Days 351 - 355

I was reading back on little Brianna's Blog, at her final weeks, at the posts made by her mother- all so beautifully and courageously written.

I am not sure why I do it: read through other peoples tragedies, I mean. Surely on a sensible level it would be better not to submerse myself in their sadness, both past and present? Sometimes my head tells me that I am torturing myself, because it does make me so very sad... because it's so REAL! But maybe that's the point. Maybe I need to remind myself from time to time that Mikayla may be fine. But she's also not fine. And while I think I have the strength not to wallow in her "lack of fine-ness", I need sometimes to know that there may be a time in the future when her condition will reel it's head, and ultimately take her life. And we'll still be here... having to pick up the pieces. Maybe its also so that I can see that other people have been through such tragedy, and yet, have survived!

I think I am a better person because of Mikayla. Maybe not on the outside, but certainly on the inside. She has made me more understanding. Perhaps more compassionate. And stronger. It frustrates me sometimes- because it's been a year, and there is SO much positive in that... but everyone has kind of gone on with their lives. But ours hasn't changed. Everyday we are still dealing with the ins and outs of her tragic disorder. Her T18 hasn't gone away. And while I celebrate her little milestones, and take the time everyday to love her... part of it is that I also carry this grief with me- knowing that I won't have the time with her that other mothers will get with their daughters. That I won't get to do the mother-daughter things that other mothers get to do with their daughters- and take for granted. And it hurts just as much now, as it did when she was born... I am just better at channeling that sadness.

And sometimes I can't help but wonder about tomorrow. Though I wish I could forget.

Miks has been quite well and happy the last week. This afternoon she wasn't great though. Vomitted quite a lot on her nanny (I was out)... and has a snotty nose again. This frustrates her, and she will shout a lot to make it known that she doesn't feel well. Also, the minute her eyes start getting clogged up, that's a good sign that she is getting grotty. Anyway, we're managing it, and I have no doubt she'll be fine :) Little toughie, my Mikayla.

Read this on Brianna's site: hope I am forgiven for re-posting it.... I don't feel like much of a saint. More often I feel like a failure. But I think my pregnancy hormones are largely to blame for my "Mona Lisa" attitude at the moment. Forgive me. I'll get over it... anyway, this is what I read:

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

I will say this as well: a common denominator I have noticed, amongst all these courageous mothers, is the amazing men at their sides. They are strong, loving husbands/ fathers, who love their special children unconditionally. And certainly in my case has been my rock when I felt I couldn't go on. I really honour and salute these very special men.