I’m a Heart Mom

If you have been reading our site over the years you know that each year we CELEBRATE our oldest son Matthew’s Birthday.  We do the standard party and cake with candles like most families.  But each birthday means so much more to us.  Being told your son only has half a heart (hypoplastic left heart syndrome) and that each day is a gift… this makes each year nothing shy of a miracle.  Today my sweet baby boy turns 11 years old! What a journey it has been, when I think back to those days/ months we spent in the hospital trying to keep him alive.  I only prayed we would have the “normal” life we are blessed with every day now.  This year has had it’s struggles with his seizures coming back, but over all his health has been amazing.  And for that we thank our Father In Heaven for EVERYDAY!

On a spur of the moment choice I decided to leave my work behind for the night (the reason there is no Albertsons Instore TTV deals the week) and instead go on a DATE with my big guy.  He was beyond excited and could not wait to go on a date with Mom.  I let him pick the restaurant and without thinking twice he wanted “NOODLES”.

My baby boy is 11 but due to his heart he is much smaller than most his age, and from other complications he is also delayed some.  Developmentally he functions at more of  kindergarten level (he is in the 4th grade).  But that does not hold him back he is the happiest, most social little guy in his whole school.   While at the restaurant he saw two girls from his school both of which he ran right up to say hi.  I finished before him, as he was doing more talking than eating.  I just sat and listened to him ramble on about his day and  how much fun he was having.  He would eat, talk some and then snuggle my arm and say “thanks for my date Mom, this is awesome”. He was all smiles.

It was finally time for fortune cookies. I read him his fortune ” You’ll find inspiration to reach your goal from the next movie you watch“.  Then he quickly replied…. “Mom I am going to watch Funny Home Videos with Tom Bergeron, that show is hilarious”.

We laughed together and I gave him a hug.  That is one of the best things about Matthew he is just always happy, he does not worry about the things most people do.  He is just happy and likes to make people smile too. He does it without even trying!

We then took a quick trip to the dollar store where I let him go on a SHOPPING SPREE.  He loves that store, and I told him he could get  what ever he wanted.  As we walked down the isles he said hi to everyone we saw. It makes no difference to him that they are strangers he greeted them like they are old friends. I was not sure what he could come up with, but I was touched when he  picked  a few things for himself and then got gifts for his brother and sisters as well.

Our last stop of the night was downtown Caldwell, it was the first night they turned on the Holiday lights.  They had a big event with street vendors, music playing, camels, reindeer, and Santa.  He was so excited to go see  Santa and once we were done he said, “Mom, was that Santa’s mudder (mother)”.  Silly boy always makes me laugh.

As we walked hand in hand, thru the beautiful lights he told me, ” Mom, thank you this is the BEST DAY EVER”.  A little emotional I gave him a squeeze and told him he was the best date I had ever had too (just don’t tell Daddy that lol).

As a young mother 11 years ago faced with the overwhelming task of caring for a child with special needs I felt a bit hopeless.  I felt under qualified and scared, all I knew was I loved this tiny boy more than I had ever loved anything before…. and that was enough to give me the strength to try and be his Mommy. And hand in hand we have come so far!

Happy 11th Birthday Matthew

I love you more than you will ever know, and I pray the lord gives us another healthy year to come.

 Matthew 2 weeks old

You can read more about Matthew and being Hypoplastic Left heart here under I’m A Heart Mom. 

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Yesterday we had an early morning trip to the ER.

I awoke to that awful “gurgling” noise that my son Matthew  makes when he is not able to breath right while in a seizure. It is so quiet I am not sure how or why I  wake up to it, but I do…. I feel so blessed that Heavenly Father has helped me be in tune enough to him that I seem to awake to it. I found him unresponsive, dusky blue, moaning and seizing in his bed. A sight that I can never get use to, no matter how many times I see it.

We gave him the rectal medication to pull him out of the seizure, but it did not work this time, after waiting over 10 minutes ( not knowing how long he had been in it before I awoke) I sent him into the cold, dark rainy morning, wrapped in Matts arms to the ER. Thankfully my good friend lives right behind me and welcomed my other 3 little ones for an early morning visit, so I could meet Matt at the hospital.

I thought for sure he would we “out” of the seizure by the time I got there… but when I got to the hospital he was still not responsive and his left side had no movement. Slowly over the next hour he came too. Once awake he wanted to go to school (silly boy) smile. I took him home around 9 am and got him to take a nap with me till about 11:30.  He is still tired but doing better… thanks for all your prayers for our little super hero!

(This picture was taken after he had come out of the seizure and had fallen asleep)

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This week something VERY exciting happened at our house.  My oldest son Matthew learned to ride his bike without training wheels.   I have told you before about his story and how he was born missing half his heart (Hyhoplastic Left Heart Syndrome)  and his long journey to becoming where he is today.  I still remember the first time he scooted down the street on his tricycle and the huge smile on his face.  Many of the other kids his age were already riding “big bikes” but he was to small and weak to ride one.  I never thought I would see the day he would be able to have the energy, balance and coordination to ride his very own big boy bike.

Learning to ride a bike is a huge milestone for any child… but when you have had SO MANY challenges in your path it is so much sweeter. I could not stop smiling, I am SO PROUD of my little fighter…. he never gives up!

It’s Matt – So I moved the cars that day so they could ride in the driveway – as I was busy working on a project and lil Matthew says “hey dad look i’m riding my bike”- I casually looked and said yeah thats great – busy with my project. While I grabbed something I thought WAIT that’s not his normal little bike and my head shot over and saw him riding around the driveway with no training wheels! I ran in and told Sarah she had to see this; she was busy with dinner. As I grabbed the video camera and said “No – you need to see this!” . We were so proud that day — as if our boy was the only one in the world who could do that. When he was born we didnt even think he would make it this far!

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hypoplastic left heart syndrome

Happy Valenintine’s Day


In November of 2001 I gave birth to my oldest son Matthew, who is now 10 years old. He was a beautiful baby boy with a full head of dark brown hair. All was well, and in an instant I was this sweet little boys Mom. Soon we realized our son was struggling, trying not to worry we hoped for the best.

About 12 hours after my sweet little Matthew was born we found out he had one of the worst heart defects you can be born with. He was born with Hypoplastic Left Heart Syndrome (HLHS), or in other words he was missing the whole left side of his heart. In an instant my world was turned upside down. We had three choices,

1. Let him peacefully pass away in our arms, and spare him a long road of surgery’s, and hospital stays.
2. A heart transplant, which he would most likely never get in time.
3. Open heart surgery’s (at least 3 and a hand full of other corrective surgery’s). The first one he would need with in days and he only had a 25% chance of surviving.

We decided to give our son a chance at life, no matter what the odds were. We knew we had to try to repair his tiny heart and give him a chance at life. So off to Seattle Children’s Hospital we went. In three years my son had 3 major open heart surgery’s, and 11 other corrective surgery’s. Those three years were filled with moments of total despair. At times the challenges seems more than I could handle. But they were also filled with gratitude, joy, and on over whelming love for my tiny son. Matthew was in the hospital for weeks even months at a time. I had to rely on the knowledge of Doctors and Nurses to give my son the critical care he needed to live. I also had to rely on the kindness of other “heart moms”, who gave me support and love in those difficult times. I was humbled by the kindness of others I made a promise to myself that I would try to give back as a way to say thank you.

Some have asked me why I take the time out of my busy day to write this blog? I know that some of you out there are struggling, I know what it feels like to be over whelmed with the burdens of everyday life. So this is my way of helping you, Let me teach you another way to provide the basics for your family. When I get an email telling me I have helped someone, I feel like I have kept my promise to give back, to help others in their time of need! This is my way of saying thank you …..SO Happy Heart Day!
With a heart full of gratitude!
Sarah

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