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Monday, November 9, 2009

How do we cope?

Since Amelia was born, so many people have said things to me like "Amelia is so lucky to have such a strong mother," "You do so much for her," etc. and my response is always the same: "What choice do I have? Any parent would do the same. Whatever it takes!"

Last week an old friend 0f mine stopped by with her daughter and boyfriend. She and I have been in each others lives for over 15 years. Crazy! Lots of fun times and too many adventures to mention. We hung out at our little apartment for awhile and when 2pm rolled around, we all went downstairs to wait for Miss Amelia to come home on the bus. Amelia's OT was due at 2:30pm and our small apt. got even tinier. I thought my friend and her posse were going to take off when the OT came, but to my surprise, they stayed. They stayed for the whole session! During Amelia's therapy session, my friend started talking about her nephew, we'll call him David.

David has Cerebral Palsy too. He is 3 now and has aged out of Early Intervention. My friend is sad, angry, frustrated, etc. because her sister-in-law has not transitioned him to the next phase of schooling - CPSE, ages 3-5 years old. David is not receiving any therapy now. David's mother also has a 5 year old daughter who she has not placed in Kindergarten yet either. She doesn't want be apart from them...but isn't proactive in do anything to socially or physically help them either because she has a painful Thyroid problem and doesn't have the physical strength or energy. David is non-ambulatory. My friend told me that when David gets up in the morning, his mother puts him in a laundry basket padded with pillows and sets him in front of the TV to watch "The Wiggles". David's father, my friends' brother, is never home -- he disappears to play golf, play in his band or go to work. My friend is stuck in what to do. She and her Mother (David's grandmother) have tried over and over again to talk, yell, demand, etc. that these parents take action and DO SOMETHING! They are at a loss. Do you call CPS?

Incredibly, this family did do a huge fundraiser last year and raised enough money to take David to China for a stem cell transfusion-- which is so wonderful. They just got back and my friend stated that David feels very different to her -- stronger. Maybe this will be the motivation his parents need to get him into the right program and resume his services.

Onto a personal moment of bragging....my friend video taped some of the amazing things that Amelia was doing with her OT on Friday in hopes of showing it to her sister-in-law. During the session, Amelia decided it was time to throw down books out of her bookcase (which is across the room from where she was) so she belly crawled over the bookcase. When she got there I told her to "sit up to get the books" and did a countdown (she loves 3-2-1) and SHE DID IT!!! I was shocked that she actually listened to me and did something when I asked her to (it so rarely happens that anyone in my house listens to me;).

All this to say, I know so many mom's -- with typically developing kids and with kids with special needs and I have always taken for granted that we all respond the same when it comes to giving our kids everything they need to succeed. To be the best they can be. I can't fathom not doing that. How can you not rise up to the challenge and fight to give your child mobility and language -- in whatever form that is.

A perfect example of this is my friend, Jodi who lives in Italy and is the mom of two adorable and wonderful kids. Her son, Jordan is deaf and uses a cochlear implant (see the link to her blog below -- it's fantastic!). It has been a success for him. Jodi has worked tirelessly from her little town in Tuscany -- traveling to Rome, Pisa, etc. - fighting, talking, pleading, crying, etc. to doctors, administrators, mayors, presidents, etc (you get the point!) to implement a newborn hearing screening for babies, when they are born, before they leave the hospital to go home. She has had incredible success and many cities in Italy have fallen in line and are creating programs for mandatory hearing screenings. Thousands of families will be better off because of Jodi. WOW!

I have to say that somewhere in the middle is Nestor and I. We schlepp Amelia out to hippotherapy (equine assisted therapy) on saturdays...if it's not raining, too cold, if Amelia isn't sick or if the PT who runs it isn't away. We have done 98 dives of hyperbaric oxygen therapy, a few sessions of acupuncture and craniosacral therapies each and three months total of Therasuit/intensive suit therapy through our friends at Therapies 4 Kids. I have Amelia on 10 supplements daily (muscle, overall health, antioxidants and brain enhancers) along with a full regimen of daily respiratory and standing therapies. She goes to school 5 days a week from 8:30-2pm and comes home for more therapies. Amelia's teachers come 5x's/weekly and her PT (Physical Therapist), OT (Occupational Therapist) and SLP (Speech and Language Pathologist) all come 2x's/ weekly (the sessions are 60 minutes).

We know about stem cells in China (stem cell trials from a child's own banked cord blood is the only stem cell therapy happening at this time in this country for children with CP -- at Duke -- and we never banked Amelia's cord blood) and robotics (see a couple posts ago). We know there is aquatherapy and a billion other therapies we have yet to explore.

But today, my little girl got off the bus in the heart of the West Village, NYC -- in one of the greatest cities in the world. I took her to the park three blocks from our little apartment -- at two blocks away, Amelia starts to squeal in delight, knowing the direction of the stroller. Once in the park, I headed to the swings and parked our stroller. I sat myself down on an old fashioned swing, placed my sweet girl in my lap and away we went! I held her with one arm and the chain of the swing with my other. I pumped my legs and swung higher and higher. Amelia gets so excited! She straightens her legs and moves her head side to side in a "no-no-no" pattern (it's a way of self stimulation and something she does when she's deliriously happy or seriously unhappy). When we've gotten enough momentum, I straighten out my legs so she can stretch herself out and lounge. There is laughter, happiness and cooing -- from both of us! I feel so overwhelmingly grateful to be able to give her these moments of weightless joy and flight, I could stay on that stupid swing all day! My arms get sore and my back is breaking, but who cares!!!! What better therapy could be out there than this?

6 comments:

Anonymous said...

Beautifully written! I totally agree and yes you two make a perfect match both lucky to have each other:) I hate when people ask me how do I do it, or that there amazed.... its like ummmm what was option #2 to run screaming for the hills?!?
xoxo Laila

Jodi Cutler Del Dottore said...

The tone of this post was totally, extremely and completely kick-ass. Likin' IT! Obviously I turned red while reading this, but my absolute, favorite part was the swing. I will tell you this, Debbie. You have reached a plateau and a sort of calm about your experience with Amelia and you have without a doubt matured so much through the shit managed to reach that point, because you are a strong person.
You've reached the point where you can lift your head and look around to really see how other people are handling your same situation and you had better damn-well pat yourself on the back and go get a freakin' manicure or massage to keep yourself going...Because you are going full-force ahead for Amelia. And I guarantee you that not too many other mothers have ever lived such a simple moment as swinging on a swing with the intensity that you did- and THAT is what Amelia gives back to you.
You are my hero every single day.

Dani said...

Beautifully said! And your description of Amelia knowing the direction of the park and how she starts getting excited and how she straightens her legs out and does the no-no-no with her head, etc was like reading about Gracie...she does the exact same thing! And I know what you mean...I've had lots of people ask me how do you do it etc...but a lady said to me one time, I don't know how you do it...I just wouldn't be able to do it/deal with it, etc. Um, what?! Her comment stuck with me the most out of all that have said similar things to me...I think in her tone she was so serious...she just wouldn't do it...it was a bizarre conversation that I just had to walk away from it! You just do...that's the only option for us! Big hugs to you guys!!

bright steps forward said...

Debbie, I have chills reading this and I am so proud to have been a small part in Amelia's life.

You are such a good writer, you should seriously think about doing a book on being a mom of a child with CP!

We hope to see you in Cali!

bright steps forward said...

Debbie, I have chills reading this and I am so proud to have been a small part in Amelia's life.

You are such a good writer, you should seriously think about doing a book on being a mom of a child with CP!

We hope to see you in Cali!

Anonymous said...

Deb--that was beautiful, and really emotional. We've been to the park together, but it's always too crowded for you to take Amelia on the swing. I'd love to see you two in action. You are doing great things for your girl and we know she is progressing because of it. By the way we arrived here safely in ABQ.
XOX--Mom