The never-ending story

Yesterday, I had my first break down since David was admitted. I called up to his room to chat with his nurse and ended up sobbing and sobbing. Like any parent, I want answers, and more importantly I want results. At this point it seems like they are doing everything they can and yet he’s still on just as much oxygen, with just as much pressure. At this rate, we could be in the hospital for a month! I mean, who hasn’t been battling a cough and phlegm for weeks now? I have! And I’m relatively healthy and have strong lungs. Poor David already starts at a disadvantage and has small, compact lungs. While he’s not regressing, he’s certainly not progressing and that leaves Jason and I feeling helpless.
David is happy, he’s engaging. He’s having dance parties with his visitors and he misses us. This whole stay may be “easier” to take if he at least appeared sick. If he had a fever and was lethargic and fussy, we may think, “Ok, he’s really sick. He needs to be admitted.” But he’s his happy, giddy self. He’s flirting and smiling and winning hearts each day. We miss him! We want him home.
I will not speak for the rest of my dear Down syndrome community. The following is simply my own personal views and experience. This is the part of Down syndrome that is hard. David is not hard. David is a delight. And there are many kiddos with Down syndrome who don’t have the health issues that David and others have. For them, the difficulty is with IEP’s and inclusion and milestones. And I am sure that is hard. I’m sure that’s exhausting and frustrating. But today, I would take six more hours on the phone fighting with Medicaid (which, sadly, is also part of my norm) over another day in the hospital. Down syndrome is nothing like I thought it would be. It is more rewarding and more challenging than I expected. But it’s the health issues that provide the greatest challenge. It’s the idea that this could be forever. Not a lifetime hospital stay, but we could expect to be hospitalized at least once a year for life! That’s exhausting.
Today, keep praying for us. Pray that David turns a major corner. Pray that all the suctioning and oxygen finally click and his body starts to heal. Pray that Jason, Ella & I can continue and be encouraged. Pray for our rest, health and bodies (we’re all a little sick) and pray that this is David’s only hospital stay in 2015.
“The Lord will fight for you; You need only to be still.” Exodus 14:14

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