and hurt over these comments, but alas this is not the first time such things have been said. Praying for peace and above all "understanding".<br /><br />I wonder if things would be different,<br />If you spent a day in my shoes,<br />Seeing life through different eyes,<br />Which road do you think you would you choose?<br />Would you understand the way I feel?<br />Would you judge me with little remorse?<br />Tell me that you'd make wiser choices?<br />Or show me a much better course?<br />Would you try to have compassion?<br />Would you ask honey what can I do?<br />I wonder if things would be different,<br />If you spent a day in my shoes.<br />Most days I know that I am lucky,<br />Blessed beyond all measure,<br />The Lord said where your heart is,<br />You'll surely find your treasure.<br />You will find that although I'm quite thankful,<br />I know that someday we could lose,<br />And if you cannot comprehend,<br />Rejoice that you don't wear my shoes.<br />Ofcourse I know we all have shoes,<br />And hardships we must bear,<br />At times you say I seem too busy,<br />But that doesn't mean that I don't care.<br />And though our paths go different ways,<br />In ways I cannot even name,<br />We can still share many things,<br />Even though our shoes are not the same.<br />I've learned what's most important,<br />Are things we can't hold with our hands,<br />Like faith and love, and courage,<br />Like dreams and hopes and plans.<br />I wonder...can you see it?<br />I pray God leaves you clues,<br />And if you should need a reminder,<br />Please come walk a day in my shoes.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-49008418143172709722010-06-27T09:18:00.000-07:002010-06-27T09:22:09.697-07:00Whenever I get sad...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH-GAiCN3-rJvcsL4kpA8-xlMF-EovRWDEvZr1PCV4XoZOcS5R0duFIZQNFLJ5csyPFn0Y6cpEX2IxKoCbunqT_IRALSxg30yjZu-1sPq60Za74mMjr9Wp8rraUYNe3jXvdbXa_XMwjPM/s1600/100_1533.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH-GAiCN3-rJvcsL4kpA8-xlMF-EovRWDEvZr1PCV4XoZOcS5R0duFIZQNFLJ5csyPFn0Y6cpEX2IxKoCbunqT_IRALSxg30yjZu-1sPq60Za74mMjr9Wp8rraUYNe3jXvdbXa_XMwjPM/s320/100_1533.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5487489121380554866" /></a><br />There you are making me laugh!<br />Make a crazy face I said, and you complied :)Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-82230569481928788102010-06-25T08:42:00.000-07:002010-06-25T09:05:36.265-07:00It never ends...and I'm thankful<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1rE2PaGJhIBEI_f2wdniya-BvfCVMjq_kwNT8d-P5ZwOw7o88haw0T_-GBd_UGisSRpyy373qoQwTSC90CM-nNLS4aKLAHeB_PTVqnXqsi_yN74-MVuirNEkMx0RiFNj2t9YQiHLj4uY/s1600/100_1532.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1rE2PaGJhIBEI_f2wdniya-BvfCVMjq_kwNT8d-P5ZwOw7o88haw0T_-GBd_UGisSRpyy373qoQwTSC90CM-nNLS4aKLAHeB_PTVqnXqsi_yN74-MVuirNEkMx0RiFNj2t9YQiHLj4uY/s320/100_1532.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5486743086460676866" /></a><br />"It just never ends", I told my husband the other day. If it's not insurance woes, it's another ear infection, if not something going wrong with one of the cars, then it's Braeden's liver enzymes coming back suspiciously high...always something. I should certainly learn to savor the non- complicated normal days.<br />Let's start with early May. Braeden caught a nasty virus which caused high fevers for more than a week, the pediatrician ordered bloodwork and a chest X-ray. The bloodwork showed unusually high liver enzymes, which she noted were probably due to whatever virus he had. He weathered the virus okay, but then caught pinkeye. A few days later we all had the virus...along with the pinkeye...(fun fun)<br />We were all homebound for more than a week(emptying our cupbards, wearing sunglasses in the house, yes...were were all quite a sight..lol)Colin and Braeden seemed to get over the pink eye realatively quickly, but I caught such a bad case that I lost my sight for several days. I actually scheduled my first visit with an eye doctor, and he gave me some steroid drops which helped. It has been more than 6 weeks, and my vision is still not 100 percent normal, but much better.<br />The second week in May, I took Braeden to Grand Rapids to be evaluated for an intensive feeding program. He is 5 years old, and I still cannot get him to eat much. We will be placed on a waiting list, and once accepted it will be an 8 week program. I am still not certain how were going to pull it off, so your prayers are appreciated. Third week in May, my doctor informed me that I need to have an echo right away, as the last one that I had showed mitral valve prolapse, along with moderate mitral valve leakage. They also noted that my aortic and tricuspid valve are leaking. Starange that I would never have known, had I not decided that we all needed echos after Braeden was born. End of May...a much needed break. Braeden graduated from pre-school :)<br />First weeks of June...ENT visit. It was decided that due to Braeden's numerous ear infections, he will need to have his adenoids removed. This is scheduled for July 2. We also had his bloodwork redone, and the liver enzymes are still quite high. What could this mean? Well his pediatrician doesn't want me researching things on the internet and going into a panic. It is quite possible it could mean gallstones, ofcouse there are other things it could indicate as well. We will have them tested again in a few weeks, and are hoping that they go down. If not, we will schedule a liver ultrasound within the month. It is not easy living with the what-if everyday...sometimes I think I am driving myself crazy. Praying for more peaceful...normal...quiet days. I promise I will appreciate them even more when they get here!<br /><br />Today I felt a little sad, <br />About the things we face, <br />Today I guess it slipped my mind, <br />In all things there is grace. <br />The pieces of my life don't seem, <br />To fit the way they should, <br />My "Guide to Life" went missing, <br />(I know that can't be good) <br />And if I had a pick-up truck, <br />Then it would not be long, <br />Before I turned my life's story, <br />Into a country song. <br />And life sure is a puzzle, <br />With no picture to go by, <br />Perhaps I'm wasting precious time, <br />By pondering every..."why". <br />I should collect each piece God gives, <br />While knowing His plan is concealed, <br />And have the faith that someday, <br />All things will all be revealed. <br />And when a new storm heads our way, <br />And I am left spinning and guessing,, <br />Life's ordinary moments, <br />Are God's encripted blessing. <br />Sometimes I lose momentum, <br />Sometimes I fall behind, <br />My attitude takes two steps back, <br />And I fear I am losing my mind. <br />I wonder...can I do this? <br />I wonder am I strong? <br />I thought I was so capable, <br />But what if I was wrong? <br />The puzzle lays before me, <br />All scattered where I sit, <br />I pray God gives me wisdom, <br />To make the pieces fit. <br />And what if life's most precious gifts, <br />Don't fit with sheer perfection? <br />What if we must prepare the way, <br />For such an intersection? <br /><br />I look at all the puzzle pieces, <br />Scattered in my hand, <br />And whisper ever silently, <br />Please help me understand... <br />The image comes together, <br />The picture grows more clear, <br />It's only through adversity, <br />That we can face our fear. <br /><br />And when each piece has found it's place, <br />I'll sigh in sweet reflection, <br />Life's purpose can be clearly seen, <br />In silent...imperfection. <br /><br />So I will face this day with hope, <br />Not give into defeat, <br />And trust this puzzle called my life, <br />Will someday be complete. <br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com2tag:blogger.com,1999:blog-2183380317276469259.post-32309881145347050532010-05-08T08:52:00.001-07:002010-05-08T08:52:55.674-07:00Fevers, and earaches, and pinkeye...oh my!The last two weeks have been filled with one sickness or another, beginning with Braeden having high fevers for about a week.He developed an ear infection shortly therafter, followed by pink eye, which I have now(pretty misearable for sure)The good news? His cardiology appointment went great! There are no concerns at all as far as his heart is concerned! I hope you all have a wonderful Mother's Day(and I hope my eyes clear up in time for more appointments next week :)<br /><br />What does it mean to be a mother?<br /><br />It's that very first moment,<br />He's placed in your arms,<br />A wrinkled red face,<br />Filled with so many charms,<br />You can't help but cry,<br />(As a new mother knows)<br />You've been waiting so long,<br />Just to count all his toes,<br />Then visitors come,<br />Bearing gifts that are blue,<br />And they laugh, and snap pictures,<br />Saying, "He looks like you."<br />And in just a few days,<br />(Ahh... the joy and the fun)<br />You'll be on your way home,<br />With your beautiful son.<br /><br />What is it like to be a heart mother?<br />Again, it's that moment,<br />You hold your child close,<br />And cry secret tears,<br />That a heart mother knows.<br />In just a few days,<br />Maybe less,maybe more,<br />You'll be letting him go,<br />Asking, what lies in store?<br />And as your child lays,<br />In a small isolette,<br />You think to yourself,<br />I must not get upset,<br />And as family arrives,<br />You try hard to stay strong,<br />But your tired eyes say,<br />That this all seems so wrong.<br />You know what is coming,<br />Though your still not prepared,<br />He will leave your safe arms,<br />To have his heart repaired.<br /><br />What does it mean to be a mother?<br />It is nights with no sleep,<br />It is feedings and spit up,<br />It is watching him roll,<br />And then finally sit up.<br />It is knowing this child,<br />Depends on you most,<br />It's those everyday milestones,<br />in which, you can boast.<br />And yes... there is crying,<br />(At time's it's quite loud)<br />But when he says,, "Mama".<br />He makes you so proud.<br /><br />A heart mother...<br />Ahh.. yes little rest,<br />As the monitors beep,<br />And you begin to question,<br />Is there such thing as sleep?<br />And you can't go home yet,<br />And your kid's ask each day,<br />"Will we see you soon mommy?<br />Can you come home and play?<br />Real soon... you promise,<br />Yes...I miss you too",<br />And then people ask,<br />How you do what you do.<br />And you stroke his forehead,<br />And his fist is unfurled,<br />And you know for this child,<br />You would give all the world.<br /><br />A mother...<br />Time passes quickly,<br />Soon he's off to school,<br />And before you know it,<br />Hugs just aren't "cool",<br />He's a teenager now,<br />With dreams of his own,<br />And one day it hits you,<br />My child, has grown.<br />And though you are proud,<br />For all he's achieved,<br />Life passed more quicly,<br />Than you could have believed.<br /><br />A heart mother...<br /><br />You've always strived to live each day,<br />As if it were the last,<br />As the mother of a heart child,<br />You know things can change fast.<br />You've seen so many familes,<br />Endure things you can't understand,<br />And while you trust that God is good,<br />Sometimes you just don't understand.<br />But you go on, because you must,<br />God chose you for him, and no other,<br />Your stronger that you could imagine,<br />You have become a heart mother.<br /><br />Every mother...<br />And every mother's journey,<br />Begins on that day when,<br />She knows with everything she is,<br />A mother, she has always been.<br />Crayon marks cover all the walls,<br />Muddy prints scatter the floor,<br />Toys and messes everywhere,<br />And yes... laundry galore.<br />I must have the best job that there is,<br />(Despite all the clutter and mess)<br />My children.. they remind me,<br />Life shouldn't be such a stress.<br />Each and every day we have,<br />(To laugh, to hug, to play)<br />Is a memory I'll always have,<br />And nothing, can take that away.<br />I wouldn't trade a moment,<br />Or all that they've taught me to see,<br />I'm blessed to be a mother,<br />It's more than I'd dreamed it could be.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-46612958377659758262010-04-18T11:48:00.001-07:002010-04-18T11:48:57.643-07:00The Woman in the MirrorThe Woman in the Mirror<br />By Cheryl Veenstra<br /><br /><br />I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.<br /><br />There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.<br /><br />The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path........It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their 'family life' as normal and happy as possible.<br /><br />A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?<br /><br />Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.<br /><br />I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com0tag:blogger.com,1999:blog-2183380317276469259.post-71894436230020599862010-02-11T11:43:00.000-08:002010-02-11T11:47:27.023-08:00Happy Heart Week<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnCs3S3NnGeBpkmRee5fefu0O2GsdEflRiuzFIXcGfXe7aDEKR3Jeo0BiPzba05UMs5Q3QxGf_0V5dweE2b00jz3uwfGI9RrwQRlyODdFBK4zhMjZ4-72Prj2V1oVeFgabIUOwY4iYu5s/s1600-h/bove.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnCs3S3NnGeBpkmRee5fefu0O2GsdEflRiuzFIXcGfXe7aDEKR3Jeo0BiPzba05UMs5Q3QxGf_0V5dweE2b00jz3uwfGI9RrwQRlyODdFBK4zhMjZ4-72Prj2V1oVeFgabIUOwY4iYu5s/s320/bove.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5437074143384826626" /></a><br />Braeden and his surgeon (Our hero) Dr. Bove<br /><br />My child reached for me today, <br />and I wanted you to know... <br />that as I spend each day with him, <br />and get to watch him grow, <br />as he cuddles close beside me, <br />wraps his fingers in my hair, <br />I know he would not be here now, <br />had it not been for your care. <br />Your hands rebuilt the tiny heart, <br />that beats within his chest. <br />Had others never seen his scar, <br />they never would have guessed, <br />that a man could take but half a heart, <br />and help a child to live, <br />we thank God for you everyday, <br />and all the joy you give. <br />This journey is uncertain, <br />but, with hope we may succeed, <br />we would not tread this path at all, <br />had it not been for your lead, <br />Braeden is a miracle, <br />(He's cute and sweet and smart) <br />We thank you for our precious son, <br />with such a special heart. <br /> <br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com3tag:blogger.com,1999:blog-2183380317276469259.post-72678456086584258882009-12-20T21:13:00.000-08:002009-12-20T21:53:46.521-08:00Tag Award..<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI0ByY4c7iY5wfJvyuDnwxwqt5T9OcoH3vdaA7U21GLEGRSVVO_QUadElU98J0erFL3-WlPYs7kkhyphenhypheniYes2rsy4VT_z3AHSbP6iNn9GONPR8n_ZKVyOM46hS6AFyN0Gb4hJwB7Blk_5CY/s1600-h/tag.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 164px; DISPLAY: block; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417558164018866002" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI0ByY4c7iY5wfJvyuDnwxwqt5T9OcoH3vdaA7U21GLEGRSVVO_QUadElU98J0erFL3-WlPYs7kkhyphenhypheniYes2rsy4VT_z3AHSbP6iNn9GONPR8n_ZKVyOM46hS6AFyN0Gb4hJwB7Blk_5CY/s320/tag.jpg" /></a><br />Stef from "when Life Hands You a Broken Heart", has nominated my blog for a "Tag" Award. Now I must tell you seven things that you may not know about me, and then tag 7 people.<br /><br />1.While doing research for our family tree, my aunt discovered that we are descendants of President Andrew Jackson.<br />2.I started writng poetry when I was six, ofcourse most of my early poems had alot of frog,bog,log and fox,socks,rocks in them.(can you tell how much I loved Dr. Seuss when I was growing up?)It wasn't until my child was born with a life-threatening heart condition that my poems became more heartfelt.<br />3.Lost is my favorite tv show, I never miss it!<br />4.I am really quite shy in person...just ask those who know me :)<br />5.My mom came very very close to naming me Jolene, after the Dolly Parton song of the same name!(Luckily my dad didn't get his way or I might be Apollo-yes, he loved all things in regards to space travel)<br />6.I would love to publish a book, but the fact of the matter is...I am a terrible procratinator.<br />7. I struggle with the why's of life constantly, but my faith in God is what keeps me going...everyday.<br /><br />I should have added the fact that I am technologically inept. I am still not sure how to add the blog names as a link:)<br /><br />http://jilliansommers.blogspot.com/<br /><br />http://schroedermatters.blogspot.com/<br /><br />http://laurensheart.blogspot.com/<br /><br />http://lindsaysheart.blogspot.com/<br /><br />http://wodzisz.blogspot.com/<br /><br />http://babygirlbutcher.blogspot.com/<br /><br />http://keepingupwithchristian-heartbaby.blogspot.com/Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com1tag:blogger.com,1999:blog-2183380317276469259.post-40359151014975763242009-12-11T13:22:00.001-08:002009-12-11T13:36:29.984-08:00A doll for Christmas...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEjwb38W3nKTnWYU8g_cYgP9f2_1fJ-mYqVXGd9jgMGXjg5KWScwoRIE22c3X8avM3vjWUW5LaosGBcevfQ4yoeQGk1SpYo-vWNoAdqnjT7bizf7CF8BUhBTqPB12REFaMpZfOI14NMKQ/s1600-h/baby.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 70px; height: 135px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEjwb38W3nKTnWYU8g_cYgP9f2_1fJ-mYqVXGd9jgMGXjg5KWScwoRIE22c3X8avM3vjWUW5LaosGBcevfQ4yoeQGk1SpYo-vWNoAdqnjT7bizf7CF8BUhBTqPB12REFaMpZfOI14NMKQ/s320/baby.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5414094108064787698" /></a><br />So many Christmas's ago,<br />When I was little too,<br />I'd wait so ever patiently,<br />My turn would come...I knew...<br />The presents were ripped open,<br />The best was saved for last,<br />A doll...my doll...yes every year,<br />The same as each year past.<br />We'd go into our playroom...<br />(we dressed our babies there)<br />And play a game that we called "house..."<br />"What will my baby wear?"<br />Baby Alive came one year,<br />And I'd mix up that slimy green goo,<br />Baby alive always opened her mouth,<br />And she'd happily swallow and chew.<br />No feeding tube to contend with,<br />No pump to beep..." all done",<br />A spoon held to her willing mouth,<br />Wow...feeding time was fun!<br />Baby Soft Sounds came next year,<br />She cried when she wasn't held tight,<br />Luckily...I could still sleep,<br />(Mom turned her off each night)<br />No wires held me powerless,<br />To hold my child near,<br />No doctor's rounded daily,<br />I had nothing to fear.<br />Next came... "Baby All Better",<br />With thermometer...to play,<br />Just a little cool water,<br />And her fever went away.<br />No countless calls to the hospital,<br />No...trips to the E.R.,<br />A splash of water...all was well,<br />No need to drive so far.<br />Rarely did our game include,<br />Our babies getting "sick",<br />But if and when...this did occur,<br />A shot...would do the trick.<br />Out came the Fisher Price medical kit,<br />The doctor would make it okay,<br />It had all of the tools we needed,<br />To take any owies away.<br />Motherhood was easy,<br />It ended for the night,<br />By tucking our sweet babies in,<br />Then kissing them..."goodnight".<br />Perhaps life just isn't that easy,<br />And childhood dreams go unfiled,<br />Locked away for a season,<br />Refound in the eyes of a child.<br />No this isn't the life I imagined,<br />While rocking my doll with a smile,<br />I never imagined that being a mom,<br />Could come with a heartwrenching trial,<br />But God chose him just for me,<br />And God must know me best,<br />I am the mom of a heart child,<br />Loved and richly blessed.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com5tag:blogger.com,1999:blog-2183380317276469259.post-87587237004332158882009-12-04T11:50:00.000-08:002009-12-04T12:04:59.118-08:00Crying over blue toes...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSL1Wp88Q3pZaqHFqNq-GyHSbeJUakAi8Luydk2rk5_qt7ZhF9moszLmTag72469VEUZrgmO7AhNJjjpew1mOZGUP0yaFfGBrQ1UycN-fJnsXxn2ebEY65szCQNihOlKcxNKfURXENNSQ/s1600-h/100_1015.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSL1Wp88Q3pZaqHFqNq-GyHSbeJUakAi8Luydk2rk5_qt7ZhF9moszLmTag72469VEUZrgmO7AhNJjjpew1mOZGUP0yaFfGBrQ1UycN-fJnsXxn2ebEY65szCQNihOlKcxNKfURXENNSQ/s320/100_1015.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5411474415453596994" /></a><br />Every once in awhile it hits me yet again...out of nowhere. Strange how that can happen. One moment you are layering a fabulous lasanga, the next you are feeling the tears well up in your eyes, because your child just put on his own coat, or tried to tie his own shoe...or...well don't get me started. How often I think to myself...he shouldn't be here, and I just quicky reprimand myself for thinking such a thought. Why shouldn't he be here? <br /><br />Because we almost lost him twice.<br />Lost him...I cannot even comprehend that.<br /><br />Monday was one of those days...<br />All was well, Braeden was taking a bath filled to the hilt with foamy white bubbles, and in the very next instant...bam...tears.<br />Why was I crying? Because his toenails were blue. No they weren't really any bluer than normal, but it hit me right then, for some weird reason...he isn't better.<br />We will always face the fears, we will always wonder... he isn't fixed...he will always have this heart defect. I think that it hits me especially hard after the death of another heart child. Evan passed away this week, he was seven years old.<br />I read somewhere that we cannot cope, if we have no hope. I digress...<br />You may find me crying over pancakes one day, or a sappy Hallmark commercial or even over a bubble filled tub.(over blue toes)but I hope you will never find me saying that I have lost all hope. Please keep Evan's family in your prayers...we are getting ready to leave for his visitation, and I cannot imagine what his family must be going through.<br /><br />No matter what happens...<br />Our lives hold surprises...<br />One thing remains constant...<br />The sun always rises...<br />When trials surround us...<br />When things are just fine...<br />One thing is certain...<br />The stars will still shine...<br /> <br />Today...we received the most troubling news...<br />The doctors told us...we must choose...<br />A chance at life... all we can give...<br />Our hope...our prayer...let our child live.<br />You see...they told us something's wrong...<br />The heart within you...is not strong...<br />What will we have to put you through?<br />Oh Lord...I don't know what to do.<br />And the stars will still shine...<br />By the light of the moon...<br />And if God be willing...<br />We'll be holding you soon.<br /> <br /> <br />Today...we welcomed you at last...<br />As time...just seemed to move so fast...<br />Before we knew it...here you were...<br />I still cannot stand what you'll have to endure.<br />I held you close...and stroked your hair...<br />Wishing...that...life were more fair.<br />No matter what happens...somehow we will cope...<br />I'll give you a chance...I'll hold onto hope...<br />And the stars will still shine...<br />In the midst of our pain...<br />And the sun shines it's brightest...<br />Only after the rain.<br /> <br />Today...we'll have to let you go...<br />I thought...I was prepared...<br />Today...I'll let you leave my arms...<br />Your heart must be repaired.<br />And God must be right in this room...<br />(To prevent me from falling apart)<br />And I can only pray...Dear Lord...<br />Please let them fix...his heart.<br />And the stars will still shine...<br />When the storm grows anew...<br />You hold our son's life...<br />And our trust is in you.<br /> <br />Today...an example...of God's loving grace...<br />We're on our way home...we're leaving this place!<br />This hospital room...was our home for awhile...<br />It has seen every tear...it has held every smile.<br />Homeward bound...Lord can we do this?<br />One day at a time...I know we'll get through this.<br />And the stars will still shine...<br />And we've prayed for this day...<br />And we see peaks of sun...<br />Through the clouds dark and gray.<br /> <br /> <br />Today...some friends... so very dear...<br />Have had to face...our greatest fear...<br />They lost their child...how can this be?<br />My hearts breaks for...this family. <br />I still see his face... as I whisper his name...<br />And then it sinks in...things will not be the same.<br />And as we watch our child thrive...<br />We wonder why their child...didn't survive.<br />And the stars will still shine...<br />Through the anguish and pain...<br />And the light that they left here...<br />Will always remain.<br /> <br />No matter what happens...<br />(What can we expect?)<br />Of life with a child<br />With a heart defect?<br />And "defect" doesn't...<br />Seem quite right...<br />I prefer...precious...<br />In HIS sight.<br />And the stars will still shine...<br />And perhaps one will fall...<br />Your that one shooting star...<br />That surprises us all.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-514867569347238352009-11-29T05:57:00.001-08:002009-11-29T06:12:28.404-08:00A Special Recipe...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQx9mU-2GNiHhuKEPwrJHAJEr3TaJiW_I2lMkGJR75OkqFmMqv4wqmYLxVaqdEC92IleP6xsSkH9QBztLjETAbIj6uz5kRKIKb-ErdhnXET4yxUT-xkZ4RY0V0S9BA20CzGLxSufI-ElQ/s1600/100_1059.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQx9mU-2GNiHhuKEPwrJHAJEr3TaJiW_I2lMkGJR75OkqFmMqv4wqmYLxVaqdEC92IleP6xsSkH9QBztLjETAbIj6uz5kRKIKb-ErdhnXET4yxUT-xkZ4RY0V0S9BA20CzGLxSufI-ElQ/s320/100_1059.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5409525484070989986" /></a><br />I didn't try turkey...<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU3AsJc5HWRdJBrwCnZHi-_Y2DLD3tsEHq1d294PtAC5jQPnWO9c3leTdoBt2idWL2W769zs-F6iEafO6JbN3VNoCvi2QRkTkyjQG6T8rQs93X8JGEf0S8YBgN6-JpjoFXL5qFSYUHZwE/s1600/100_1062.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU3AsJc5HWRdJBrwCnZHi-_Y2DLD3tsEHq1d294PtAC5jQPnWO9c3leTdoBt2idWL2W769zs-F6iEafO6JbN3VNoCvi2QRkTkyjQG6T8rQs93X8JGEf0S8YBgN6-JpjoFXL5qFSYUHZwE/s320/100_1062.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5409525276765761074" /></a><br />Potatoes or pies...<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh40vlvIE_OzgTCTIg2p-xz1KdpIhNtjJvs8Y1iVjPuApU7K0nVbVslJUAWZtdpiofbnirRguobGIF6RvKUShXTv9BEzfHjj0goJYvOFEpNf5hv3QcGi75MsT2zLvgqfUarHgsbRb-KFEo/s1600/100_1063.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh40vlvIE_OzgTCTIg2p-xz1KdpIhNtjJvs8Y1iVjPuApU7K0nVbVslJUAWZtdpiofbnirRguobGIF6RvKUShXTv9BEzfHjj0goJYvOFEpNf5hv3QcGi75MsT2zLvgqfUarHgsbRb-KFEo/s320/100_1063.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5409524973837412450" /></a><br />I'd much rather eat...<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWHDhTxaFivRPXfu80MVVe6VyUlhmSs7zRESnqEv7RNYcm6EF2XCxa46oB0DKH2Oa1nzEn0SjExFwEIwL7kOogiM8IPq-IOr72Vx7SNd7T5bJQyZNtxu4YpB5NVOLatMWGacBT-x9UE9M/s1600/100_1068.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWHDhTxaFivRPXfu80MVVe6VyUlhmSs7zRESnqEv7RNYcm6EF2XCxa46oB0DKH2Oa1nzEn0SjExFwEIwL7kOogiM8IPq-IOr72Vx7SNd7T5bJQyZNtxu4YpB5NVOLatMWGacBT-x9UE9M/s320/100_1068.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5409524729411653970" /></a><br />My own "special" surprise...<br /><br />He wouldn't eat the good stuff on Thanksgiving, but he loved the taste of this yummy concoction :)<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpFY7cXexSXdjF2JMeKUCV-eOIT2i-iFZsRIZws9hjJwKAT886h_s0m8fq_O6GdgjpcxvyyHyjRfxVMGuUTaXCrfVX7Ug92ORvZi1smGT_TZME6ee65jrtwzONqlknhq2rZwUe_EODYw/s1600/100_1066.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpFY7cXexSXdjF2JMeKUCV-eOIT2i-iFZsRIZws9hjJwKAT886h_s0m8fq_O6GdgjpcxvyyHyjRfxVMGuUTaXCrfVX7Ug92ORvZi1smGT_TZME6ee65jrtwzONqlknhq2rZwUe_EODYw/s320/100_1066.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5409526694981516418" /></a><br /><br /><br />Hope everyone had a Happy Thanksgiving!<br />On another note a heart family very dear to us, lost their son Evan on Friday, please keep them in your prayers.Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com0tag:blogger.com,1999:blog-2183380317276469259.post-72403393999875852812009-11-19T09:25:00.000-08:002010-07-14T16:46:45.953-07:00The Little Engine that COULD...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw9Gv2iOzQQ2VZb9Er2OiKur4BKQ5zpnp0RXb74153NcLl8vnQpXsgcBln7LsuBpsH-OPp-pXmz7UMuPQSXp7tWHeYhlOuBetOFedO9lJ4xzcon3YZCpM4qYcJWn5a_BhPd2S_TphtJQ/s1600/100_0698.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw9Gv2iOzQQ2VZb9Er2OiKur4BKQ5zpnp0RXb74153NcLl8vnQpXsgcBln7LsuBpsH-OPp-pXmz7UMuPQSXp7tWHeYhlOuBetOFedO9lJ4xzcon3YZCpM4qYcJWn5a_BhPd2S_TphtJQ/s320/100_0698.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5405868085837181346" /></a><br /><br />I read him my favorite book yesterday, I think that he liked it.<br />Chug...chug...chug...puff...puff...puff...ding dong ding song...<br />The little train rumbled over the tracks, she was a happy little train.<br /><br />I rub his little back, as I turn the page, he seems very concerned about the plight of this happy blue train. Nobody wants to help her, and she just wants to get to the other side of the mountain to deliver her gifts to everyone on the other side. No one thinks that it is possible for her to perform such a task. I can certainly say that I see Braeden's life in this story. Like so many others, a doctor that I had never met took my hand, as he tried to tactifully bring up the fact that there were "other" options. "You are too far along to terminate the pregnancy here, he said, but there are a few states where it is still legal. Can you imagine?<br />I spoke with another mom whose son was diagnosed with HLHS when Braeden was about 15 months old. He wasn't walking yet, or talking much, or doing all of the things that your average 15 month old was doing, but his smile, and determination became my most constant reminder to never give up. Life is worth fighting for...how often I allow myself to forget. I sent this new heart mom his picture, and I shared with her our story, and the story of oour other heart buddies that were doing well. She emailed me a few weeks later to thank me, and also to let me know that she had terminated the pregnancy. Her words left their mark on me,"We decided we want a healthy child".<br /><br />I had a hard time with her choice of words.<br /><br />Sometimes I find myself sad...perhaps I have no right.<br />My child is here, while others are not. I desire normalcy...and find fear in uncertainty...<br /><br />I can imagine watching shiny perfect trains going back and fourth up and down the steep mountain.(Forgive my analogy here)<br />As the mother's sit chatting happily,and sipping their hot tea...I watch my child struggling to make it up the first incline, that the others seem to do with little effort.<br />I am watching, my feet ready to go help him should he fall, or give him a gentle nudge should he recquire one.<br />I listen...but in a way, I am not, and could not ever be a member of their club. I know that they did nothing wrong, nothing to deserve my complacency, but we have little in common.<br />"Look Marjorie, said the youngest of the mothers. ""Do you see how my Johnny goes up and down the mountain with such ease, he is strong and mighty like his father". "Oh and so he Ameila, said Marjorie. "Why my Aron has three blue ribbons for his speed". They gaze my way with a mixture of pity and kindness, as I wach my little one just making it up to the second incline. "You shouldn't worry so, one of them says to me,"Everyone does things at their own pace". I smile and mouth the words,"thank you". Their kindness is there, and yet a part of me feels like I will never belong.<br />If you do not live in the shadow of death, you cannot comprehend it. I could share countless stories about friends, as well as family who do not understand where I am coming from. The uncertainty of your child's life hanging over you...the wondering how quickly things can change...the gradual acceptance that it is all in God's hands. It is a dance...changing from one moment to the next. A blessing to be sure...but there are days when it does not feel that way, especially the days when a fellow heart family loses their child. Part of you went with that child, not only in grief for their loss, but in hope for your own.<br /><br />I think I can...I think I can...said the little train.<br />Chug..chug...chug...<br />Puff...pufff...puff...<br /><br />I should consider myself blessed, to be a witness to such a miracle.<br />Nothing that he does comes easily.<br />Everything is harder for him, and as a mother...<br />Well, sometimes it hurts.<br />I am not always sure if it is him that I hurt for, or it is my hopes gone astray...<br />I wonder what it would be like to be that person, who thinks that nothing bad can happen ...just once more.<br />That we live in a world where prayer can change the outcome of every sick child...<br />That there are always happy endings...<br />I listen attentively as friends tell me how badly they want their child to place first on the track team, or make head cheerleader and I think...<br />I hope that we have more time...a multitude of more time.<br />Is it wrong that they are proud of their children's wonderful accomplishments?<br /><br />Absolutely not!<br /><br />I am the one who has changed. I cannot help it. I revert from a little jealousy to alot of gratitude. One day at a time.(Forgive me Lord, I guess I am only human afterall)<br /><br />The sounds of the other mothers talking is drowned out, as I watch my child drift slowly downward...<br />He had reached the top!<br />And as he comes back down...huffing...I thought I could, I thought I could, I thought I could...<br /><br />I will be here waiting...because I always knew this day would come.<br /><br />CO 1:27 but God has chosen the foolish things of the world to confound the wise, and God has chosen the weak things of the world to shame the things which are strong.Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-52277631761678361012009-11-06T07:58:00.000-08:002009-11-06T09:00:53.740-08:00Happy Birthday Braeden...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAV1Cqq7ssMsE1vFojOYpoOVkzJ3PhWjfX2dt4yD0e8yCrPUdKktp3-wCRK79ghT6hbSYcuFgmMrTyrSPe-6Z0Vb9Wb7_VtKVjayi1QQ_2H14rvg_9ZYWwxTkkwiYl1ozARg_f6z7fRaY/s1600-h/100_1043.JPG"><img style="WIDTH: 320px; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5401021066252547266" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAV1Cqq7ssMsE1vFojOYpoOVkzJ3PhWjfX2dt4yD0e8yCrPUdKktp3-wCRK79ghT6hbSYcuFgmMrTyrSPe-6Z0Vb9Wb7_VtKVjayi1QQ_2H14rvg_9ZYWwxTkkwiYl1ozARg_f6z7fRaY/s320/100_1043.JPG" /></a> You are five today...and as much as I wanted to write an amazing post about just how wonderful the last 5 years have been, I was awake half the night trying to keep your fever down. You are sick today, and as I wait to hear back from the pediatrician I realize that my plans for letting you pick a special activity for this evening are going to have to wait. A reminder that life never goes according to our plans :) I asked you what you wanted for your birthday last night, and you said, "Taco Bell" (This coming from the child who eats almost nothing)I had to smile...Happy Birthday sweet boy, you are loved more than you can imagine.<br /><br />I have hope that someday,<br />When my child understands,<br />I'll set him on my lap annd then,<br />He'll ask me of God's plans,<br />In my own sweet daydream,<br />He'll lift his shirt up high,<br />And say,"mom am I different?"<br />And then, he'll ask me why?<br />I'll get the chance to share with him,<br />The long journey...before,<br />And tell him that he's very brave,<br />And God has plans in store.<br />I'll tell him of the battles,<br />That children like him face,<br />And how we must remember,<br />To always lean on grace.<br />That I have learned of courage,<br />Through the lives of those we've known,<br />And I am ever certain that,<br />We never walk alone.<br />That everyday's a miracle,<br />And life is to be treasured,<br />That hope and faith have brought us through,<br />And these things can't be measured.<br />And others are in heaven now,<br />(there lives tend to remind me)<br />That even when I run away,<br />Somehow son, God still finds me.<br />And when life seems to hard to bear,<br />And signs become easy to miss,<br />Brave little souls seem to whisper,<br />Have faith, you'll get through this.<br />Some may say your heart is weak,<br />And there are some things you will never do,<br />But you can do most anthing,<br />That you put your mind to.<br /><br />I have hope that someday...<br />You'll do the same as me,<br />Your child will come running,<br />And you'll set them on your knee,<br />And lift your shirt for the hundedth time,<br />As your child says tell me the story,<br />About your very special heart,<br />And how it's brought God glory.<br />Tell me about your heart friends,<br />the ones that they just couldn't save,<br />And how your mommy told you that,<br />they were so very brave.<br />I imagine, you'll smile then,<br />(You smile all the time)<br />Then hold your child closely,<br />And say, Once upon a time...<br /><br />Mothers can wish for such things,<br />it helps the heart to cope,<br />perhaps its even possible,<br />With faith,and love, and hope...<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com4tag:blogger.com,1999:blog-2183380317276469259.post-54005142267997089792009-11-05T10:25:00.001-08:002009-11-05T20:55:24.140-08:00Ever wanna cry?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuw7m5BDZvtHF4qGKHyi5dboJ-jewz3iWkGHnw8fo3MwO_zHL5W7pZSB7g2O7eoEDLM3FJtd5V4emQaEHweOsirP14blwjML-5UiyQavym4vMz1MlF1KJ6ZeLYbtKK0TRsYOPvfVku7yU/s1600-h/100_0984.JPG"><img style="WIDTH: 320px; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5400688066821338754" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuw7m5BDZvtHF4qGKHyi5dboJ-jewz3iWkGHnw8fo3MwO_zHL5W7pZSB7g2O7eoEDLM3FJtd5V4emQaEHweOsirP14blwjML-5UiyQavym4vMz1MlF1KJ6ZeLYbtKK0TRsYOPvfVku7yU/s320/100_0984.JPG" /></a> Do you ever wanna cry? Me? I have always been the "strong" one, there is no time to cry, I need to hold this together. I need to be stay focused. Life has been tough, but there is certainly no time for tears. It's been wearing on me lately, and I can't help but ask myself if the best thing you can do is just allow yourself a good "cry" every once in awhile. You know...the kind where your trying to catch your breath afterward for a good 15 minutes?<br />Braeden's trip to the cardiologist was "perfect". His heart function is great, he has minimal leakage in his tricuspid valve, and the his echo report showed no changes. I am thankful.<br />It seems that the stress of the last 5 years are catching up with me, don't get me wrong, every single time I allow myself to feel even a hint of sadness for our situation, I am quickly reminded of those no longer here with us... the children taken away by CHD far too soon. It is so unfair.<br />I often push my fears and worries deeper, not wanting to face them, wondering will the worry ever go away?<br />Just this morning I woke up still crying from a dream. I was on a bus talking to someone about Braeden's condition. After telling her that he has a heart condition,kidney issues,feeding problems, and delays...I heard laughter behind me. I turned around, and there was a teenage boy laughing at me. I knew in my dream that he was laughing at what I had just said(dreams are so funny that way)"What is so funny?" I asked him. "It's funny that your son will never be normal like me", he said. In real life, I am one of the most non-violent people that you could ever meet. I've never even been in a fist-fight in school. That did not stop me from pummeling this kid on the bus though.( in dreamland) And as I did, I can clearly remember saying,"How would you like to watch your friends children die from something that they cannot control? How would you like to see your own child suffer and know that you are helpless to prevent the pain? How would you like to wonder if you will bury your own child? I woke up with tears in my eyes, visibly shaken.. If you won't allow yourself a good cry... I suppose the way may well be paved for you. I feel a little better now, and I guess we all have our breakdowns every now and then...it is getting back up that matters most. Braeden will be 5 tommorrow...wow 5..I will be sure to make a post :)<br /><br />I'm in the "boxing ring" of life,<br />there are no rules here,<br />I block each punch with all I have,<br />I must not show my fear,<br />But soon the punches come too fast,<br />My vision is impaired,<br />The fight goes on...as I grow tired,<br />(And just a little scared)<br />Surely I can take no more,<br />Im bruised,beaten and worn,<br />I must not give up on this fight,<br />Although my faith's been torn.<br />I raise my fist in victory,<br />this fight ain't over yet,<br />I have some strength left in reserve,<br />From all those I have met.<br />If they can stand in courage,<br />then maybe I can too,<br />I find a dose of bravery,<br />From all that they've been through.<br />My oppenents blows intensify,<br />His need to win seems stronger,<br />And I'm not sure that I can stand,<br />On these two feet much longer.<br />He throws a punch of doubt my way,<br />then follows it with spite,<br />Even with my best defense,<br />I cannot win this fight.<br />My hands fall down, my gloves come off,<br />I'm not sure what to do,<br />I hear a voice behind me say,<br />"Let me take those for you".<br />Why would this person want my gloves?"<br />I'm startled and undone,<br />The man throws down my soiled gloves,<br />And says, "This fight's been won".<br />Each blow meant to destroy you,<br />Each careless word once said,<br />I walked into that ring myself,<br />And took them in your stead.<br />"Oh Lord, I've grown accustomed,<br />To fighting everyday,<br />Sometimes I truly wonder if,<br />There is another way.<br />This is a challenge for me,<br />To lay aside my hands,<br />And place my fears with someone else,<br />Who knows and understands.<br /><br />~Stephanie Husted<br /><br />These things I have spoken to you that in ME you may have peace. In the world you will have tribulation,but be of good cheer, I have overcome the world.<br /><br />John 16:33Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com7tag:blogger.com,1999:blog-2183380317276469259.post-16277252298597091302009-10-08T11:35:00.000-07:002009-10-08T11:37:29.785-07:00The Classroom<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijP9hCDoUWbmQOiX8CDgNBKKnMsvOea0fwpbfbu1xxUWVvr3WMX-wTH8QAbWRUR0Wv9trx_LGqsMrYlJfkxAEfLJunvGn28-Vt-PaIn9YiVxLtTGzB1Wnk7h8pmOwz140zYSIQ7pzoD2k/s1600-h/school-stress.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 205px; FLOAT: right; HEIGHT: 175px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5390299922410727010" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijP9hCDoUWbmQOiX8CDgNBKKnMsvOea0fwpbfbu1xxUWVvr3WMX-wTH8QAbWRUR0Wv9trx_LGqsMrYlJfkxAEfLJunvGn28-Vt-PaIn9YiVxLtTGzB1Wnk7h8pmOwz140zYSIQ7pzoD2k/s320/school-stress.jpg" /></a><br /><div>I had a dream the other night...<br />It seemed so very real...<br />I sat in a large classroom...<br />I thought...hey what's the deal?<br />I'm done with all these text books...<br />Exams and essays too...<br />I tried to get up from my desk...<br />But found...I stuck like glue.<br />I realized I was here to learn...<br />Or know,or find, or seek...<br />And so I opened up my mind...<br />To hear the teacher speak.<br />"If you could share your greatest trial"...<br />she said, with some dismay...<br />And write it down on just one page...<br />Tell me...what would you say?<br />I looked down at the desk before...<br />I found a single sheet...<br />Of paper that would hold my life...<br />Entirely... complete.<br />And so I picked my pencil up...<br />And began to compose...<br />The things I've found...<br />The things I've lost...<br />The life I had not chose...<br />I wrote of all the trials we've faced...<br />The worries,doubts and tears...<br />How everyday...it came complete...<br />With a set of brand new fears...<br />I wrote about these children...<br />Who bravely fight each day...<br />And teach us all so very much...<br />(And how some can't be with us today)<br />I wrote of all the times in life...<br />That I thought my faith had been taken...<br />But then I remembered another...<br />Who asked... God...have I been forsaken?<br />I filled the sheet with uncounted words...<br />Never realizing emotions within...<br />Hope and anger...joy and love...<br />I just didn't know where to begin...<br />And so my words came to and end..<br />Each paragraph and line...<br />I found I could not write..."The End"...<br />Right now...things are just fine.<br />And "now" has become adequite...<br />To see us through each day...<br />Tomorrow has it's own worries...<br />We've learned how to live for today...<br />And my child is a miracle...<br />With all that he's been through...<br />I addressed my letter carefully...<br />I wrote...Dear God, "Thank you".<br />Hope...it gives you new eyes...<br />Hope....sees the future as bright....<br />If you had only one sheet of paper...<br />Tell me... What would you write?<br /><br />~Stephanie Husted</div>Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com5tag:blogger.com,1999:blog-2183380317276469259.post-84101971873576623472009-09-27T22:03:00.000-07:002009-09-27T22:43:10.449-07:00A letter to my son...Some of life's most difficult decisions, are also the easiest...<br /><br />I can still clearly remember a doctor telling my husband and I that we needed to make an important decision....the most difficult circumstance we had ever faced, brought with it, an amazingly simple choice. Would we give our unborn son a chance to live? Would we put him through three open heart surgeries? Hosital stays?A life of uncertainties?<br />Are you sure you want to do this? the doctor said placing his warm hands on mine. Having this child will change your life forever...indeed it has, and for that I remain most thankful.<br />There are times that I am at a loss for words. Quite recently as I tried to share with someone close to me, the intense feelings that so often accompany raising a child with a CHD. As she tried to compare it to her daughter's tonsillectmy...I sighed...then smiled. It is not always easy to understand. I do not fault her, in her mind, I suppose she was trying to empathize by comparison. I don't think I truly understood myself, until I held Braeden in my arms surrounded by wires, watched his tiny heart pumping from under a bandage, brought him home on oxygen, administered countless meds, worried over every cold, splattered purell on everyone like it was going out of style,handed him over for heart surgery once again, came close to losing him, and watched powerlessly as our dear heart friends fought bravely and lost their lives. If you have ever brought your child to the doctor and heaved the largest sigh of relief(out loud) just to hear that all is well, than I'm sure you know what I mean. So much more than a tonsillectmy...a choice, a life changed...a miracle.<br /><br />To my son,<br /><br />I write this as I wonder,<br />Will you ask someday?<br />Why do I have this scar mom?<br />Did God make me this way?<br />What will happen to me?<br />What does my future hold?<br />Will I hold my own children?<br />Then live until I'm old?<br />I think about your future,<br />Imagining what lies ahead,<br />Perhaps I need to concentrate,<br />On present things instead.<br /><br />The present:<br /><br />Right now you are enjoying life,<br />A typical mischievious boy,<br />You make us laugh...yes everyday,<br />And fill our hearts with joy.<br />And people often ask me,<br />So he's all better right?<br />His heart is fixed, he seems just fine,<br />His future's looking bright.<br />Yes, "He's doing well", I say,<br />I hope things stay this way,<br />I still fear for his future,<br />And every night I pray...<br />"Give me yet another day,<br />Keep my child strong,<br />I do not want to lose him Lord,<br />Please let his life be long.<br /><br />Thank you...<br /><br />Thank you Lord,<br />for showing me,<br />What just one child can do,<br />I marvel at his courage,<br />And the trials he's been through,<br />Thanks for your compassion<br />(And need I say it?...grace)<br />You've led me through each valley,<br />And you've brought me to this place.<br />A place where I'm not angry,<br />And it's easier to see,<br />That I was not the person,<br />That you wanted me to be.<br />Thank you for the trials Lord,<br />They've taught me how to give,<br />Thank you for my child Lord,<br />He's shown me how to live.<br /><br />Did God make you this way?<br /><br />I've asked myself this question,<br />A thousand times before,<br />Then it became a question that,<br />I just could not ignore.<br />God, He made you perfect,<br />Bestowing you with gifts to share,<br />God made you with his own hands,<br />Then numbered every hair.<br />He saw no imperfection,<br />Or heart...all rearranged,<br />He saw you...his well loved child,<br />And then he saw...lives changed.<br /><br />The future...<br />The future is no place to live,<br />And neither is the past,<br />The present should be cherished,<br />As it truly goes too fast,<br />I don't know what your future holds,<br />Or what we'll have to face,<br />I know who holds us through each storm,<br />I know we lean on grace.<br />I know that life's not always fair,<br />I know God has a plan,<br />I know He gives us strength and hope,<br />I know, he says..."You can".<br /><br />I write this as I wonder,<br />Will you ask me why?<br />Will you someday understand,<br />Just why we had to try?<br />Know, how very much your loved,<br />(Through every storm and strife)<br />Know, I wanted you to have,<br />A chance... to live your life.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com8tag:blogger.com,1999:blog-2183380317276469259.post-20203161540658921472009-06-10T14:12:00.001-07:002009-06-10T14:21:04.487-07:00"Miracles"“Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”C.S. Lewis<br /><br />I like to think that we are all part of a much bigger story, that we just cannot see yet. Faith is the window, and sometimes we all get a small glimpse into the eternal. That small glimpse is what I like to call a miracle. As most of you know already Tommy and Lindsay both received the gift of life this week... new hearts now beating strong. Both of them had been waiting for quite some time, and part of the miracle is in the fact that they received their new hearts just one day apart from eachother. They are both recovering well, but could definitely use your prayers in the days ahead, as there are always bumps along the way. I was able to visit with Tommy and Colleen yesterday, and I definitely got goosebumps while listening to her describe the events leading up to receiving his new heart. Simply amazing in so many ways. As he sat up in bed happily eating his fettuchine alfredo, I couldn't help but think wow...I really am witnessing a miracle.At the same time, it was just a few short weeks ago that our heart buddy Ethan entered his heavenly home, and the pain throughout our heart family is still very fresh. Ethan made his presence quite known throughout this last week, and we all miss him dearly. As you pray for Tommy and Lindsay, and both of the donor families, please remember the Bilpo family as well.Hug your children tightly, make time to tell them how much they mean to you, and open your eyes to miracles...because yes, they do still exist.<br />There were two very special friends,<br />Two hearts that life connected,<br />They shared not only hopes and dreams,<br />But a bond that most never suspected.<br />You see these two brave little boys,<br />Were friends right from the start,<br />As both of them came into this world,<br />Bearing a most special heart,<br />They shared a bond, quite unlike most,<br />They shared laughter galore,<br />Syringe fights...and encouragement,<br />But this story holds so much more...<br />As both were born with broken hearts,<br />That just didn't work as they should,<br />They'd lived this way for all their lives,<br />But had learned how to cherish the good,<br />They brought the gift of precious hope,<br />To many, I've no doubt,<br />And their lives have reminded me,<br />What friendship is about.<br />But then the saddest thing occurred,<br />As Ethan grew more tired,<br />And many prayed he would get well,<br />As his life had left them inspired.<br />But heaven became Ethan's home,<br />And God welcomed him with a smile,<br />He told Ethan, how loved he was,<br />Then He said, "You have faced quite a trial".<br />And as the angels took his hand,<br />To the place where all God's children play,<br />Ethan turned to God and said,<br />"Please don't forget Tommy, okay?".<br />"He's waiting for a perfect heart,<br />That only You can send,<br />Will you make sure he gets it?<br />He's been such a good friend.<br />God took Ethan's hands in his,<br />Compassion on His face,<br />Your heart is whole now Ethan,<br />You've shown amazing grace.<br />Your footprints will remain on earth,<br />With those you've had to part,<br />Your presence will remain with them,<br />Your friend will get his heart.<br />Some things must come through hardship,<br />Through patience, hope and strife,<br />That's why it is miraculous,<br />To get the gift of life.<br />"And Lindsay", Ethan whispered,<br />She needs a new heart too,<br />God just smiled and then He said,<br />"I'll see what I can do".<br />God sighed right then, I'm certain,<br />Touched by this bond of love,<br />I do believe he answered prayer,<br />Sending Tommy new life from above.<br />And Ethan played a special role,<br />From behind heaven's scenes,<br />And I remain reminded,<br />Just what true friendship means.<br />And miracles can still be found,<br />Within Mott's prayer filled walls,<br />The love of those within our hearts,<br />Still lingers, in these halls...<br /><br />~Stephanie Husted<br /><a href="http://s287.photobucket.com/albums/ll148/stephany1975/?action=view&current=7107_DSC04984_display.jpg" target="_blank"></a><br /><br /><a href="http://s287.photobucket.com/albums/ll148/stephany1975/?action=view&current=7107_DSC04984_display.jpg" target="_blank"><img border="0" alt="Ethan and Tommy" src="http://i287.photobucket.com/albums/ll148/stephany1975/7107_DSC04984_display.jpg" /></a><br /><br />Tommy and Ethan sharing a story<br /><br />"Friendship is born at that moment when one person says to another,What! You too? I thought I was the only one."C.S. LewisStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com0tag:blogger.com,1999:blog-2183380317276469259.post-26970498868064961822009-03-12T11:42:00.000-07:002009-03-12T12:07:12.987-07:00Who is your God?Recent discussions between friends and family have seemed to bring this question to light. Who is God? and what is it exactly that he expects of me. Oh boy...I wish that I were the expert on this subject. If I had God's agenda for my life in an easy to read manuscript, things would undoubtedly be much easier. I don't have a manual, I do have His word. I don't have the answers, but I do have the guidance of His spirit(when I choose to listen) I am far from perfect, and find myself doubting his grace and mercy on more occassions than I care to admit. No, I am certainly not the "model' christian...but I am loved anyway. Isn't that the epithany of grace?<br />I once passed an underpass with the words, "Who is your God?" painted in an array of bright colors. After much thought and consideration....these are my thoughts....<br /><br />Who is your God?<br /><br />You say you believe...<br />in a God you can't see...<br />but I long to ask...<br />Is that only God me?<br />Or maybe you worship...<br />that God they call fear...<br />Walking in doubt..<br />wishing I would appear...<br />and take all your troubles...<br />and make the day shine...<br />then things would be perfect...<br />because you are mine.<br />But life is not easy...<br />and the rain keeps on falling...<br />and though you can't see me...<br />I still hear you calling.<br />I see every tear...<br />and I hear every prayer...<br />I feel every trial...<br />and I know every care.<br />Who is your God?<br />you must choose on this day...<br />you must tread your own journey...<br />you must find your own way.<br />Maybe your God...<br />is the cares of this life...<br />every day spent in worry...<br />every night spent in strife.<br />The baby is sick...<br />and your money is low...<br />the bills are all late...<br />You have nowhere to go...<br />God seems too far...<br />when things seem so wrong..<br />And though you are weak..<br />that is when He is strong...<br />Who is your God?<br />you must choose on this day..<br />you must tread your own journey..<br />you must find your own way.<br />I sit and I question...<br />on days like today...<br />why life is so hard...<br />how I wish I could pray..<br />But I find myself empty...<br />I find my soul still...<br />I stop for a moment...<br />Just to ask,"what's your will"?<br />The problems keep coming..<br />Oh Lord it's not fair!<br />The pain in my heart...<br />is just too hard to bear...<br />But when it seems darkest...<br />and I can't find your light...<br />I know that your with me...<br />You will make the wrongs right..<br />I don't know the whys...<br />for I can't see your ways...<br />But I know You are Lord...<br />and I will seek your face.<br />Who is your God?<br />You must choose on this day...<br />You must tread your own journey...<br />You must find your own way...<br />You are Lord in my heartbreak..<br />And Lord in my fears...<br />You are Lord in my laughter..<br />And Lord in my tears..<br />You are Lord on this journey...<br />Wherever it leads...<br />You are Lord of my life...<br />You will meet all my needs.<br />You ask me for faith..<br />So I choose on this day..<br />To give you my burdens...<br />please take them away!<br />As I walk on this journey...<br />as I do what I must...<br />I will know that I'm loved...<br />I will give you my trust.<br /><br />John 6:68 But Simon Peter answered Him, "Lord to whom shall we go? You have the words of eternal life.Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com1tag:blogger.com,1999:blog-2183380317276469259.post-35650193860407197492009-02-11T17:15:00.000-08:002009-02-11T17:23:49.855-08:00Happy Heart week...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisUCaSeum4LcO8hFrJd-PSJYLsU5VH_nZ7yqXytLIWjpVYx5-faxq-puK6T7FGGe1hS3D6VI6KBNgjf4WhnK3pGC8rdiZKQG-_nA7LqCDbwiMtqU7dHNXIRJqvJXYqCZBuBfUVKaGqRjg/s1600-h/100_0195.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisUCaSeum4LcO8hFrJd-PSJYLsU5VH_nZ7yqXytLIWjpVYx5-faxq-puK6T7FGGe1hS3D6VI6KBNgjf4WhnK3pGC8rdiZKQG-_nA7LqCDbwiMtqU7dHNXIRJqvJXYqCZBuBfUVKaGqRjg/s200/100_0195.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5301715461362553202" /></a><br />Happy Heart week to our amazing heart children!<br />(CHD Awareness Week Feb. 7-14)<br /><br />My fingers run along the line... <br />Upon my child's chest... <br />I ask him then...<br />"Who loves you"? <br />Why mommy...loves you best. <br />"Do you know your brave and strong"? <br />"And hope shines in your eyes".. <br />Do you know each day with you... <br />Is like a new sunrise? <br />I wonder if you understand... <br />Just how you've changed my heart.. <br />My prayer to God will always be... <br />"Don't ever let us ever part". <br />Do you know...sweet son of mine...<br />How very loved you are? <br />I could search for all my lfe... <br />But I need not look far. <br />For beauty rests within my midst... <br />In the heart of one small boy... <br />You've overcome so very much... <br />And live each day with joy. <br />Who loves you most I ask again... <br />A whisper...in his ear.... <br />Life has few sweet moments when... <br />Things seem so very clear. <br />Why mommy loves you silly boy... <br />She thinks you are the best... <br />You laugh at me in answer... <br />I know that I am blessed.<br /><br />~Stephanie HustedStephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com1tag:blogger.com,1999:blog-2183380317276469259.post-82946446061878569562008-09-04T05:33:00.000-07:002008-09-04T05:38:27.951-07:00First day of school<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTkDMwURkAMakawlAA_CVKmzR1TurtqLpFsP3sEy_FlllQwj5uPXivCTf2gLKqqV1p4tt8H84n4GD_dmtDfwUkxu633twkCa4yaUJNDymlL2i7ghyphenhyphencctr35uc8XC4PGsnTgiqRPyPID1E/s1600-h/015.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTkDMwURkAMakawlAA_CVKmzR1TurtqLpFsP3sEy_FlllQwj5uPXivCTf2gLKqqV1p4tt8H84n4GD_dmtDfwUkxu633twkCa4yaUJNDymlL2i7ghyphenhyphencctr35uc8XC4PGsnTgiqRPyPID1E/s400/015.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5242144142694638098" /></a><br /><br />Braeden started Pre-school yesterday, and he was so excited!<br />Sometimes I think it is harder for mommy to let him go :)Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com0tag:blogger.com,1999:blog-2183380317276469259.post-25584526324170596852008-08-10T21:10:00.000-07:002008-08-10T21:12:23.590-07:00Elmo has to go!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_rcUgdQKGpNhfa9MRb1ptqtl3dw6kdor0JfKI0iHA6UWDlxifWudZhakegmnxRWmfJ750egeGW6KtypxuZtZGRTfhg5L5L-v1UNvRp3Itg-vVzDqOnv7iyrLQkbYyyfl8WiyRUT1LOCA/s1600-h/005.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_rcUgdQKGpNhfa9MRb1ptqtl3dw6kdor0JfKI0iHA6UWDlxifWudZhakegmnxRWmfJ750egeGW6KtypxuZtZGRTfhg5L5L-v1UNvRp3Itg-vVzDqOnv7iyrLQkbYyyfl8WiyRUT1LOCA/s400/005.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5233107996806316962" /></a>Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com2tag:blogger.com,1999:blog-2183380317276469259.post-70751430743366271162008-08-03T08:40:00.000-07:002008-08-03T09:32:35.207-07:00In Loving MemoryDear God,<br />When a little child leaves us....<br />Our first question is...Why?<br />Why not let this child live?<br />Why did he have to die?<br />How can such a thing occur?<br />Why couldn't he stay longer?<br />We have prayed for this sweet boy...<br />"Oh Lord help him grow stronger"...<br />And still he leaves this place on earth...<br />Despite each prayer and plea...<br />To join so many other's...<br />In sweet eternity...<br />His life has taught us many things...<br />His journey touched us so...<br />But why Lord must this happen?<br />Why did he have to go?<br /><br />Beloved child,<br />Your pain has reached the heaven's child...<br />Please don't think I don't know...<br />How very much it hurts inside...<br />To let your child go...<br />He sits with me this very day...<br />In heaven up-above...<br />Surrounded by my angels...<br />But held still...by your love.<br />The doubts may always be with you...<br />And as I hear your cries...<br />I ask you to consider...<br />Some of the other "whys"...<br />Why did his smile light the room...<br />On the cloudiest of days?<br />How could he touch a multitude...<br />In oh so many ways?<br />Why does his courage guide you...<br />In ways you can't convey?<br />Why does his life remind us...<br />To love..to hope...to pray.<br />Heaven may seem far away...<br />Days and months and years....<br />A longing to see his sweet face...<br />And wash away your tears...<br />Have faith child...when I tell you...<br />Your not truly apart....<br />You hold a piece of heaven...<br />Forever in your heart.<br />Goodbye seems all to final...<br />"He's gone" just isn't true...<br />"He lives on in each of us"... I<br />n what we say and do...<br />"Why"....did we know a miracle?<br />Who brought us such great joy?<br />Why did we get a chance to meet...<br />This very special boy?<br />Sweetest child... special gift..<br />Loved beyond all measure...<br />Only for a little while...<br />For us to know and treasure.<br />Hold onto that most joyous day...<br />A tear,a smile, a sigh...<br />When he is in your arms again...<br />You'll never say...goodbye.<br /><br />Stephanie Husted<br /><br />In loving memory of Braylon Foerster<br /><br /><br />God provides some sunshine...<br />to help the flowers grow...<br />God provides some rainfall too...<br />For He wants us to know...<br />That though we cannot see him...<br />When the darkness closes in...<br />He is right beside us...<br />Just as he's always been.<br />God provides us laughter...<br />So we might enjoy all...<br />God provides us tears, and says...<br />"I hear you when you call."<br />God provides us children...<br />So our view of Him is clear.....<br />God provides us hope and faith...<br />And tells us not to fear.<br />God provides a place of rest...<br />where all things become new...<br />God has called it heaven...<br />(It's home to me and you)<br />God gave us a special gift...<br />His light still shining bright...<br />Corbin how we'll miss you...<br />(You've taught us how to fight)<br />Although our hearts are broken...<br />To know that your not here...<br />I think of all you've left behind...<br />(It makes your life so clear)<br />You have overcome Corbin...<br />You've faced each trial with stride...<br />And you have taught each one of us...<br />That yes, God does provide.<br />Tears because we miss you...<br />A smile for all that you've been...<br />A hug as a reminder...<br />We'll soon see you again.<br /><br />In loving memory of Corbin Grabb(HLHS)<br /><br />Jesus said I touched so many,<br />but my time on earth was through,<br />I know how much you miss me,<br />please know I miss you too.<br />Just wait until you get here,<br />You'll be so proud of me,<br />when you see how many live's were changed,<br />through hearing my story.<br />I did not lose this battle,<br />I just took Jesus hand,<br />remember I'm a fighter,<br />and try to understand.<br />I know you all feel helpless,<br />struggling to understand why?<br />Please try to remember I'm with you,<br />when you laugh, when you dream, when you cry.<br />I'm helping HIM prepare a place for us,<br />and someday you will see...<br />Although I am not with you now,<br />were still a family.<br />The Lord searched all the heavens..<br />Oh who would heed his call?<br />To touch the hearts of so many...<br />was Jerra Mia Hall.<br /><br />In loving memory of fiesty Jerra Mia Hall(HLHS)<br /><br />I watch you now from Heaven,<br />and the angels gather near,<br />asking who's that you are watching?<br />I say, "Hush now I can't hear".<br />So, they arch their heads a little,<br />wondering why I look so glad.<br />Then I smile and point, "It's them".<br />"It's my mama and my dad".<br />"I know they think about me",<br />"Sometimes struggling through the day",<br />"They want to wrap their arms around me",<br />"See me run and smile and play".<br />"Do they know that here in heaven",<br />"All the Father has in store"?<br />"That I do all of these things",<br />"Yes, these things, and so much more".<br />"I'm so lucky that I know them",<br />"And so blessed to call them mine".<br />"How I wish that I could tell them",<br />"That I watch them all the time".<br />Jesus said "It won't be long child",<br />"Just you wait and see",<br />"In the twinkling of an eye "<br />and you'll all be here with me".<br />"No more surgeries or doctors",<br />"No more tears, and no more pain".<br />"Just a family hand in hand",<br />"Walking through the summer rain".<br />"So when you think about me",<br />"as I know you often do",<br />"Do not think of me as gone",<br />"But as your child who waits for you"<br /><br />Remembering Joey Kaiser(HLHS)<br /><br /><br />Hello my precious daddy,<br />and mommy of my heart,<br />I know how much your missing me,<br />since we have been apart.<br />I'm sitting in the Father's lap,<br />and basking in his light...<br />I can see the children playing,<br />and the angel's dressed in white.<br />God has a special bottle and,<br />he says it holds your tears,<br />he says he knows your missing me,<br />and understands your fears.<br />Heaven is so beautiful,<br />someday you'll be here too!<br />But Jesus says you can't come now,<br />there's far too much to do!<br />My life has touched so many,<br />they will never be the same,<br />And God loves them,like you love me,<br />he calls us each by name.<br />He held me when I got here,<br />I think I heard him weeping,<br />He showed to me that bottle,<br />that he says he has been keeping.<br />I looked at it and wondered,<br />how many tears could it contain?<br />He looked at me with gentle eyes,<br />so that he could explain.<br />"But Jesus how can ALL their tears...<br />"fit in this jar so small"?<br />"Oh child of mine, your tiny too..<br />"but mighty is your call"!<br />"I look not on the outward",<br />"for the inside holds great things"...<br />"Why just behold the miracle",<br />"that your short life still brings"..<br />"Yes, tears for you will fall each day",<br />"though not in the heavens above",<br />"but such great pain could only come"...<br />"from such amazing love".<br /><br />Psalm 56:8 You number my wanderings, Put my tears into your bottle, Are they not in your book? Rev. 21:4 And God will wipe away every tear from their eyes,there shall be no more death,nor sorrow,nor crying. There shall be no more pain, for the former things have passed away.<br /><br />Remembering Kylee Ladonna Boomsma(HLHS)<br /><br />One day this will all make sense...<br />(at least that's what I'm told)<br />The trials that I face today...<br />Will all become as gold.<br />Refined in the fire of suffering...<br />Purified for His glory...<br />Changing me forever...<br />Becoming my testimony.<br />Sleepless nights of worrying...<br />Moments I can't cope...<br />Prayers that seem unanswered...<br />Will all turn into hope.<br />Messes become messages...<br />Sorrows become smiles...<br />The storm clouds start to dissapate...<br />Goodbye to earthy trials.<br />The sun begins to shine again...<br />I see no sign of rain...<br />Heaven must be beautiful...<br />And here, there is no pain.<br />There are no tears in heaven...<br />No... love prevails here...<br />I can't imagine living... Each day...<br />without my fear.<br />I think I hear a whisper from...<br />The Lord in all his glory...<br />He beckons me to come to him...<br />He wants to hear my story.<br />Refined in the fire...<br />And held all the while...<br />He knows me so well...<br />That I can't help but smile.<br />The tears are forgotten...<br />Just a bad memory...<br />And all that remains...<br />Is his great love for me.<br />I understand...I finally see...<br />Each storm that I've been through...<br />Has brought me to your waiting arms...<br />Has brought me home...to You.<br /><br />In loving memory of Haley Harris(HLHS)Stephaniehttp://www.blogger.com/profile/18262832699270194252noreply@blogger.com0