The Heart of Our Journey...

The funny thing about a CHD is that it doesn't end after heart surgery. There is more to it than that.The diagnosis and congenital heart disease is always part of your child's life. Sometimes there are additional hurdles to overcome. The experience is forever. The people you meet deeply impact you. The last 2 weeks have been a combination of all of these things and a reminder to us that we are very much on a journey. A journey of joy, fear, mixed-emotions, tears, and gratitude. A reminder that through this journey we have a lot of life to live and can't let anything stand in the way of it.

The flyer came home on Monday. "Trike-a-Thon". It made me want to cry. My mom had picked P up from school that day. I looked at the flier and said to her "He's not strong enough to ride a bike yet". We've been working on it at home and his sweet little body just can't quite make a rotation and turn the pedals yet. It broke my heart. I read over the flier and it sounded like so much fun. Every kid was to bring their bike and helmet to school and they would get to ride it around the school and help raise funds for St. Jude's Children's Research hospital. Most kids I know P's age can ride a bike just fine. I even saw one friend's facebook status this week where their little girl who is P's age can ride without training wheels. He's not even strong enough to make a rotation of the pedals.
We've been aware that Pierson had low tone since November. He's been receiving occupational therapy since November and has made mega strides but he's still not where a child who is almost 4 should be. I think because he's doing so well in every day life I forget that all the things he can do so well he has had to fight for. It's not until something like this comes along that I feel that dagger and hurt for him all over again.
So I'm thinking: what are we going to do for this trike-a-thon thing? The good news is that he doesn't mind sitting on his bike and just scooting it with his feet. And then my head goes to, but will he mind when he sees all the other kids speeding by him pedaling their bikes? So I've been thinking of that all week...
Wednesday I took Pierson in to get his hearing rechecked by the school district. I took him in for an early childhood screening in the fall. He did great on everything but the fine motor skills and hearing. They told me his fine motor skills would improve soon (which I knew in my heart was wrong - so we sought private occupational therapy) and to come back in April to have his hearing re-screened. When we went in we met with the woman in charge of early childhood intervention and she said she wanted to re-screen Pierson completely. I agreed and she did the testing. They had changed testing methods since the fall. Pierson rocked pretty much the whole thing. His IQ is above average (so no excuses for not making A's mister!!) But... Yeah, there is a but. I got to sit across from another specialist and hear more bad news. It's not that it was new bad news, just I think hearing it again is like picking a scab on a deep wound.
She explained to me that Pierson is behind in his fine motor skills. I'm thinking, well, yeah I know that. And then she started talking about how Pierson will qualify for services through the school district -- and how she wanted to do a second round of testing. I had to work hard not to cry. We know he's behind and he's made a lot of progress, but I think hearing it again, from someone new was hard. Whether this is just physical from CHD and heart surgery or he somehow won the jackpot of neurological complications from undetected congenital heart disease is yet to be determined. Could be a combo of both. I think it's easy to forget how very very sick Pierson was for a long time and how close we came to losing him before we even knew he was in danger.
We will do whatever we need to do to get Pierson where he needs to be. Occupational therapy once a week privately, and once a week through the school district -- let's do it. Accommodations when he gets to kindergarten? You bet, whatever he needs to do. We know that life has been harder for Pierson than for most kids so far and that in many ways it may always be. We look at this as an opportunity to teach him his strength comes from the Lord. There are no excuses, no reason he can't do anything he wants to do. No reason he can't push himself to reach his full potential. Working hard never hurt anyone. It builds character. This is a chance to show him that God is bigger than any challenge he may face. And I swear  if anyone ever tells him he can not do something they better hide or face the wrath of this mama! Pierson's name means "strong" -and that's exactly what he is. I think in the end, a little challenge makes you stronger. Giving up is not an option.
Honestly, we will take Pierson having these challenges to overcome over what many other families have to deal with. Some heart families have children who can't walk on their own, eat via their mouth, or even breathe on their own. Some heart families have empty arms. Yes, we'll take these challenges and count them as blessings.
Now for the fun stuff!
We have had so much good in the last few weeks! We got to go to a Frisco Rough Riders game with our CHD support group. We had a blast. Pierson really enjoys baseball and our seats were great. He also loved the mascot. He had a pretty good conversation with him, but we couldn't quite hear what he said.

Sweet mommy son picture courtesy of world's best husband and father

P with the Rough Riders' mascot

We were also blessed to get to go have a super fun night at Sigma Alpha's Whole Hearts Foundation black tie dinner. These girls have done a phenomenal job taking on the cause of CHD awareness and raising money for the Whole Hearts Foundation. We sat at a table with two other heart families and an adult CHD survivor. We also met two young men from Sigma's brother fraternity BYX who are CHD survivors. One is Sigma's president's fiance who has a 3 chamber heart and TGA. Then we met another young man who had a CoA like Pierson. He had his most recent surgery 2 years ago before he started college. This was his third surgery. Both of these guys were doing great and living it up at college. It was so encouraging. We had a blast with our newest heart friends. What a precious couple. Their little girl has TGA -- and heaps of cuteness! We were talking about how encouraging it is to know that God made our children just the way they are on purpose. I have remembered that a lot this week. God made Pierson face the challenges for a reason. He made Pierson capable of handling these challenges. This is part of his greater plan. I've clinged to her wise words a lot this week.

Two of my sorority sisters. Cat (left) has a son with HRHS and Rachel (middle) was born with an ASD.

P and his soccer trophy. He is oh-so-proud of it.

Icing face

Sweet boy kicking his ball