I’m a Heart Mom

 

  Texting my son with special needs.  If you have followed our site for awhile you know my oldest son was born missing the left side of his heart. Yes he only has half a heart, he has HypoplasticLeft Heart Syndrome. He was very sick for the first 4 years of his life. We lived in and out of hospitals all over the northwest.  This boy is a fighter, over 14 surgeries he defied the odds and is still with us.  This week something special happened. He sent me a text message.hypoplastic-left-heart-syndrome-texting-my-son-with-special-needs-special-needs-children-each-child-reaches-milestones-at-differnt-rates-simple-joys

That being said he does struggle in some areas. Matthew is very small for his age, and he is also developmentally delayed.   He spends his school days in a special needs program. He is an 8th grader, but is still working at a 1st grade level.  We are so proud of the progress he has made. Sure he is not at the same pace as his peers.  But he is making progress and we celebrate each step forward he takes.

He learned that our cell phones have something called “texting” on them.  And if he looks up Uncle John or Granny’s name he can send them a message. Technically he is not suppose to text without asking. But often he sends a  2-3 word message that might say something like, “Football now” or “Come play”.  He sends a text once a month or so.  But I personally have never gotten a text from him before.

We do not text and drive!

We have a rule in our house, that we do not text and drive. So if I get a message while driving my 11 year old daughter will grab the phone and text for me. She has been doing this for years now.  So this week when I sent my husband a message and he was driving Matthew grabbed the phone and decided he would text for his Dad. This would be the first time he had done that. So I was not expecting him to reply.  This is how our conversation went.

hypoplastic-left-heart-syndrome-texting-my-son-with-special-needs-special-needs-children-each-child-reaches-milestones-at-differnt-rates-simple-joys

 

  Texting my son with special needs

Mom: How is it going

Son: My ibid (did) good

Mom : Is this Matthew or Dad

Son: Matter (Matthew) Dad Driving

Mom: Did you go to the doctor yet?

Son: Come home

Mom Ok love you

Son: Ok (then he sent me the score from last nights football game)

I was smiling ear to ear!

Now to most people this is not a big deal. In fact most people would focus on his bad spelling and lack of sentence structure.  But for me I was smiling ear to ear. This was the first time I had ever had a text conversation with my 14 year old son, and I could actually read it. I knew what he was trying to say. He was so proud of himself,  he was helping text so Daddy could just drive.  Just like his younger sister always does for Mom.

We find joy when any of our 5 children succeed. Yet somehow it seems a little more special when your child who has struggled and worked so hard takes another step forward.  Sure his 6 year old brother can do the same thing, maybe even a better job.  But that only makes this very first text to me so very sweet. I sure am proud of you buddy… and NO this does not mean you can now have your own phone. One step at a time, remember :).

If you would like to read more about Matthew and Hypoplastic Left Heart Syndrome, feel free to read more about him on his heart page.

 

 

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James Hoyt Baseball, sure did make this cute lil special needs baseball player smile

If you don’t know who James Hoyt is, then you should…. but don’t feel too bad, because I didn’t know who he was either.  Let me tell you a fun little story of how James Hoyt in his first game as a MLB pitcher for the Astros, totally made my son smile!

A few weeks ago I was on an early morning flight to New York City (with a layover in Phoenix).  The night before we had just gotten home from a 2 week road trip with our kids, so I was running on only 4 hours of sleep and I was exhausted.   I had planned to try and sleep most of the plane ride.  My husband had the window, I always get the awkward middle seat.  That is when Marcia sat down next to me in the isle seat. I had never met her before, but after a little bit of “small talk” while others were loading. I could tell that she was just a bubbly, adorable woman. My plans to sleep were put aside and I found myself talking for almost 3 hours to Marcia.

Marcia told me all about her family, her dog, making her own almond milk, growing up in the big city then moving to the west and traveling with her kids.  But when she asked me questions about myself… I could tell she was not asking simply  to just fill our time while stuck on a plane. Instead she was asking about  my family because she was just a “good soul” and kind hearted.

Matthew baseball

She happened to be on that flight to Phoenix to watch her son James Hoyt play his first MLB baseball game.  He grew up here in Boise, and over the years has played for an independent league in Texas and even pitched in Mexico for some time. But he also cleaned boats to earn money… yes he was the guy you would hire to scrape the barnacles off your boat.  Time, and hard work paid off and at age 29 he finally got drafted ( I think that is what it is called, lol) by the Astros and now is a MLB pitcher.  She was so excited to go support her son, and cheer him on.

I then told her about my oldest son Matthew.  Matthew is 14 and has Hypoplastic Left Heart Syndrome.  Long story short he was born missing half his heart and after 14 surgeries he is well enough to be a “normal boy”.  He still only has half a heart, but it is now routed in a way that allows him to stay alive.  Matthew also has seizures and significant learning delays.  He is 14, but is the size and tends to act more like a 6 year old.

Matthew has played special needs baseball the last two years. It is the highlight of his year and he just loves every minute of it.  When you ask him what he wants to be when he grows up, he will tell you, a baseball player.  I told Marcia that Matthew and I will have to look for James, and Matthew would love to watch him pitch.

A few days after I got back from my New York City trip, I get an email from Marcia;

Hi Sarah,

I hope you and your husband had a great time in NYC:-)  Houston was such a fun time!!!  Jimmy gave me a strike ball for Mathew that he pitched during his first outing with the Astros.  Maybe when Jimmy comes home for a visit maybe they can meet each other!!
Have a terrific day and let me know the best way I can get this ball to you all.  I am always running circles around town and could meet you anywhere.

Happy Wednesday!!

 

She went out of her way to bring my son,  my lil Matthew a ball back from a MLB game.  It was signed by James and even had dirt from the game on it.  From his first strike out in the Major League. Who does that…. who goes out of their way for a total stranger just to make a little boy smile? Marcia does, see I told you she was a good soul.  I was so touched by her generosity.   Matthew has the ball in a plastic bag on his dresser, and wants to get a special case so he can display it.  It was one of the first things he wanted to tell his classmates at school about, as he went back to school. He sure felt special that he has his very own ball from a MLB game.

So…. Mr. James Hoyt, I have never met you, I didn’t know your name till about 3 weeks ago, but it will now be a name I will never forget. THANK YOU for making my son smile,  thank you  for making him feel special!  And by the way, you have a pretty amazing Momma, but I am pretty sure you already know that!

Matthew baseball

Matthew at his special needs baseball game.

James Hoyt 

pic from MiLB.com

JamesHoyt

Pictures from his first game on Aug 3, 2016 in the 7th inning and the same day he gave us this ball from this game.

Aug 3, 2016; Houston, TX, USA; Houston Astros relief pitcher James Hoyt (51) pitches during the seventh inning against the Toronto Blue Jays at Minute Maid Park. Mandatory Credit: Troy Taormina-USA TODAY Sports

Aug 3, 2016; Houston, TX, USA; Houston Astros relief pitcher James Hoyt (51) pitches during the seventh inning against the Toronto Blue Jays at Minute Maid Park. Mandatory Credit: Troy Taormina-USA TODAY Sports

Here it comes—-

james hoyt signed baseball houston astros

James Hoyt 7th inning Houston Astros

Pretty sure he’s telling the catcher that he needs that ball back to give to Matthew.

James Hoyt signed ball Houston Astros

Above three pictures credit from the Houston Chron

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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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