I love our Down syndrome community so much, but sometimes I really really hate it. Recently our community has lost some perfect little souls. Some were due to crazy freak accidents that could happen to any one of our kiddos, others were taken by cancer, and a few succumbed to cardiac issues post open heart surgery. In such a short period of time our community has been mourning one precious child after another. It’s not fair, it’s heartbreaking, it’s completely and utterly devastating.
My heart is completely shattered for the parents and siblings left behind. It’s unimaginable the pain and sorrow those families are enduring.
It’s the constant loss to our community that makes me want that giant bubble to put Jaxson in. Everything is hitting so close to home and my paranoia goes through the roof! Some things you can control but ultimately it’s not in our hands. Whatever will be will be.
In light of Jaxson’s recent anemia scare we’ve had a couple people tell us that they feel so bad for us. We’ve been through so much already with Jax and it’s just not fair. While I am thankful that his ‘issues’ are being recognized, we feel the complete opposite.
Jaxson is HERE. He wakes up every day with a giant smile on his face despite how crappy he must be feeling. Every morning we get to sit sipping our coffee and watch him flip bowls in his fire truck (don’t ask). About one thousand times a day we are subjected to his super tight hugs around our neck (it’s a tough life!!), and are on the receiving end of his open mouth sloppy kisses. We get to bask in the joy of watching him learn new signs and see the pride that washes over his face when shows us that he knows how to ask for something or that he can make a sentence using multiple signs. We giggle at his toddlerhood every night when he asks for more books, and flips out when we tell him “no more books it’s time for bed”.
We will take and continue to take every single diagnosis that comes his way in stride. Open heart surgery. Waking up with him one bajillion times a night because of severe sleep apnea. CPAP turned BiPAP – still waking up one bajillion times a night…. Therapy after therapy, temper tantrum after temper tantrum from said therapies. Eating issues. Sleeping issues. Did I mention sleeping issues? One more time, sleeping issues. Severe anemia. Reoccurring severe anemia requiring a blood transfusion. And now here we are on the brink of a Celiac’s diagnosis. So a possible lifestyle change, an increase in our grocery bills, and being hyper-vigilant of the foods the 3 of us consume.
All within 2.5 short years. We know there will be more to come, and thats ok. We didn’t sign up for it by adopting a child with Down syndrome. We signed up for it when we decided to become parents. PERIOD.
So like with every past diagnosis we will continue to take each new diagnosis with a positive outlook because JAXSON IS HERE.
Life is too short….. My community has taught me that