May 27, 2011

Nie Asks

I hate to bump my last post about Ainsley saying her name but I'm going to. I don't have a lot of time to follow everyones blogs but one I've been following for a few years is NieNie Dialogs. We may not share the same views on religion or politics but I admire her sense of style and find the way she loves life and still does so much, in spite of her accident, to be very inspiring. If you don't know her story check it out. This week she asks readers what is the favorite photo you took this week and this is my answer.

Lately I've been feeling life is passing by too quickly. Some days it feels like my 10 year old, Evie,  is on the verge of turning into a teenager. So I was very delighted when Wednesday I was distracted from working on the computer by the sound of my children and turned around to find Evie had orchestrated an elaborate play theme like she has since she was little. She was dressed in a black leotard and twirling a chop stick "baton", Adrian was helping Ainsley stand so she could shake the pompoms and together they were doing a cheer (maybe for Adrian's baseball team, the Yankees?). It was SO great to see Ainsley participating in the play and having such a wonderful time just like any other kid. A great moment! Plus she sure looked cute in her "cheerleading uniform" with her hair up in pigtails! I love that my kids have this type of imagination and can still play the way kids are meant to play and that my oldest baby isn't quite grown up.....yet.

May 24, 2011

Ainsley Says Her Name

For awhile now Ainsley has had a handful of words she says: Mamma (which is pretty good), more, up, down, all done, no, yes, Dadda(maybe). The newest addition at the end of April was her name.  Usually she signs while she speaks, which is how we know for sure what word she is saying.  While it may be difficult to understand the actual spoken word the intention is clearly there. In this case the hand on the chest meaning "me", while she says "Ainsley." We are SO proud of her! We hope that this is a sign that one day she may speak clearly enough that other people can understand her. Here it is on video. Enjoy!

May 19, 2011

Happy Birthday Steve!

Yesterday was Steve's birthday. We made his day special because he sure deserves it. Some dads don't like to do the dirty work of raising kids. Steve will. And with a child like Ainsley there is extra "to-do". In addition to all the regular stuff, which there is quite a lot of, he also helps out with the trach care & suctioning, diaper changes, tube feedings, and equipment changes. Thanks honey for all you do! We'd be lost without you.

After driving back over the bridge after ballet class we had a simple dinner at home. Flank steak, baked potatoes, and salad. Steve's pick.

Of course there were presents. Steve got a much needed infusion to his wardrobe, an advantage of finally having more clost space. Life is pretty good for the man of the house.

And of course for Steve's birthday chocolate cake is always a requirement.

You know how I've been saying Ainsley insists on having some of everything we have? 

I mean it. Check it out. Every utinsel, type of food and condiment. And she's getting rather insistent too!

Of course she doesn't eat the butter or the baked potato it goes on. But it's cute how much she wants to have and do the same as the rest of us. Sometimes it's a little heartbreaking. We often spend a good portion of our meal picking food out of her mouth but we have to let her try. She's very good about making it clear when she needs help with that. If I felt she had the muscle tone to eat all her food orally I would push to get her into a feeding program to teach her to eat. For now its baby steps.

During the evening she impressed us with her cruising skills. We've been doing a new "PT" activity that I thought up. We are standing while dancing and exercising to DVD's (think Elmocize or Mommy & Me) to work on standing balance and strengthening. I even tried the AFO's but after a few sessions she no longer needed them. In a few short weeks it's really made HUGE difference as you can see just from these photos she is willing to take more risks and is much more steady. I only wonder if I'd had a PT suggest this activity years ago what she might be doing. My theory is she's been afraid to fall but this new activity has given her confidence. The only trouble is she wants to "do a DVD" all day long. That sign she knows VERY WELL. She is so adorable and hard to resist it's so hard to say "not now".

 Not that I want to encourage my children to use my lovely bay window as exercise equipment. Adrian got in big trouble for trying to use the window as a climbing wall. Ainsley does get special treatment....For now. 

 Have a good weekend!

May 7, 2011

The Myth of The Perfect Mom

Today I ponder another Mother's Day and all the emotions it stirs up. I was adopted and so my feelings are complex. When I was a girl and times were tough between me and my mother (like they often are) I imagined that life might be so much better if only I was living with my birth mother. She would be the perfectly loving and kind mother that you read about in books and see in the movies. The ever sacrificing and loving type that was always there for her child with kind words and support. When I was in my early twenties I found my birth mother and started a relationship with her. I soon realized that though it was wonderful to have her in my life that she could not be a mother to me in the same way that my mother is because I was now an adult. The history was not there. The taking care of skinned knees, the fixing of meals rejected, the fights over what to wear, the rebellion and misbehavior she didn't deal with. In our fantasies mothering is always a joy. In real life it is a lot more than that. In real life I wonder how many of these mythical mothers there are. We mothers are in fact, human beings with faults.

By default we carry with us all the baggage of our lives before we were mothers and try as we might to be different sometimes we carry on the mistakes of our mothers, as they did their mothers before them. Or we find our own ways to make mistakes. In the same way that trying to be a perfect person is unattainable, so is being a perfect mother. Yet the myth persists.

Being a mother of a special needs child and one with medical issues is tough. Some people look at us and think we are supermoms or heroes. But we are not martyrs. We did not choose this. Most of us fight tooth and nail to deny our membership into this special sorority. We rail against the suffering our children endure, sometimes unable to accept the obvious because we want so desperately for more for our children. And it hurts. We are, in fact, ordinary people from all walks of life. We have shortcomings as mothers, like all mothers do. And I think many of us feel we are failing a lot of the time. In addition to the cookies not baked as often as we'd like, the moments not savored, and the intended craft projects that may go undone there is the nagging questions of "what more could I be doing for my child", I should really work harder on X, Y or Z. Or the other kids aren't getting enough. Or, dare I say it, the resentment we sometimes feel over the sacrifices we make to raise our children. In reality I think these are things all moms face. We must recognize that we are HUMAN, and intrinsically not perfect.

I always try to remember that our jobs as mothers are to give our children roots and wings. To prepare them for their place in the world, whatever that may be. To allow them to be themselves. And that, when asked, most children just want love and acceptance from their parents. I tell my children every day that I love them. Periodically I ask "Do you KNOW that? Do you FEEL it? I want you to feel that I love you." Whatever else I do wrong along the way I know if in the end they feel they were loved I've done my job well. Not perfectly but well enough.

Happy Mothers Day everyone.