The Kindness of Strangers

I forgot to mention a terrifying event that occurred this summer while we were in France for our annual, or bi-annual trip "home". Zoé got seriously ill with laryngitis, sort of croup like. She sounded like a barking seal, with the deepest and harshest sound I ever heard coming from her tiny airways. The powerful sound really scared Zoé, and before we knew it she was suffocating, choking on mucus and vomiting.

I didn't think twice. Mom, dad and I rushed her to the emergency room. Again, I was sent on a flashback terror of the first night she spent in the NICU after her birth. I felt so vulnerable, but I knew Zoé would feel my vibes, so I kept my fears in check and decided that soothing her was the only thing I could do.

After waiting for things to fall into place, I sent Mom and dad back, knowing that at this point I was the mom in charge. It was a weird feeling, once you step on the other side, feeling for your own child and then seeing your own parents worrying. I wanted them to go home and rest and show them that I could take care of things. That I was in control.

I never thanked the nurses in the emergency room enough: their kindness, their devotion, dedication, care were truly amazing.

The head nurse asked me about Zoé's "routine" to see what they could do to help alleviate her pain and fear of this strange neon-light room. I said that the one and only thing she loved was music, or singing. I had noticed a cassette player in a corner of the room, but needless to say we din't need one as the Head Nurse started singing sweet melodies to Zoé as her assistant put the adrenaline-cortizone filled mask on Zoé's mouth and nose. Zoé instantly managed to settle down, lulled by the French songs I've been singing to her since her birth.
I chimed in and so did the two other nurses and before we knew it there was a magical choir in this neon-light cathedral of tubes and machines, heart monitors and oxygen masks.
It was quite surreal.

After two more rounds of oxygen masks on Zoé, she feel asleep on my chest and they transfered me onto a wheelchair so that we wouldn't wake her up.
We were then administered to a room within the hospital where Zoé shared a bedroom with a little boy named Yuri. I "slept" on a cot next to her bed. Machines kept beeping the minute Zoé would turn, the cords monitoring her oxygen level wrapped around her body.

In the morning an appointment had been scheduled with the social worker to see how we would go about paying for the cost of this night in the hospital. Needless to say, we all know that children are priceless :-)

The social worker was also an amazing lady, full of compassion and respect.
I left her office with the bill, and a handful of cuddly animals for Zoé who had been rushed to the hospital with nothing to sooth her restless night and naps in the hospital.

Again, the kindness of strangers.

I didn't feel like Blanche Dubois in Tennessee Williams's Streetcar Named Desire, but I knew I could depend on the gracious devotion of all the wonderful people I met that night and day in the hospital.

I must admit, having sent Mom and Dad home the night before as I put my armor on, I was glad to find them back home the next day, for there is nothing like home and parents who love you unconditionally. Their kindness and love is the best medicine.

To know or not to know

To know or not to know.

A dear friend of mine just told me that her daughter was diagnosed with "Rett Syndrome". I don't know whether it is worse to know or not to know. She was waiting for the doctors to tell her, and a diagnosis was given. It means that now she might be given the tools she will need to explore the new route that has been opened in front of her.

In our support group, yesterday, we pondered over this idea...Is it harder to know, to put a name on what afflicts your child, to have an idea of what the outcome will be like, or not? I guess knowing helps, in its own strange way. Zoé and I now belong to the community of people afflicted with a neuro-muscular disease.

Once you know for sure, what your child has, the loss of normalcy is what then comes into place. After that, you are faced with the mourning of that loss and what you need is time. To ponder, to reflect, to cry, to find the strength needed to keep going on, and ultimately, you will reach a place from which one never comes back, that of the sorority or fraternity of special parents of special kids. It's a different place and a nice one. I have met so many amazing people in this sorority, that if it hadn't been for Zoé I would have missed out on these beautiful moms and dads.

Again, having a child, period, means a new life, a new chapter, a new set of rules.

Then, you are told that this child, after 3 or 4 years is a new child with a set of symptoms, a new life, a new outcome.

Degenerative diseases are harsh, for you have no idea what life has in store for you.
You try to live day by day, you can't idealize the future. You were dealt one hand, and that's it, you play with the set of cards you were given, you have no choice.

It's the small victories that your child will achieve that will teach you what life is all about. We won't teach our children about life, for theirs will be a different one, they will be our instructors: so that we can learn patience, confidence, faith, strength. They won't need to teach us LOVE for that comes with the cards, no matter what. I love Zoé more than anything. I've often wondered what my life would be like if we didn't have MMD. Well, I can't imagine it and I guess, my only wish would be for Zoé not to have it. She would still be my very, unique, special child!

In fact, for those of you who don't know it, Zoé shed the light on our family tree, for without her, none of us would have known that we were or were not afflicted with Myotonic Dystrophy. I hear of so many stories about moms or dads, who one day, are told that their child has inherited their good looks and their genes, and a small abnormality on chromosome x y z. Life is amazing!


Yesterday, a new family came to visit PIP (Parent Infant Program) where Zoé goes twice a week. We were introduced to their daughter, Nova, a beautiful little 9 week old baby with Down Syndrome. They were thinking about whether they wanted a home-based early intervention program for their daughter or a center-based one. They were thrilled to see our group, how kids interact, what progress they can achieve. It was nice for them to be given a glimpse of what we live on a day to day basis and the journey they are about to embark upon. I wish them well. We look forward to seeing more of Nova really soon.

Till then, we send you our warmest thoughts on this sunny Friday afternoon...

Bubbles and Hats and all things nice...

What are little girls made of, what are little girls made of? Bubbles and hats and all things nice!

Had a wonderful time last night with two friends from the "sorority of special moms with special kids".

We had a good laugh and it's fun to help one another see through different lens, how we go about raising our children.

We mentioned how the landscape of our lives has been altered by what we have to deal with, on a day to day basis. The ups and downs of parenthood, and the added weight of having a child that needs a little more than the "neuro-typical" one, that little extra push up the slide, that extra attention, the extreme patience, that sometimes I lack, for at the end of the day, I am exhausted.

I think we need more of these nights where we cheer each other, for we all do a tremendous job, and it is important to cut ourselves some slack, because we do what we can to make the journey a fun one for all, despite the challenges and hurdles we are faced with everyday.

Thank you for sharing this trip to Holland, Suzy and Bahar, I'm so glad we can travel together!

I just dropped Zoé at day care and I need to organize my day, prioritize what is important to me, take full advantage of this day,to recharge my batteries, so that I can be an even better mom when I go pick her up, later today.

Zoé loves Road Trips and so does Mommy

 

Post Traumatic Stress Disorder

PTSD-- we talked about that at length in our past couple support group meetings, and how, like soldiers who fight in wars, we too suffer from post traumatic stress disorder. The only difference is that we never leave what causes our stress behind, it remains.Having a child with special needs adds stress to your life, but also beautiful new routes to explore.
I like to mention my own journey as a set of "graduations", or milestones, just like Zoé--who goes through hers. Like the milestones our little ones go through, we have our own.

When you do IVF and you manage to achieve a pregnancy, your doctor tells you, "That's it, you graduate" and I remember the fear I felt. It was so comforting, in a way, to be in the hands of the experts, and then it's the unknown that starts...the fear that something might go wrong, but ultimately, something that you have to go through, hoping that the precious little bundle of life you are carrying will continue to thrive and grow.

The second "graduation" was the time I would go to the hospital for I couldn't feel Zoé moving...and every time the reassuring feeling of hearing her little heartbeat running wild like a galloping horse.

Then, her birth, another initiation, she is taken away from us, sent down two stories to the NICU (Neo-natal Intensive Care Unit), and it's going home with an empty car seat that is the most heart wrenching part of it.
After that you get used to the daily trips to the NICU, day in, day out, in a cab, zooming through Central Park, to see your child in her little incubator, waiting for her to open her eyes, taking her in your arms. That too is reassuring, you know that she is in good hands, your own and the nurses' and doctors'.

Then came the day when she went from her isolette to a mini crib, under warm blankets. What a day! Milestone galore, we felt so happy. That meant that she could keep her body heat on her own.

Taking her home afterwards was another scary moment, fearing the first bath, the feedings, the first visit to the pediatrician, by minus 5, wondering whether it would be too cold for her.

And anxiety, nervous tension never stops, you stress about the assessments, the evaluations, the graduations Zoé has to go through. The milestones she might skip, because she has gross motor delay...

But all of that stress dissipates at times, and in a fleeting moment, or an entire day, you realize how grateful you are and how blessed you are to have the most precious child you could have imagined. I cannot picture my life without Zoé.

yesterday was one of those days, a huge milestone for both of us, Zoé changed classrooms at PIP and has a new teacher and new classmates now.

I am no longer with her in the room, but watching her behind the mirror with other anxious parents who want to make sure that their child will improve, will do well. She has her own little desk and follows the teacher's instructions carefully and attentively.
Matching fruits, objects like shoes. Putting finger puppets on her nose, on her toes, on her elbow and her neck. Hiding them up her sleeve, in her pocket. Making Pin art, tossing bean balls in a basket, way up high. That's where Zoé is now, way up high, with the sky being her only limit. I am so proud of her, she gets all the credit.

Till later, we send you all our love, big, warm hugs, and Zoé--our little yogi-- salutes you! (hope you like her downward dog, yoga move)

Advocacy for Dummies

Advocacy for Dummies or Advocacy 101, however you want to call it. I think I am failing...
It is so hard to keep fighting and to be upbeat when all doors seem to close in front of you. Today was one of those days, when Zoé's PT told me he wouldn't write a report to further support her case in front of a medical insurance denial.

I felt betrayed. It really did hurt, because after so many months of battling the system, it touched a very sore spot.

You think you can trust people, but at the end of the day, you are on your own, trail blazing the path...for some better future outcome.

Zoé is part of the equation, and when your child becomes a case that seems unable to be resolved, you don't think twice. You simply have to keep the fight.

It's just hard.

I am so happy to have this blog to vent my angers and frustrations.

I am so sorry.
Irina, a longtime friend sent me an email today to tell me what an inspiration this blog was, and I am trying to keep it that way, but the fight takes a lot out of you, trust me...

We got our 20-month questionnaire and evaluation last Friday, to validate Zoé's eligibility with the Regional Center, a bureaucratic machine that decides, according to 5 criteria, whether your child can be on board or not.

The day before they told me that "as of September 31st, Zoé will no longer be part of the system." What a blow! Well, the next day her file had been reviewed and we were told that Zoé had been moved from "high Risk" to "global delay", whatever that means...

Then, some of the questions blew my mind:
-Can Zoé stack 8 cubes to make a tower? Who does that, at 20 months???
-When you draw a straight line with Zoé, does she copy you? uh, yeah, but it's not that straight.
-When Zoé paints, does she paint over the border of the paper? Yeah, she paints on the floor, her chair, her hair and my pants!

Well I'll spare you the rest of the questions. Questions which make your child "qualify" or not, for what? I am not quite sure.Maybe it will stay in her file for her college applications!

Sorry for the ranting. Thank you for your support, dear blog readers.
I'll try to be more positive next time around. I have to keep smiling, for at the end of the day, Zoé brings joy to my life and paint to my laundry basket.

Caught Red-Handed

In possession of self-incriminating evidence: Zoé loves Ikea kiddie pasta!