Sunday, June 23, 2013

Mae started speech on Tuesday. It went well, though, M, her therapist, did not make sufficient hay of the fact that Mariana no longer takes a bottle, has improved oral motor skills and has added the word, "Dada" to her words. M is not the touchy-feely-excited type, but she's good at her job, so I can't complain as much as I would like.

We did get the speech insurance evaluation after her therapy. I'm not going to lie, seeing on paper that Mariana is at a 3-6 month level of development in some areas was really difficult. But, as Scott pointed out, Molly said no words until 17 months. That eval was Mae on that day, that moment. No, she didn't verbally interact with her environment, but it was new and different. Paul didn't verbally interact with his environment the first day of school, so no big difference. And besides, we didn't want a positive report because insurance would have denied the claim! It's funny how your brain can acknowledge the truth, but your heart will lie right to your face.

June 13th was Dr. Jerome Lejeune's birthday. He is Mariana's chosen patron saint. (Along with Mary and St. Ann.) If you don't already know, he was the geneticist who discovered that Down syndrome was caused by the existence of 3 of the 21st chromosome. Usually the chromosomes, numbered 1-23, are in pairs. That is why Down syndrome is also called Trisomy 21.

I reflect often on Dr. Lejeune because his discovery led to a lot of conflict for him. He knew, seemingly from the beginning, that ability to identify Trisomy 21 would lead to the extermination of children in the womb. He fought the rest of his career against this, which is why I love him so much. He was brave and he stood up to his colleagues. It's quite fashionable, and was in his day, to reduce humanity to computations, but Dr. Lejeune wouldn't have that.

There is another reason I am grateful to Dr. Lejeune; I am grateful he made his discovery of what causes Down syndrome because it gives our family a solid answer.

Molly has an inflammatory disorder. There is no medical diagnosis for her condition, and we spent years trying to help her. We believe we've found an answer in nutrition, but there is no guarantee that what we are doing is everything she needs. We are at peace, in a way, but there is that nagging reality that there is no name for her condition, there is no diagnosis and there is no way to know if all we are doing is all we can do.

On the other hand, there is Mariana, who has a diagnosis. There are years of research on how to help her. There are years of parent-advocates who have demanded equal opportunity for their children. Scott and I have it so easy because of this diagnosis and these parents who came before us. We have only admiration and respect and gratitude for each of them.

Prenatal diagnosis is a hot topic in the Ds circles. Though we chose against it, and are pleased with our choice, I just can't come down on the side of saying it's wrong. I also can not say that information is neutral. The information we have because of Dr. Lejeune has brought so much peace to us. Given that Mae defied so many odds in the early months, we sometimes doubted her diagnosis. A photo of her chromosomes reminded us of the facts. We can know so much more because of Dr. Lejeune and we can accept and reject things based on facts, not assumptions. The fact is, having a child with Down syndrome will change your life. The fact is, your child will need intervention regardless of how the syndrome effects him. The fact is, your child with Down syndrome will have an extra chromosome. But the rest of the story is up to you. Your love, your willingness to be loved, your desire to be your best self, all of that can make you realize that your child with Down syndrome as valuable as the rest of humanity. Dr. Lejeune gave us a gift of truth, and he fought for us to realize the beautiful potential in our kids. His discovery is a gift to my family, and to all of us who love people who have Down syndrome.

Thursday, June 13, 2013

15 Month Update

She's a busy bee! We had the old 15 month check up that confirmed that she's still developing "typically", which is useless, because, not really. On a check list, yes, she's typical. In real life it takes a lot to get her to hit those milestones. Though the imitation and the attempting to care for us by sharing her things is not something we've really worked on. That is coming naturally. I think Mariana is just a social child. Where as before she would resist making changes to how things are done, we are watching an emerging need to imitate us. She really wants to walk, she really wants to eat like us, she is repeating in babble the sentences we say. I say, "You do it." in a sing-song and she says, "Do doo do." in the same tone. We are seeing some pointing, a love of books and enjoyment of some of the therapy play that she used to resist.

We have three teeth, one is the two year molar. I know, she's weird and she seems to be getting the matching molar on the other side. I'm very anti-medicating life situations, but ibuprofen is the only way she's able to sleep. She'll take 10-15 minute naps all day and then wake every hour at night. I'm totally losing some of my hippy cred, what with needing to stop cloth diapering for muscle tone reasons and all.

They asked me if she's scribbling yet, which made me laugh. Who gives a teething baby a crayon? Not this girl. But I have painted our awful stainless-finish fridge (the nasty, smudgy kind, not the good kind). I painted it with chalkboard paint, which, the dust is reminiscent of Amelia Bedelia. However she's able to scribble with me right there, and it's not a big deal if she eats the chalk. (Hippy street cred not too far gone...) It's funny to watch her siblings dance behind her containing their inclination to "show" her how to do it correctly. "Draw a kitty Mariana! Draw a circle!" When they get too overzealous she throws the chalk and kicks her legs in protest.

Protest is becoming a common theme with Mae. If she's not into something, therapy, the food you are offering, drinking from the straw; she'll kick her legs and arch her back. She has quite the persnickety temper, but I do see some emergence of an attempt to communicate before she loses her mind. (Yelling, "Nah! Nah!" is usually that attempt.) Watching her develop in this way I can see the desire to be like us in ability. She wants to eat with us at the table even though we eat dinner later than she does. She wants to be out in the yard with the kids, and she tries to get down during walks. The wagon has been an excellent solution to this particular problem since one of the other kids will ride with her. It's also going to be useful to have her push the wagon in the grass to practice walking forward. Currently, because she cruises the furniture from side to side, she tries to walk sideways.

Recently I was asked what I would tell someone with an adverse prenatal diagnosis. The truth is, I don't know. Mariana is my daughter, plain and simple. There's no grand dissertation I could write, no eloquent sentiment I could express that would convey the joy and love and commitment I have to this person. I'm glad she's here. I would miss her if she weren't. I did miss her, which is why when she was born life made more sense.

I'm not well equipped to help anyone in crisis over a Down syndrome diagnosis. Her diagnosis wasn't a crisis for me. This was my baby, the baby I needed and the family needed and our marriage needed and our community needed. The only thing I could ever say is that life without Mariana, through tears, frustrations, fear and exhaustion, would be less. I would be less. Everyone who cares for her would be less. We all know it, and I hope that one day she does too.