Monday, August 15, 2011

Love Doesn't Count Chromosomes

Love doesn't count chromosomes.  That's our team's theme for this year's Northeast Ohio Buddy Walk and it is 100% true.  Love does not look at our precious baby boy and notice the extra fold of skin behind his neck.  Love does not notice his "sandal toes" that are a tell-tale marker of T21.  Love doesn't really notice his almond shaped eyes--only their incredible blue color.  Love doesn't notice these differences because all love sees is pure beauty and acceptance.

I can't really describe what the past year of Joey's life has been like.  I'm working on it and hopefully will be able to put it into words before he turns one on the 27th, but in the meantime I'm feeling very emotional.  Very grateful.  Almost speechless as to what the past year has meant.

Our local Buddy Walk is on Saturday, August 20th-- just one week before Joey's birthday on Saturday, August 27th.  

To explain the support, the passion, the generosity of friends and family for Joey's All Stars is really difficult to put into words.  We have team members like Kelly, Jill, Maureen and Amanda who've raised hundreds of dollars by reaching out to their families and friends.  We've got friends and family who are coming out to walk and to help celebrate spreading awareness of Down syndrome.  

This coming Monday-- our neighbors and friends are having a bake sale from 4:30-7:00 pm to raise money for Joey's team.  They asked me about this idea and the fact that these awesome friends, who, oh by the way, just adopted their youngest son from Ethiopia this summer, would take time out of raising their four awesome kids to help raise some money for the Buddy Walk is just incredible to me.  They are an incredibly giving and kind family so it's not surprising at all-- but I get overwhelmed with gratitude for the acceptance we have found from our friends and family.  Dear Jillian, Dave and kids-- thank you so very much for your acts of kindness.

Last week I found out about not only the Bake Sale for Joey's All Stars, but I also spoke to our dear friend Maureen who is a stylist at Vaughn Morrison in Bath and she told me that thisThursday she is going to donate all of her tips to Joey's All Stars and that the owner of VM is going to match her donations.  I hear these things and my eyes well up and my throat tightens-- but not out of sadness-- out of joy.  Out of appreciation for friends and community and what it means when the village of your life comes together to support something that has become your everything.

This past year (and most of the year before it) has been full of ups and downs.  Highs and lows.  I don't know if I have ever grown so much as a person, a wife or a mom as I have in this past year.   
This past week has been full of incredible gifts such as those above.  In addition to learning about the Bake Sale and the Tip Day, we also received some awesome health updates for Mr. Joseph David!

We received an update from his Endocrinologist.  Although his TSH level was more than double the acceptable amount after his heart surgery, it is now completely normal.  Go Joey!!!  The thyroid issue is somewhat inevitable as it oftentimes goes hand in hand in people who have Down syndrome.  But that's okay!  For now he got the green light to move forward and wait another six months before his next check and that sounds like a small, but wonderful victory to me!

Following this good news we moved on to one of Joey's most wonderful and hard-earned milestones thus far---SITTING!!!

We've been working and working and working.  Here is a photo LoLo caught of him doing it this week, and looking oh so proud:

I cried--tears of joy, gratitude and to be totally honest-- a few tears of relief. Bubba is getting heavy.  His 20 pounds of love is getting to be a lot in that he wasn't sitting independently, which meant we were either holding him, or he was lying down, or he was in one of the chairs he is growing way too big for.

I've heard from other mom's who have children with Down syndrome how each milestone--each mountain will be all that much more sweeter because you have to work harder and dedicate your energy to them.  I had no idea, but now I know.  

Our last piece of amazing news to round out what was an overwhelmingly wonderful week was from our new eye doctors.  We had initially been told that Joey should have eye surgery for his Nystagmus.  (Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting in reduced vision. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern. As a result, both eyes are unable to hold steady on objects being viewed. Nystagmus may be accompanied by unusual head positions and head nodding in an attempt to compensate for the condition.) Initially his Nystagmus was very extreme.  We first noticed it at his baptism party and the next week he was getting an EEG to make sure it wasn't seizures.  Thankfully it was not seizures, but we weren't all that excited about being told he would need eye surgery soon after his heart surgery.  In fact-- the eye surgery all together seemed even more risky to me than the heart surgery.

We decided that just like we did with his heart surgery, we had to get a second opinion.  We saw not just one, but three new eye doctors and it was a very interesting appointment.  The first doctor told us that the day would be "controversial".  Great.  Just what we were looking for.  While his eyes were dilating, we sat out in the waiting room and reassured each other that at the end of this appointment, Joey would probably need glasses and possibly still need the surgery.  This is called the "extreme" game.  You sit in doctor's waiting rooms and to prepare yourself, to get your defenses up, you prepare for the worst case scenario and then it all doesn't seem that bad.  I'm pretty sure it's not a healthy exercise, but it makes us feel better for some reason.  Like we can face any obstacle or any new issue that will arise.

Joey was finally examined by the first two doctors and then they called in the specialist-- the man they told us, "Walks on water, but doesn't act like it."  Cool!  Our final doctor sat down and told us, "Your son thanks you for bringing him here."  The three of them said that Joey's eyes are doing wonderfully despite the Nystagmus and that it was unconscionable to suggest Joey have the Nystagmus surgery the same year of his heart surgery and that they would probably not ever recommend it. The "controversy" involved is that our new doctors do not at all see eye to eye (I couldn't resist....) with our old doctor.  We will follow up in 6 months to check his clogged tear ducts as well as his Nystagmus, but for now... for now we are going to enjoy all this good news in one quick week and we are going to celebrate his milestones as well as his improved health.

Happy Monday!

1 comment:

  1. Yay! So happy he won't be having surgery any time soon (or hopefully ever!) What a wonderful celebration of this last year. I am amazed with how much support you're getting for his team. People are wonderful when given the opportunity. Go Joey!


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