We're still making progress here. Aaron is making an attempt at his home ventilator this morning. He's on about a bazillion liters of oxygen (okay, only 12, but still...) So far it's been about four hours and he's holding on even through a breathing treatment. He's been asleep except during that treatment, and it may change things up when he wakes up, but so far so good.
We're still a long ways from home. Twelve liters is even too much to go to the floor. We usually have to be between 8 and 10 for them to even consider it. And the breathing treatment was really sad. I don't get it. Usually he absolutely loves the shake vest, but something this time isn't sitting too well with him. Almost every time it produces big tears and wracking sobs. So painful to only be able to hold his hand and tell him, "I know, I know, but you can do this."
Church today was thought provoking. The speaker started out by painting a picture of the Norman Rockwell. You know, white Christmas (had that!) family, good food, fun times, presents under the tree, wide eyes. Well, for me, and for several others there, it just wasn't what happened. Instead, it was a hard week, a really hard week. I don't remember seeing him so sick before, so miserable. Maybe my memory protects me, but oh, it was bad. And honestly, for a lot of others up here, it's been rough for them, too.
I LOVE Christmas. It's my holiday. I love the kids putting their presents to each other under the tree. The Christmas story being read, carols. Cinnamon rolls (with chocolate chips!) baking for Christmas breakfast, a Christmas ham on Christmas Eve with the leftovers reserved for snacking on through the next day. Wassail and hot chocolate on the stove. The beauty of the Christmas tree all lit up with presents that magically appear. The long lazy days afterwards where we just get to be together. In fact, that may be the part I miss most of all.
We didn't have that this year. Heaven willing, we'll get most of it on New Year's Eve. I'm praying that we're home by then. But we can't get back those days. They've gone on. And I have to be okay with that.
I ache for my other kids who've given this up, too. THEY voted to wait until we could come home to be together as a family. They put off their Christmas Eve and Christmas Day. I think they're often forgotten. So much focus on Aaron, on his needs, and they give up so much for him.
BUT, if I will but turn my focus to where it should be, I know, I truly know in my soul, that it can all be good. Learning to sacrifice for others deepens the soul, enlarges the heart. And they want their little brother there. At some future Christmas, our own Tiny Tim's crutch will lie by the fireside, alone and ownerless. I don't think they wanted to miss out on him being there any sooner than they have to.
I know that the Savior whose birth we celebrate, whose life is the whole reason for this season is there for us. It is through His atonement that broken hearts and souls are healed. Not only are sins forgiven, but wrongs to innocents are paid. He paid for them all. An INFINITE, without ending, sacrifice for me, for Aaron, for our family.
The special musical number today was "Come Thou Fount of Every Blessing." Every blessing, every single one, comes from Him. I need to stay fixed upon that. I will remember what He has done, and is doing for me. I will sing praise to Him. May He take my heart and seal it for His courts above. Oh, I pray, I will remember.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
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You got me with this one. I have lost a child, but suddenly and with so little pain to her. Bless you for all you do for him. He could have been sent to anyone and it turns out the mother of 9 was the most attentive mother he could have. Amazing. Aaron and your family are in our prayers.
ReplyDeleteThinking of your children put tears in my eyes. Yes the siblings of special needs children like Aaron, like my Lilly, like so many others - make huge sacrifices. BUT ... God uses it in their refining and in the perfecting of them. They are all changed. But for the better. What a blessed Christmas you will celebrate again with your children when you and Aaron walk out of the hospital. Aaron remains in my prayers.
ReplyDeleteTrisomy 18 unfortunately took my baby girl 2 days before she was born, but church on sunday too for me helped me see the healing power of Jesus christ to get through all of this. You gave me hope in my pregnancy as I followed your story and he gives me home I will have her again. I hope you continue to feel of his peace as a family
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