I would say that probably the most frustrating element, if you like, with Mikayla's condition is this: no rules apply. So there isn't a formula that works for all T18 babies. Each varies on a case to case basis. And certainly in Mikayla's case, it also varies on a day to day basis. It means we never know what to expect, and everyday that a challenge is presented is dealt in isolation to another day... even if the other said day presents the same challenge.
It's not without an attempt on my part to create some kind of continuity, even a slight attempt at a routine... the problem is what works one day, simply doesn't work the next.
It does make it difficult for us, as a family... because we really have nothing to "work towards" (or from)... but more than that, I think it must be so hard on poor little Mikayla. I get recommendations for Miks to see people for this and that... but I know that those said people haven't had dealings with T18 babies, and even if they had, she would still be a kind of "guinea pig"... and I just can't put her through that. So we plough along, figuring things out as we go. Sometimes it makes me feel like a bit of an island. And I believe no man should be an island.
It's also strange, because the bible talks about the Isrealites wandering in the desert for 40 years. That's where I feel like I am in some ways. My life is so rich with colour in some ways, and so desolate in others. It may seem like I am trying to attain perfection in my life... but that really isn't the case. I just want to be happy. Joyful. 2010 was a difficult year. What does 2011 hold in store for us as a family? Part of me longs to hold onto hope of good things to come... but the experience of 2010 has left me skeptical and despondent. It's a sad place to be.
Mikayla has been on and off lately... she is still an amazingly "healthy" baby.... so, she has no major sickly things to deal with. We never take her to the doctor. She's on no apnea mats or special chronic medication. She's had no operations.. and other than the apneas she had in her first couple of weeks, we have had no major medical scares to think of. It's miraculous, really. We certainly have the issues of her constipation... and I am at a loss on what to do there. We really have tried everything... and one day she's fine, and the next not... without us actually changing anything in her diet. It's frustrating, because I can see the discomfort it causes her, and I hate her having to go through that. But this is one of the things we plough along with! Also, lately she seems to cough quite alot while feeding... I have put it down to her being tired... she certainly seems to cough more, the more tired she is... perhaps she just doesn't concentrate as much. But other than that, in terms of her "health", she certainly is on top of the world.
I am so very fond of her. She is such a sweet, gentle little girl. She has become more cuddly, and seems to like being held in a cuddle, far more than she used to. Josh has been too sweet lately. He's such a caring little boy, and will do anything to make her smile, or calm her down with she's moaning. He's his MO in life! And she is very fond of him, often giving him bigs grins, which makes him grin straight back. I love it! But sometimes it scares me, to think of the future, and how hard this has been, and will be, on the boys. It's just so wrong!
I always used to say that "no mother should ever have to bury their child", and I thought I would never be the kind of person who could cope with having a child with a disorder such as Downs Syndrome (obviously in those days I knew nothing of T18)... isn't it ironic what life throws at you? Sometimes I think I should hope for all the bad, and then maybe some good will come my way... a kind of weird reverse psycology (*laughing hysterically*... like God could be fooled?!?!?!?).
So we continue to take the positive with the negative. And everyday I love my little girl more than the day before... and everyday, it scares me just a little bit more.
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