Structured VS. Child-Led

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So, for the third time in two weeks one of dd's therapists gave as "homework" 10 minutes of structured time about 8 times a day.

Somehow I'm supposed to add one more hour of "structure" to the day of a child who already spends 5 hours hooked to a feeding pump, at least 2 hours in therapy, and approximately 2 hours buckled in a car seat heading to therapy . . . . OH, and then, because she's two she's gotta take a nap. And how about family time in the backyard playing with the doggies and daddy?

Please tell me how this is supposed to work.

What the therapist is ten minutes on a start-to-finish project like stacking and playing with blocks, then cleaning up. Or matching colors on a peg-board or putting the appropriate face parts on a Mr. Potato Head. I don't know if I have the attention span for that!!!

Problem is, A is so, so independent. I like that about her, but I do see (as I'm peering through the therapy and school windows) that she's more easily distracted than other little ones her age. She doesn't like to finish stuff - a whole book is too much most of the time.

Best I can do, right now, at least, is read to her while she in the bath (after the screaming bathing part). I can *almost* "command" her attention then.

Typical?

A. has Pierre Robin and, therefore has an atypical cleft palate (is there actually such thing as a typical c.p.?). Anyhow, yesterday we went to see her craniofacial surgeon to discuss her upcoming jaw distraction in September. We also asked about the time-line for getting her palate repaired and were told that the tissue on her palate is in bad condition due to poor previous attempts to repair. He said that the only option at this point (beyond an obturator) is to sew her tongue to the roof of her mouth for (I think) 3 months and then slice off the part that has adhered to the palate to create a new palate.

Has anyone had this done, or even heard of it?????? Doc says it's pretty awful. And when a doc says it's bad, I worry. Would it be better to just leave the obturator in forever??? Anyone have experience with obturators?? With jaw distraction??

Working it Out

I've been thinking about my previous post, and, instead of changing it, because I think it's important for me to chronicle this journey as I'm experiencing, I'll just add an addendum. What I meant was that we were not actively seeking to adopt any child before the advent of A to our lives. We feel so blessed, though, with the opportunity to give her a shot at life. She was NEVER going to be allowed to go back to her BM because the court was going to make sure that that would not happen. What we did for her and for her child was to ACTUALLY MAINTAIN AND PRESERVE their relationship. I think it is a gift.

I AM her mama now. Legally and practically. The other person is always, always welcome to be with her daughter when it's appropriate (she is not allowed, by the court, to be alone with her). And she will ALWAYS be her "first mama" - in fact, I don't care if dd calls her mama also. My heart is very open to this girl (my sister-in-law). I have known and loved her since she was a baby. That can't and won't stop just because of these circumstances.

I know that I have issues to work out for myself. All mothers have their lives changed by becoming mothers. I just had ZERO, literally zero, preparation for this particular change to my life. A requires an even higher level of care because of her medical issues - many of which have been gravely exacerbated by her BM's neglect. I'm still learning how to cope, and it would be a comfort if A and her birth family - MY family - would acknowledge me. Sorry if that seems selfish. Perhaps it is.

I know that A loves me. I know that I have improved her life. I know that I am her mama.

Correcting A Therapist - Ick!

Yesterday I had to ask my A's PT (physical therapist) to change the way she spoke about dd's posture and legs. She tells dd to "sit pretty" to correct (necessarily correct) her legs. It had been gnawing at me for a couple of weeks because I don't want dd to be told that what she does **naturally** is **not** pretty. I know the PT doesn't mean it in a negative way, but I so think that, especially as she's developing her own language skills, the language that is used to and about her is so critical. I don't mind people saying that she's pretty, it's not that I have a problem with that. Does this make sense?

So anyway, I asked the therapist to not use pretty as a litmus test. She was really sweet about it, but she did look at me strange.

I'm actually pretty proud of myself!

From the Peanut Gallery

I find it kinda funny in a sad sort of way, that when people are like "oh, I'm so sorry that your daughter has problems." And people often notice dd's trach and humidivent and ask, "Will she get better?" It really gets to me. I usually say, "Oh, she's actually fine. She's not sick at all, it's just how she breathes."

I guess having a child with special needs is kind of like being pregnant: people feel less inhibited about touching and making comments. You know, like how perfect strangers feel just fine about rubbing a preggo tummy.

Usually, I just try to blow it off, laugh at the goobers. But, as A gets older and becomes more aware of language I think I will be more fierce about cutting people off. And that's where it will get hard. I don't want her to have her attention drawn to her disability. I don't want her to ignore it either. I just want, so badly, for her to roll with it.

She Won't Call Me Mama

Even though it's only been three and a half months, I'm getting a feeling that there is something beyond her low-verbal state that is making dd not call me mama. My 19 year old sister-in-law is her birth mother and we only have A she was taken into foster care. What I mean is that we were not pursuing adoption. However, we are so utterly delighted and so in love with our little girl.

Anyway, A hasn't seen her BM in the entire time we've had her, and she only saw her three times while she was in foster care (2 months). And yet, I know, just know, that A's thinking about this person who neglected her to the point of life-endangerment. It started with the the fact that A (who uses some sign language) uses the sign for mama to refer to my husband. And, though she will/can say mama as a sort of babble, she refuses to point at me when asked "where's mama?"

This is all so complicated because her calling me mommy has been an emotional issue for my husband's family (dd's blood family). They want to maintain the idea that A's BM is still her mama.

A loves me. She expresses that often. I just want her to love me as her mama. I'm really sad.

Sorry for the rant.

So Here's What Happened

I kinda had baby. Actually, had, is not the right term. I acquired a baby. So, if you're someone who has followed this blog (back when I was actually writing in it), you know that the irony of me "acquiring" a kid is rich. REALLY rich.

For years I struggled with the "I-want-to-be-a-mom-but-I-can't-so-I-don't-care-na-na-na-boo-boo" syndrome. And just when we had bet the farm on grad school, bought a house in a "bad" school district, and settled on spoiling our niece and nephew rotten as an investment in our future childless-but-in-a-nursing-home-so-who's-gonna-visit-us selves, Alexis pops into our world.

And we totally fucking love it!

She's Hatched!

It's a beautiful day in Knoxville, y'all. I'm sitting here in a tiny hotel room looking at awe at the tiny red-headed baby napping in a crib next to me. We went to court this morning and the state has given full legal custody and guardianship of A. We're stunned, elated, exhausted and really, really happy.

It has been an emotional week. Our social worker Tiffany was a regular Julie McCoy and had us hopping and running for three days straight. We got to spend some wonderful time with the foster family, which works with Youth Villages. A was their first baby to foster (for the past two months). They usually get older children. Foster Mom was just amazing. She completely fell in love with our little girl, and cried all day at court today even though she is so happy that A is going to get to be with family.

In fact, we have yet to meet someone who hasn't cried at the thought of A leaving their care. No joke. There's just something about this little one. She's an incredible fighter. Despite the trach and the g-tube, she runs and laughs and squeaks like crazy. She loves television, though we're planning on going cold-turkey off of that for a little while at least. Also, she looks just like K - in a good way.

Well, we'll write more later and will send some pictures soon. If you're tired of hearing our saga, please don't hesitate to let me know. I certainly don't want to bug anyone. We so appreciate everyone's thoughts and prayers that have been sent up for us over the past two months. Things like this make us so grateful for the wonderful friendships with which we've been blessed!

We're Pregnant, Sort Of!

Hi Friends,

K and I want to introduce you to A.M., who is, hopefully, about to become a member of our immediate family. She is our niece and has some medical issues that have made it difficult for K's sister to care for her adequately. We have already begun the process, but still have to undergo a home study by the Department of Children's Services. A is in foster care in Knoxville at this time, so we really hope that the home study can be done speedily.

Say a prayer for us as this is really going to be a life-changing experience. A has Pierre Robin Syndrome, which has caused her to have to have a feeding tube and a trach.

We are feeling overwhelmed, as you might imagine. But, more than that, we are feeling very blessed to have this opportunity to share our blessings with this sweet little girl.

Can't wait for you to meet her in person!

Surprise Mr. Prime Minister...I'm Here!

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Is anyone else just terribly embarrassed about the rudeness of King George this week? I mean, giving the Prime Minister (yeah, Prime Minister, dufus - ya know, like "head of a country" and all) of Iraq FIVE MINUTES to prepare for your visit? Not a very Southern-gentlemanly thing to do!

Here's a list of things that Mr. Prime Minister might have been doing that he would be disinclined to interrupt for a visit from King George:

1) having a root canal
2) laying on his bed contemplating the popcorn ceiling
3) reading an Ann Coulter book
4) getting a spinal tap
5) eating a baloney sandwich
6) posing for photos in the middle of his rubble-filled city
7) meeting with his "new friends" from Haliburton!
8) doing a live telephone interview with Rosie O'Donnell and The View girls
9) trimming his nose hairs
10) getting a back wax

But, NO, Georgie barged on in assuming that his Banana Republic's leader would just love to stand around blinking into flash bulbs and wondering if he looks fat with that fifty pound flak jacket under his Armani suit.

Ugh - it bugs me.