Friday, February 25, 2011

Tuesday, February 22, 2011

Closing a chapter

Like in a good book, when you finish the last chapter, you tend to feel a bit of nostalgia at leaving the protagonists behind, well that's how I felt today when I returned Zoé's walker, her "chacha" (the name we had given it after Zoe followed her friend Charlotte for the first time). I felt like it was a double- edge sword, feeling blessed that Zoé no longer needed her walking device, but also recollecting the first day I had come to CCS with mom and dad, and how I had cried when the clinic doctor had told me that Zoé would probably not walk, but that only time would tell...well, it's been a triumph, defeating the odds, contradicting what an other neurologist at UCSF had told me as well, that she'd be in a wheelchair.
I had prepared myself and I still think of it as an eventuality in the future, down the road, but as I like to say, we'll cross that bridge when we get to it.

I don't look at disability the same way, and even though I used to always feel very far from it, I now embrace the chance of knowing so many people with differences, with disabilities, with their own norms, we share a lot of them.
Now I read Dandelion, my special needs magazine where I read about helpful tips to survive the IEP, where I muse over the challenges faced by a family with a child with down syndrome.
Don't worry, I still read fiction and non- fiction for pleasure and relish sitting down with a cup of tea and The New York Times.

This weekend, Irina a longtime friend and old colleague of mine spent two nights at our house. Her son is on the autism spectrum and I remembered going to his baptism and a BBQ at their house before I ever had Zoé. I had no idea what she was going through. I hadn't the slightest clue of what her life was all about, and I can now so relate to what she is going through, the hurdles she's faced, the little victories we are now sharing on a daily basis-- when her son ate chicken for the first time, and when Zoé crawled for the first time. I watch those videos to remind myself how far we've come. Irina was such an inspiration, we shared our many tales and spent a lovely day driving around the bay, talking about our kids, about what natural remedies could help them (homeopathy for example), we talked
about the future and the hopes we have and share.

I last wrote on the blog a couple days ago and I now have time to write as I sit in the waiting room of Zoé's speech therapist.
It's funny and eerie the way we all look at each other. All the parents I meet, shy smiles, side glances and nods of understanding, as if we were all together in the same boat gliding over the seas of differences.
We speak the same language, it is called silence. Sometimes we don't need to say what is written all over our faces.
Sometimes the bold ones ask you what your child has, why he/ she is here, what the future holds, and then there are times when nothing needs to be said, where silences tell many stories.
On a different note but still pertaining to life with MMD (Steinert), which is the subtitle to this blog, I have decided to really get into an exercising regimen. I need to move my muscles as much as Zoé's. I am quite proud to say that I went on a 4-hour bike ride through San Francisco this week, with a friend, Olivier, who made me discover a side of the city I didn't know.
Symptoms are creeping and so I need to keep moving. Steinert sometimes exhausts me, but also Zoé's schedule, and the fact that I have to carry her a lot. It's 33 pounds of love, but also of "dead weight" for she doesn't really strap onto me. It takes its toll on the body.
I now try to take a nap when Zoé goes down to catch some ZZs. Reenergizing the battery, so I can keep on going for Zoé whose day finishes at 8:30pm when her Daddy puts her to bed.
I hope this post finds you all well wherever you may be. Have a lovely weekend. I will put some pictures on my next post.

Tuesday, February 15, 2011


Zoé is sleeping, David is in Florida for the week and I have time to write.
Zoé is exhausted, beat. She had school this morning, then a quick one-hour nap, one full hour of Occupational Therapy, a quick trip home to read a couple books, inhale a snack and run to her bi-weekly speech therapy session.
Last night she had aquatic therapy and it was the first time ever I didn't go into the water with her. I had prepared her for a few days, saying that I wouldn't be able to go with her, and she did great.
I took the opportunity of this 45 minute-reprieve to introduce myself to a wonderfully inspirational mom whom I had noticed the week before.
Her smile told many tales. We shared our kids' diagnoses, since it is always what brings us to these therapy sessions and she told me the tragic story of her little one, who was born healthy, and who at 10 month of age contracted a virus that threw him into a coma with major brain damage. He is now non verbal and is bound to a wheelchair. His mother was truly amazing. She was full of hope for the future, open, candid, brave, and I have to admit I walked out of the pool with a renewed sense of energy, ready to face adversity with an upright chin.
Remember I told myself, focus on what our kids CAN do, not on what they cannot do. She told me her little boy wouldn't be athletic, I told her Zoé would not be a ballet dancer. I have put that book on the shelf, right where it belongs, with neuro-typical kids. Zoé might enjoy African dance where you let your body sway with the rhythmic beats of the African drum, or who knows she might be the next American Idol. Her singing is astounding.
Today, unfortunately she didn't want to let go of me when it was time for her Speech therapy. I had to go in, coax her into performing her sounds: bah, humm, pah, in a toy microphone. It took quite a lot of imagination to have her make her sounds. Zoé has come to a point where she doesn't want to be told what to do, and besides, speech is hard for her. She really has to focus. The brain is sending one message to the mouth and we are asking her to "perform" sounds that are hard for her low muscle tone.
I know that once she matures, she'll have to make a conscious effort to pronounce words and be articulate in front of her peers.
Speaking of which, Zoé has a tendency to be somewhat of a loner. She has difficulty sticking with her peers, enjoying solo activities rather than coming together with her classmates when group activities are required.
I don't know what that means?
Is it because she was a late walker and wants to explore, again and again? Is it because focusing and staying put is too demanding physically? Is it because of the "vibes" she gets from her peers? Is it because she feels "different"?
February 26th, will be the anniversary of the first steps she ever took on her own. We watched the little video I took last year when she walked from the kitchen holding on to the cabinets to a chair that was 6 feet away!
I will never forget that day.
So again many questions, worries and inspirational conversations are what make my daily life what it is.
It makes it so much more special and in the end, will make me a stronger person, ready to tackle the new hurdles on this adventurous journey called MMD.

Thursday, February 10, 2011

IEP FInalization and other stuff...

So for those of you out there who are about to dip into the IEP ocean of fear, grief, and hope, I just want to let you know that it's not that bad. Well, let's say we have been blessed. Zoé has been taken in by a wonderful group of people including Special Ed specialists, educators, therapists and we are now ready to conquer the school system that will present itself in a couple years. IEP have to be "taken" every year until Zoé turns 18 and perhaps even when in college.
So far she's enrolled in 2 different schools and has 7 therapy sessions a week. The schedule is regimented and even though I felt overwhelmed at first, I have decided to think positive. I have to admit I hit a rough patch ever since we went to France for the Winter holidays.
I thought coming home would enable me to get through the grief of having lost dad, but it made it worse. I guess it's part of the 7 steps of grief. Being back home threw it all back into my face, for Dad was in every room, every bend in the road, every tree in the yard, every walk along the coast. It felt so new and yet so distant. It felt like he was with us in many ways but - oh the gaping void that nothing could seem to fill.
Then I came back and was thrown head first into the new schedule and did not have time to take a breather. Things have slowly settled and I have decided to take charge, to take time for myself so that I can be more focused for Zoé, more present for our family.

The positive attitude ebbs and flows, it comes and goes, and then sometimes I hit the wall again, but I know that it is not something I can keep on doing.
I constantly worry about Zoé, I wonder what the future holds, I remind myself that she won't be a ballet dancer, but she probably takes that from me, for I was never a very good dancer until salsa came along.

At the final IEP we mentioned the fact that Zoé brings a lot to the class, by her difference, she makes a difference. She has not yet been "adopted" by her peers, which is quite normal, her classmates formed a bond 5 months prior to Zoé's arrival. And kids will be kids.
They know that they have to be cautious when they come close, they see Zoé fall, they see her walking down the stairs tentatively, when she'd rather awkwardly run down the ramp. They probably notice that she still has to wear diapers, when nobody else does.
Zoé has been doing great at home, but bowel movements are a constant battle. I never though I'd cheer so much next to a poopy potty, but when she goes, it is a feast!
I have had to change Zoé's diet: no more rice, carrots, limit on apples and bananas.
We are now on prunes, prune sauce, brown rice, brown pasta, hyper fiber oatmeal, kiwis, oranges, everything that can alleviate constipation. Water, water and more water.

Zoé suffers from encopresis. I hope this doesn't make you queasy, but below is a little explanation of the problem...

Encopresis occurs when feces, or stools, are allowed to build up in the colon (or large intestine) over a period of time. This may happen because a child does not have regular bowel movements, or because the bowel doesn't empty completely on a regular basis. Over time, the feces that stay in the bowel become large, hard, and dry. At this point, having a bowel movement may be painful. Liquid feces often leak out around the hard, dry stool. The colon and rectum stretch. The stretched muscles and nerves give fewer and fewer signals to the child's brain about the need to have a bowel movement. This decrease in signals results in stool accidents, and the colon and rectum often don't empty as they should.

Zoé now knows to tell me when her belly hurts. We try a little exercise , we bend over and pretend we're blowing 100 candles off a birthday cake or deflating our belly completely. It's hard for her to really do it, but in time she'll manage, hopefully.
I have decided not to fret over the poopy issue, things will fall into place. Zoé walked her first little steps at 2 years and 2 months, she might be potty-trained when she's 4 and so what? She 's been doing things her way, following her own no rush.

Other than that, I have taken up painting again and keep on writing poetry as part of my therapy.
Exercising again as well, so that I can keep what little muscles I have...Zoé is heavy and I still have to carry her quite a bit, when she gets tired, when we are late...
I hope this finds you all well wherever you are, thank you for reading the blog, it keeps me motivated to keep it up to date.

Tuesday, February 1, 2011

Too many questions...

"Zoé has a lot of attention, doesn't she?" Her tone annoyed me. Funny enough, I get really hurt by people who constantly ask me about Zoé. David, who came to Zoé's school today, thought the woman was friendly and trying to start a conversation. I hurt me. This mom was asking who the 2 women surrounding Zoé were. So again, I had to explain that no, the one in the grey sweater was not an au pair, but an aid, or shadow if you will, and that the one in the red sweater was a physical therapist.
It was really hurtful, I guess I am too sensitive these days and just want people to leave us alone. Zoé has been getting attention since she was 4 months old and her first PT came to our little flat in NYC to this day. It is a constant feature of our life.
Zoé gets attention and I guess she's quite lucky. I should look at the silver lining and relish in the fact that, yes she needs help, and thanks to those two women, her aid and PT, Zoé will find her way and excel in what she likes to do.
My little butterfly. She is constantly moving from one thing to the next, from one activity table to another, from reading a book to singing a song.
That is her personality and I love it.
School has been really good for Zoé. She goes to a French Montessori-based school where there is good structure, and to an American Preschool that is play-based. I like the mix, it makes for a richer life to learn to apply when needed and to learn to choose what it is that she wants to do.
Then daycare where Zoé has tons of fun with her longtime friends. Where she is treated just like any other kid, ready to conquer the train table or the wooden blocks.