Thursday, October 4, 2012

Her Mama's Heart

This post will be honest and raw. You may read somethings that surprise you, especially if you've never been here before. And if you have you may never have had these feelings or you did and can relate. This post is about feelings, thoughts, questions I've had since her birth.

As I've said in earlier posts we had no idea to expect Alara would be without her hand. And the moment when my husband showed me was one of total emotion. I was completely taken and in love with her already, from the moment she was held up for me, and cemented as I looked into her eyes. I was so over come with joy and gratitude that she was the little girl I was longing for (yes I would've loved a little boy too, but in my heart I so wanted a girl). I was in birth bliss. And then there was sadness. A deep and protective sadness. And the thought of "Why?"

Why her?
She already has so many obstacles to overcome. Coming from a large family and one that can barely scrape by. She doesn't not have the advantage some do. Growing up without a physical difference is hard enough in this family but then to add a disability like this? Why choose us?

Why us, now?
We were already struggling with great hardship- moving 900 miles, my husband working as a chicken catcher (barely), a house that was barely habitable, just managing to keep the electricity, water and heat going, a son just diagnosed with Asperger's syndrome, fighting the local school system for services that don't exists,  a marriage on rocky ground, and a mom hardly able to keep it all together, no family or friends locally to help. Why another thing to add to the count? Another worry?

Maybe having known before hand and preparing mentally and emotionally would've been a benefit. But in those moments and first days- there was just so much emotion. She was absolutely perfect, and this family accepted her as her. But my mama's heart (like a friend calls it) ached for my beloved baby girl. I don't want to call it pity exactly but it's a close feeling. A great sadness, a great hurt. You want everything to be perfect for your children. Want to protect them and have an easy carefree life. I couldn't give that to her.

I've since come to a place of peace and happiness. I don't see exactly why life is the way it is.. yet, or I may never. She has a lot more to overcome than others, normal, better off, even those like her. But she's already proving to me she can. She has strength that she shares with me, just in the things she does. It's in her eyes, her smile, her face, her determination, her giggles.

Maybe she'll be the little girly girl I envisioned- playing with dollies, tea parties, bows and dresses. Or maybe she'll be the tomboy my husband hopes she'll be. But she'll be who she is meant to be- and because of what she has to learn I know one thing for certain- SHE WILL BE STRONG! And pure. And True.

We had her name picked out for her long ago. Alara means "shining light" and True well that's self explanatory. But we didn't know how well it is suited for her. I, long ago- like years, had a dream of a little girl at a park in a white dress, blond curls, blue eyes, running toward me. She was alight in sun shine- glowing all around her. As she got closer I noticed her right hand was missing. That was all I remembered of the dream for a very very long time. Until a month after Alara was born. Then I had it again and this time the dream ended with her running into my arms. This dream revisited was her talking to me telling me everything is the way it's supposed to be, and she will be alright. (And no I'm not crazy, I have had dreams of this nature with some of my other children. And it goes along with my beliefs that children choose their families/parents before birth- they know what their life has in store for them and the choose anyways.)

Though things are better and the heart is mending- there are times when I slip. I have a thought, or I forget (how? I'll explain in a minute), or I question how she'll do something in the future.Or I look at her and my heart hurts some, for her.

How can I forget?
There are times when I'm getting her dressed and I'm trying to put her little arm in and I honestly forget and then suddenly remember. I think it's probably because of my older children. I'm just used to it being there on little ones. Similar to when you first get your hair cut, much shorter than you're used to, and you take that first shower and out of habit you pour enough shampoo/conditioner for your much longer hair. And then you remember. And then there are the times in the middle of the night she cries out and I reach for her and I go to pick her up and grab under her arms, only to have the one arm slip out of my hand. Then I remember.

There will always be a question I don't have an answer for.
How will she put a pony tail in by herself? How will she tie her shoes? Get her own shampoo? Is there anything special I need to do for her nub- especially in the winter? Will I need to use moisturizer, will it dry out faster? Now that she's crawling does it hurt for her to put all her weight on it? Will she build a callus? How do I answer her questions- why me? What happened? Do we want to use a prosthetic as soon as possible? Or let her decided and in the mean time let her learn to live life as she is? How do we handle the adults that stare and make rude faces and remarks? Even when I have the answers as to why/how this happened, will the guilt go away? How long? How do we get the services for her she needs as she needs them, when we can't get them for our first special needs kid? When do we move to accommodate that? What services will she really need? OT? PT? What tests are doctors going to want to preform on her? What is REALLY necessary? What do they matter? How will we afford a prosthetic when/if the time comes? So many questions. All the time there is a new one.

This a mama's heart. These are a mama's thoughts, questions, worries. I don't know if I'm alone in these or if others have had the same.  I know insight will come, along with answer and new questions and worries, and I'll try and take them one at a time.

Tuesday, October 2, 2012

Milestones (at 6 Months)

I wasn't sure how Alara's hand (or lack there of) would affect she reaching "typical" milestones. I know what to expect and when to expect (for the most part, as I also know how each child is an individual at meets their own milestones in their own time) them for "typical" children. I've done this before with my older children. I thought there may be some delays, or more "difficulties", in some aspects. Like sitting- most of my older babies used both hands to hold themselves up, at first. But with Alara's one arm missing her hand, and because of it, being shorter, I thought maybe it'd take her a bit longer to find her balance. Another crawling, I thought maybe she'd adapt and find an a-typical way of going about it. I mean, I thought it may hurt her or be uncomfortable, to lean all her weight onto her nub. (Kind of like me kneeling on my bad knees- I can but try not to because it gets sore fast.)

BUT she's passing up everything I'd thought!

Here's her list of Can-dos at/by 6 months:
(some of these would never have been affected, I just including all the milestones I can think of since birth.)

Smiling "real" smiles- 1 week (YES! not those "gas" ones everyone tries to convince you they are, but real "light up when she saw you" smiles.)

Giggles- 8 weeks

Started babbling- 12 weeks

Rolled from tummy to back- 2 months

Found hands- 2 months

Rolled from back to tummy- 3 months

Found feet- 3 months

Hold own weight when standing- 4 months

Sat propped- 5 months

Sat alone- 6 months

Scoot (backwards)- 5 months

Scoot (forwards)- 6 months

Got into sitting from tummy- 6.5 months

Up on all 4s- 6 months

Crawling forward- 6.5 months

Pull up to knees (from tummy)- 6.5 months

Feed self- we tried this at 5.5 months but she can't quiet keep ahold of the food yet and has a hard time picking it back up when she drops it, so we've started using one of those mesh handled feeder things and she's doing great with it. (Note: we are not fans of "baby" food, and use baby led solids/self feeding in our family.)

Hold a bottle- 5.5 months She holds it in place for short times but then it starts to tip to her right. (She has her left had.)

Pick up small "objects" (like a piece of dirt off the floor! LOL)- 6.5 months

Pass object from one hand to other- obviously this is something she can't to exactly and has to adapt to- she can grab something out of her right arm with her left hand. And she's also started raking things with her right arm over to her left hand (while laying on the floor, or seated at a surface) to pick up. 6 months

 Also not on typical charts- since about 3 months old she has grabbed things out of reach with her feet and brought them to her hand.

So as you can see she's adapting. I am completely blown away on a daily basis. She so wants to be up and running with her brothers and I don't doubt she won't be soon!