I’m a Heart Mom

baseball teamI have talked about my oldest son Matthew before. He was born missing half his heart and has what is known as Hypoplastic Left Heart Syndrome. Yesterday was a pretty big day for him. It was his very first day on a real baseball team!  He joined a special needs baseball team and he has been so excited for his first game!

First let me take a second to explain why this is such a big deal for him. Matthew is delayed some, and also is physically  about half the size of most kids his age. Part of that is genetic the other part is due to having half a heart. While other kids were learning to walk, Matthew was just recovering from his two major open heart surgery (and a handful of other corrective surgeries in between). He was being tube fed and lacked the energy or muscle tone to do simple everyday things other kids his age were doing. There were moments when I wondered IF our lives were ever going to feel “normal”, if there would ever be weeks or months that did not involve hospital stays and doctors visits, or watching monitors.

In those days I just WISH I could have seen a tiny glimpse of the sweet, confident boy he has become.  It does not seem to bother him one bit that he is a little different.  He loves life and loves people.  Today as he played with his teammates Matthew just saw a group of friends that wanted to have fun and play a game.  He has the beautiful gift to see THEM, not their disability.

If you have never been to a special needs event…. you are missing out.  I do not think I have smiled so big in a long time.  These kids and coaches know how to enjoy life.

matthew baseball, special needs baseball team, team spirit

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matthew hypoplastic left heart syndrome, turns 12

Tomorrow is a pretty big day for our family.  My son Matthew turns 12 years old.  If you have followed my blog for awhile you know that he was born with Hypoplastic Left Heart Syndrome, he was born missing the whole left side of his heart. From day one he has been a fighter, and every day has been nothing shy of a miracle and gift from God.

My sweet little baby boy that was so very handsome, and had wisdom beyond his years has turned into a handsome young man as well.  He is doing well but still has moments that remind me just how fragile he is.  On Friday he became over tired and went from being a happy boy at school, to pale, weak and needed to come home and rest in just a matter of minutes.  As I watched him sleep, my heart sank just a little praying that he was just tired and that he would be back to normal soon.  Sure enough we woke up from his nap, ready to face the rest of the day full speed ahead.

12 years is pretty special to any child… but to our family it is simply remarkable!  Feeling so very blessed!

matthew

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On the one year death of Mia McDonald her family has asked that in her memory we do a service for another, I could think of no better service than to share her story and have you ASK YOURSELF the question… If the day came would I be able to give the ultimate gift and in my own grief save another?   Organ Donation changes and saves lives!

Mia your have touched our hearts in ways you will never know, we love you and your family!

mia

Last October I shared a post with you called The Text That Made Me Think About Never Blogging Again.  I told you the story of sweet little Mia who’s heart stopped and she went to live with her Father In Heaven.  That was not just a fancy play on words and a way to grab your attention to read my post.  I really did think about never blogging again.

I have a confession to make, since that day my heart is still aching I have really been looking at my life and trying to put things in order.  Some days I am consumed with sadness that I can not shake off on those days I feel hopeless, sad, overwhelmed.  The days I feel that way are the days I feel like my life is out of balance, I feel like all my energy is going to the wrong thing.  I have been given this wonderful family, I have been given the gift of mother hood.  I have been given this special boy, in which each day is a truly a gift.  But I also have this amazing blog that I get to help people save money, I get to share our story, I get to connect with so many wonderful readers.

But there are not enough hours in the day to be the mother I want to be and be the blogger I once was.  Many of you have noticed I stopped posting my shopping trips, I am not at the store as much, I am not listing my menu plan, or my budget review.  I want to… but some times you need an event to SHAKE YOUR SOUL to remind you once again what you are here on this earth for.  As I have spent the last  year thinking about it.  I am once again trying to fit my life together as God would want it to be.  Putting my family first, not knowing how it will all work out?  But somehow it always does when you put the important things first all the other things fall into place.  This is not easy for me, but I have faith that I am doing the right thing.

I am still blogging don’t get me wrong but at some point I had to realize that I am NOT super woman and working 15 hours most days is not what is best for my family. But I did not know how to stop, and put my life in order.  I have amazing helpers on my blog and I need to let them do just that, and “help” me.

Trying to remember why I started this blog 4 years ago… it was help others.  But somehow on that journey I kind of felt like I lost myself.  I wondered if I was to die would people say ” She sure was a great coupon shopper”… I sure hope not!  That is the last thing I would want to be know for. Sure it is a great skill to have but not the title by which I strive to live my life.  I asked my friends on facebook to list one word that described me little did they know I was really struggling and I needed it as some sort pathetic validation that I was ok.  As I watched the replies I was pleased to see NOT ONE OF THEM listed anything to do with coupons.  I guess I am headed in the right direction.

But what if I asked that questions to you my readers… would you know the the heart behind the person on this blog?  Do you know that saving money is part of my life but SO MANY things are much more important?

So today I share with you one of the things that is on my top 10 most important things in life.

Give Life: Be an Organ Donor
Paul Cardall

Watch it on youtube here.

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Happy to report a “thumbs up” and all looks good for another 4 months with Matthews heart. These appointments are always hard for me as I am always worried it will be bad news. Feeling blessed and so grateful for everyday the lords gives us with our miracle boy.hypoplastic left heart syndrome, HLHS, echo

Every night before my head hits the pillow I go to check on my kids and make sure they are ok.  But as I enter my oldest sons room each night I can not help but hold my breath and say a quick silent prayed to my Father in Heaven that he will be ok.  That his heart will be strong, that he will grant us one more day with this miracle of a boy, that we get to call our son.

We have been very lucky and the last 5-6 years he has been rather healthy, and beside a few hospital stays and seizures his heart has been strong.  Living each day with only half a heart and proving to the world that miracles happen.  To many those weeks even months in the hospital for the first 4 years of his life getting him well, are just a memory…. but not for me.  Not for this Mom, not a day passes where I do not thank the Lord for him, and plead (some days more than others) for the understanding and knowledge of how to teach him, how to care for him.  But most important pray that he can be healthy.

We went in for his 4 month check up, to check his heart again.  I put on my brave face, hold his hand maybe even skip thru the parking lot with him.  But inside I am a mess, I want to crawl into a ball and cry my eyes out.  Terrified this might be the appointment when we get the news that his heart can no longer keep up.  The news that in order to keep our son alive he must receive the life saving gift from another… a heart transplant.   But I can not let that show on my face, I have to be strong.

This week Matthew had his routine echo and heart check up.  He gives the Doctor a high 5 and climbs onto the table to have an echo-cardiogram done.  I hold his hand as I have always done…. but this time I looked down at him, my sweet baby boy and I see something different.  He is still small, he will never be large do to his heart…. But I saw a glimpse of the young man I dreamed and prayed he would be able to become.  My baby boy is growing into a man, and for any Mom that is an amazing site… but for me it is simply breath taking.

hypoplastic left heart syndrome, HLHS, echo Matthew

My sweet handsome boy at just one month old, after his first two major heart surgeries and 3 1/2 weeks in the hospital.

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

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 What is a  Mommy Moment, click here

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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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 What is a  Mommy Moment, click here

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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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