Tuesday, November 24, 2009

Happy Thanksgiving

This week is flying by and before we know it we'll be packing luggage, loading up cars and shlepping to friends/family/loved ones to eat/drink/ get the picture. I have begun the preparations for leaving for a long weekend. A trip to the pharmacy to load up on Amelia's medications, two trips to Loehmann's (I had to buy birthday gifts...and I just happened to find some cute things for me!) and tomorrow -- build an ice cream cake, laundry and PACK!

Thursday we will trek to my niece & boyfriend's new house in Jersey City as they host their first big Thanksgiving dinner and then take off afterwards for Baltimore to visit my family. Really looking forward to it. My sister had surgery on her thyroid last week so it will be good to see her. Also, my 20th high school reunion is on Saturday and I have been looking forward to it...still am...but...

On Monday morning Dyana Eckstein, a friend from high school, lost her battle with cancer. She was 39. Dyana wasn't a close friend of mine. We hadn't spoken in years. We were Facebook friends and I had wished her a happy birthday not even a week ago....but she was a dear friend of several of my dear friends. We went to the same parties in school, then to the same bridal and baby showers and bachelorette parties. We were always around each other in our circle and I liked her. I knew she had been sick on and off for the past several years through our mutual friends, but I thought she was in remission. I didn't realize things had gotten so bad that she was in her last efforts to find relief through clinical trials at NIH. One of our mutual best friends, Bethe, had been in daily contact with her. When I saw a post on Facebook, "RIP Dyana" yesterday I flew to the phone to call her. She told me it was her. I am so sad. Whether or not she and I were close, she was a part of my past -- we were girls together. For the girl she was and the woman she became....for the battle she waged and lost...I am sorry for her and for her family and friends...most of them my good friends. I know she touched so many people's lives and will be missed sorely. I also know she was in pain. She told Bethe that she knew her life wasn't about longevity -- she just wanted to make it to 4o.

So this Thursday, when families across the country sit down together, to give thanks and look across the table at each other -- stop and really take it in. We are in a crappy economy. Unemployment is up. We're in a seemingly endless war -- but we have so much.

For those who are by my side or sharing the holiday someplace else this year -- or who are no longer here with us...I want to send you my love. Thank you for all you have given me. I hope to live in the moment during this holiday season -- snapshots to carry with me, to remind me of all I have.

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 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?