5 months old today!!
Who ever would've thought? You know, I have lived the past 5 months, tapping on deaths door.... but you're not tapping on deaths door at all! You're strong. You're a fighter. And while your prognosis (in terms of your disability) hasn't changed, and in fact gets more obvious as you get older, there are simply no absolutes. Statistically T18 babies do not live long... but some do. And who's to say that you're not one of those "some"?
And we need help. I am a recluse, Miks.... and it's tiring... I also feel like we're at times splitting our family up: I stay at home on weekends, cooped up watching you, and Russ does stuff with the boys (with my blessing and encouragement)... but it's not good for us as a family. I don't want to wake up, and realise I have missed the boys childhood caring for my disabled child at the expense of my healthy children.
I asked Luke the other day what he thought about you and he said "I'm just sad cos she's dying". He's going to remember these times... so I feel like we need to start finding more ways of countering that "sadness" with happy memories, in the hope that they will fill his memory pot. I love you, and your challenges are hard for us, AND for you. But they're also hard for the boys. I know they're resilient (thank goodness), and they're blessed with so many wonderful things, but I feel quite strongly that I need to make an extra effort to ensure that I don't overlook how much this is effecting them without us noticing!
You're so unpredictable at the moment. One night you'll keep us up for hours at a time, and other nights you'll be completely angelic. I try to keep a similar system in the evenings, to try create some kind of consistency, but it doesn't seem to be the prevailing factor in your "behavior"... talk about rolling with the punches!
I also feel like I want to be more than that person with the T18 baby. Don't get me wrong, I don't want to undermine your value... but I also don't want to undermine mine. And I just feel like I'm becoming "that sad person" with "that sick baby". People are so wonderful to us... but, oh, I dunno how to explain it.... I just feel like people must look at me and think "ah shame"... which is kind, so it sounds strange "complaining" about it... but I'd love people to see that I am also a happy person. That we have fun and laughs as a family. We're not that dreary place. And it's probably more my view of my situation than other people's that makes me say that, but I guess I just want joy again. To feel it, and for THAT to be the obvious thing that people see in me.
With all the wonder that you are. With your sweet gentle spirit, and gracefulness.... even with all that... it's been a long 5 months. I believe that you're going to be around longer than we were led to believe... and so we need to plan for that. Because living like we are, is not sustainable for me, and I don't believe is good for us as a family- and there are 5 of us in this family. Not 1.
Anyway, with that said, happy 5 month birthday my darling! It is worth celebrating!
