for the record.

I am only trying to help my daughter.

Our focus is on nothing less than helping our daughter grow into a responsible, intelligent, capable human being. To be able to live a full life. Have a job. Contribute to society. To share the love of God (Lord willing that she will grow to know Him and love Him). To laugh. To cry. To giggle with her sisters. To call us on the phone from college and ask for more money. To be everything that she was created to be.

Nothing more.

Nothing less.

And yet.....

Yesterday and today in a round about way, with much of confusion, we discovered that our insurance company (the Blues) decided to not pay for our Skype visits with Dr. MAL. To not pay for our ABA workshop. To request their money back for the payments they have already made for these appointments.

We have been getting countless letters from the Blues stating that they are paying for the visits. We (the parents) are not responsible for payment of the services rendered. So, we, the silly humans that we are, believed these written letters and thought we had made some kind of triumph in the world of insurance.

Apparently not.

Because, apparently, if you are an insurance company, you can demand to get your money back on things you already deemed covered and paid for.

Really, Blues, because I would love to get the last year of my life back. Can you manage that too?

Can you look my daughter in the eye, (assuming she can look you in the eye, she did have to learn that through ABA, after all) and tell her that you won't pay for her services? Can you look at her and tell her that she must live the rest of her life in her own little world without any regard to what is around her, because she was born that way? Can you tell her, that's too bad? "Sorry, kid, you got a bad hand. There is this treatment over here that has been proven to work but we don't cover that. Because we're in it for the money. And frankly, you're too expensive."

Because I can't.

I do not care what I have to do. My daughter will have a life.

If I have to live out of my car, in the dead of winter, just to give her a glimmer of the sun, I will.

Don't pay for her visits. That's fine.

She will prove all of your "doctors" wrong.

wondering.

I was looking through pictures today. I have a dear friend of mine who just had her baby boy and with me, and probably with all moms, the new baby makes me want to look at pictures of when my girls were babies. When they were so tiny. Just little 7 and 5 pounders.

But I have this problem when I look at pictures of when they were babies. I'm not too sure that I can even truly describe how I feel when I look at them. But it's extremely crushing to look at pictures of Maddy in her infant and early toddler stages.

Even in this wonderful time where she is getting so much better and her future is looking so bright. It is still exceptionally hard.

I see her bright smiles and goofy grins. She was such a beautiful infant.

I find myself searching those pictures for some kind of sign. Some kind of hint. Where was it? When was it? When did autism begin to creep in? Can I see it?

And I can. and it's not necessarily IN the pictures themselves but in the absence of them. There is quite a stretch of time that I don't really have any pictures. Of any of the girls. And I can make all the excuses in the world about how busy we were with 2 toddlers and a preschooler but the fact remains that the pictures aren't there. There are a few. But not the magnitude of them before and after.

Then there are the Easter pictures from last year and when Maddy hurt her finger. And I almost get physically ill just thinking about that time.

The case could be made that the wounds are still too open and raw. I haven't had time for real, true, healing from that time. What a dark dark time. I think it was by far the hardest time in my life. And I have had alot of hard times. Trust me. And I probably have many more to come...that's just how life is. Good times and hard times.

The Easter pictures are cute but you cannot ignore the vacant look on Maddy's face. The hollowness of her stare. The fact that she wouldn't even look at the camera most times. And it was so....instant. Yet at the time, it wasn't. But looking at the dates and the pictures .... she has a bright smile in January and by April she was vacant.

She had underlying issues all along. I know this. But seeing them in photographic bibliography...it looks so sudden.

Example: here is the two of us in January of 2010

Here she is in April of 2010. Yes a very cute picture and she just got a haircut. But I could not get her to look at me or the camera.

I do love both of those pictures. I think her Easter picture is cute. But I remember all of what wasn't happening in her while taking that picture.

I bring up this subject because every year I make a photobook for each of their grandparents and for us to have. I am not a scrapbooker (scrapper) and I don't have time to post pictures all the time. But every January, I sit down for several hours and create these photobooks for the prior year. And I love those books!

This year. It just wasn't getting done. And at first I blamed it on my very real and very busy schedule. But then today while I'm sick with the stomach flu, it donned on me. The real reason why I hadn't made those books yet.

I can't face last year.

Not yet.

It's gut wrenching to think of where we were. I KNOW where we are now. And I need to stay in the "how we are doing now" mentality and not focus on where we were. Not yet.

I wonder when exactly I will be able to deal with then.

And I don't think anyone can tell me the answer to that unless they have been where I have. I don't know any other mothers of recovered autistic children. How sad is that. Sad for all those moms out there.

I remember Catherine Maurice writing about how she would watch Anne-Marie after she had been recovered and how she would be searching for any sort of missed sign of autism. She wondered when she would stop doing that. Nice to know that's natural.

Maddy isn't 100% fully recovered at this point. But it is quite clear that she will be someday. 

Don't get me wrong. I am completely THRILLED beyond measure and THANKFUL beyond depth that Maddy is doing so amazing. This isn't any kind of pity party. Just the reality of the emotion of being a mother.

I don't know if I will ever be able to fully talk about the "dark time" and I'm sure all of my girls will ask about it. I can be thankful that I will able to have a conversation with Maddy about this time in her life and that she will fully comprehend and have an actual conversation with me about it.

I can be exceptionally happy with that.

the littlest of things.

Anyone with a child with special needs will tell you that you will quickly begin to rejoice in the little things. Tiny. Obscure. Little. Things.

And you won't really know when or what you will be rejoicing.

For us, we hit a recent milestone when we could finally put pillowcases on her pillows again. Sounds funny but Maddy used to crawl inside the pillow case with the pillow in it and rock against the wall or the side of her bed. We could understand her wanting that type of closeness but really didn't want her to suffocate in the process.

She has not had a pillow case on her pillow for well over a  year now. Sometimes we would catch her in her sisters' room in their pillow cases just rocking for the fun of it. So we had to be very careful about where she was and what she was doing.

Then a few weeks ago when she was sick with the stomach flu, on a whim, I put Justin's pillow in there so she could sit up higher and make her tummy feel better. I didn't even THINK about the pillow case. She didn't bother it. So I kept it in there. And then a few days later put a new pillow case on the other pillow and still nothing.

Last night I bought her new bedding for her bed. Pillow cases and shams and all. I was so excited to finally be able to "trust" her with her bedding.

It sounds so odd. I know it does. But it's so great.

This is what I mean by the littlest of things. Most parents don't get a thrill from buying their kids a pillowcase.

Lately she has let me put her hair in pigtails and gets overly excited when she sees her cute little piggies in the mirror. She loves them. Now what is still sort of a struggle is getting easier. She's understanding that I'm not trying to torture her by fixing her hair. I'm making her "pretty" and she can grasp what "pretty" means. In relation to a 2 year old, anyway.

It is so fascinating watching her come out of her autism shell. Every parent gets excited when their child starts to talk and interact with them. When you have worked as hard as we have and continue to work, it's even more thrilling. It's hard sometimes when she does things that we know she can do better at. When she throws a tantrum and we get frustrated but then have to remember she is still TWO after all. So that isn't necessarily an "autism tantrum" but just a normal "two year old - I don't want to do anything you tell me" tantrum.

All of this work...while we are so very tired...is very much worth it. For every little moment. Every little blessing that God shows us through Maddy. Worth it.

So we'll keep on. Worn and tired but inspired by something so little as a pillow case.