So you have probably noticed that I have been talking about my concerns for Avery this winter. Well it kit me today in the car. What if he goes into the hospital and does not come home b/c of another pneumonia for a cold or something respiratory. THIS IS A REALITY, people. This last disharge, they drs. do a very descriptive write up about his stay. There was alot in there about his respiratory decompensation in a short time and they FINALLY mention that he was dx with LEIGH's disease which they have never written. This time when I was in, they gave me with choice of whether I wanted to bring him home and even though he didn't look great. They know he is pallative care now. Another depressing fact. Then you get all of the head nods with a look of "I am sorry" from the drs. when you say that he looks worse. Yet another reality.
It is inevitable and yet there is NOTHING I can do about it. I just don't know how I am going to handle it. Avery has brought so much caios to our lives but it is our caios and what will we do without it. I can't even imagine it. It will be so sad.
When you get married and have babies all you think about is the wonderful things but never do you think that you will bury them way before their time. It sooooo sucks. It surely has given me such a new perspective on life and what I will and won't settle for. It is all about happiness which is NOT material happiness either but having good people around you and laughing and loving and doing good by others.
Anyway, this was my WAH, WAH of the day. You can pick your mouths up off the floor now. I told you it would be depressing. But it IS my normal. I will just love him with everything I have in my and do right by him is all I can do, RIGHT?
3 comments:
Sorry I wasn't home last night when you called. Motherly duties call ;-). I'll call you today (probably this afternoon).
Sending you peace and light, N
I'm just reading your post, which makes me feel sick with dread and sadness at the thought of any of us loosing our children. I can't imagine being reminded of the possibility of it constantly, as you guys are. We're thinking of you all, and hoping for good outcomes. I'm sorry that that so often feels, and maybe is, against the odds. I hope not this time, this soon. God Bless. As always, let us know if we can do anything, anytime.
Alison.
I can't imagine Nicky..........the metaphor that life's journey parrallels the change in seasons with life, birth, beginning in spring and then ending in the winter. I hope Avery will be able to live through more rotations of the seasons. I was so glad you called me the other day. I got off the phone and said "Steve, a friend called ME!!! I have a friend!!" :) love, sonya
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