Summer Time Fun

I don’t know where to start as we have been having so much fun. Sammy has been in many different camps this summer. Besides the camp he has been going to since he was 4 years old the Victoria Conservatory Musical theatre camp was a big highlight for Sammy and for Shira. As many of you well know I am a huge advocate for staying away from social gatherings of any kind with Shira. Whenever you are around more than your own family your chance of infecting Shira with something goes up exponentially. Being summer and knowing how slow our local pediatric intensive care unit is we decided to take Shira to Sammy’s recital. Sammy had been practicing the songs from Annie for many days so of course Shira also learned them. Where ever we go Sammy and Shira sing It’s A Hard Knock Life and The Sun Will Come Out in unison. It’s the cutest thing you’ve ever heard and seen. I was walking down the street the other evening with Sammy and Shira in her stroller. The streets were very quite and you could here their voices ringing out singing It’s A Hard Knock Life. Shira in her stander certainly makes those words ring a little true except for the fact we don’t torture her at home like Ms. Hanagon. Anyways Shira was blown away by the beautiful stage and of course the recital. Shira screamed when the young girl playing Ms. Hanagon appeared on stage. It was an amazing production and Sammy was the only boy to get a part out of the chorus. Sammy played the policeman chasing down Annie and he did a great job!

Yesterday we took Shira to her first movie and it was an IMAX movie no less. The movie opened up with a 6 story Orca Whale jumping at us. The movie was about whales and it was absolutely beautiful of course. Most of the scenes were from South America and it just made me want to get on a plane. Shira absolutely loved it and she kept singing Aerial’s little theme song from The Little Mermaid all the way through the movie. When the movie finished Shira said, “Yeah!” After the show we walked through the whole B.C. museum which she also enjoyed.

On Thursday I took Shira to Sammy’s outdoor camp but I have to say it was not all that exciting and I signed Sammy out and Shira, Sammy and I took off together. We made a trip to Shira’s school www.sides.ca to see if anyone would be there. Shira will be attending Kindergarten this year at home but the school will be sending a teacher to our home. I of course took Shira and Sammy to the wrong campus and I guess they called where we were supposed to go because when we got there they were all waiting for us. Shira kept saying, “I’m so excited, I’m so excited!” The whole staff was so welcoming and loving towards Shira it was a beautiful thing. It was really like someone was on our side, really understood Shira and could see how much potential she has. While we were at the school Sammy felt the need to push Shira in her wheel chair. Sammy is so proud to know his sister is going to school. The staff really treated Sammy well and really understand the dynamics between siblings and the role they play in the family unit with a child with challenges. We had the greatest time and it was very energizing to be there.

Today we are off to the Johnson Street Market then maybe a visit with the goats at Beacon Hill Farm.

Spinal Muscular Atrophy~ Our Day At India Day

Here is a video of us at India Day Victoria, B.C. It was too hot but the kids had fun! http://www.youtube.com/watch?v=j0sBpvn8LNQ

Shira Watches Mommy Perform At Hillside Mall

Shira is now 5 years old and believe it or not she has only seen her mom perform in public 2 times. The reason for this is we keep Shira away from social gatherings. 90% of children with SMA Type 1 are dead by the age of 2. These statistics are based on no intervention and high levels of exposure to other people which lead to death through disease. Shira has had relatively few hospitalizations because of our disease protocol (can be viewed here http://www.asonginthisworld.com/images/client_pics/DISEASE%20PREVENTION%20FOR%20OUR%20HOME.pdf

But being summer and cold and flu season slower this time of year (but not totally gone you still need to be vigilant)we took Shira to the mall to watch Maxine perform her children's show Let's Make Music And Move. Here is the video: http://www.youtube.com/watch?v=pXkxtvJdke8 Shira absolutely loves watching her mom up there and all the children reacting to her. Shira also loves singing and performing herself and really wants to get up on stage and sing which we might do next time.

As you can see Shira has a little glass bead neckless with a lion bead on it. We were at a Pow Wow last 2 weeks ago and Shira chose the beads and the whole family pitched in and helped her make it. Sammy also made a wonderful bone bead neckless with beads he bought there.

Shira is really doing great and has so many interests like regular kids. She just needs more support when doing things. Today we are off to an Indian Festival downtown. Shira and Sammy are both excited to dress up in their authentic Indian clothing from India and going to the festival. d

Tonight Shira said, "I have SMA. I want to be grown up!"

I'm not sure but I think Shira is thinking when she is grown up she will be able to walk and be like everyone else. Now i'm thinking how do I deal with these questions. I've just started searching for answers to these questions and found this article on www.fsma.org web site:

How do I explain SMA to my young child?



Dear Parent,
You asked how to tell your son about his SMA without damaging his soul. I am 26 years old and have SMA. As I recall, my parents were a lot sadder about my disability than I ever was as a child. Under no circumstances did I want my parents to be sad about me, and I still don't. Your son probably does not want you to be sad about him either.

As far as what to tell him, I think it is generally best to answer his questions as he asks them, not before. At his age, I remember I wanted to know what the reason was that I could not walk, and by that I mean I wanted to know what the malfunction of my body was, but everybody usually gave a sermon every time I asked. It took a long time for me to get the answer I was looking for, that my nerves (which were like phone lines) were not able to get enough messages from my brain to my muscles, and so all of my muscles were very weak because they didn't get my brain's messages enough. So listen carefully to what your son asks and don't make his questions bigger than they really are. You say you are worried how to tell him that he won't walk again. It is possible that he doesn't believe he will walk again and just wants to know whether or not he will. I would tell him that he will probably not walk again, and then ask him how that makes him feel. Talking to him about how he feels, however he feels, is more important than trying not be optimistic in telling him the news. Your son will react how he will react. All you can do is be there to support him through his reaction.

He probably will ask you himself whether or not his illness is life threatening. If he ever watches the MDA telethon, gets hospitalized with a bad pneumonia, or meets others with neuro-muscular disease, trust me, he will one day ask you if he is going to die young. You must tell him the truth, which is that some people with SMA die young and others do not. Whether or not he dies young is up to how healthy he tries to be and up to whatever God has in mind for him. Tell him this is true for all people, not just people with SMA. Tell him that his job on earth is to live as fully as he can, not to wait around for death. And then ask how he feels. If he feels scared or sad, let him know how you feel when you think about dying young. It's a difficult idea for everyone, after all.

I would recommend you introduce your son to Stephen Hawkings' movie, A Brief History of Time (not the book - it's incomprehensible) when he's a little older. Stephen Hawkings has ALS, a neuromuscular disease that it almost always fatal. Stephen has lived more than 20 years longer than predicted, and his doctors are forever saying that he only has a little more time left. He is married, has kids and has made a huge contribution to the world through his work. He's a good role model for children who are worried about the life implications of ALS, not because he has survived, but because he lives the life he has.

Sincerely,
Jennifer Rellick

Soul and Giving

On Wed morning Shira, myself and our care worker went to a mall to watch Maxine perform for children. Maxine is a music therapist with a masters degree in psychology but she also has a show created specificly for toddlers. It's not easy to keep a toddlers attention for 45 straight minutes but Maxine is a master at it and really understands what children need. Shira has only seen Maxine perform 2 times because we have been so afraid to expose her to germs in social environments. Shira of course loved the concert and watching mommy and all the children responding to mommy. After the concert the mall gives out balloons to children. Shira was given 2 balloons and when we walked away I heard a little girl start to cry hysterically because she didn't get a balloon. I told Shira a little girl was very sad because she didn't get a balloon and would she like to give one of hers to the little girl. Shira being Shira said, "that's not good daddy! We can give her a balloon!" We walked over to the girl and her mother and I said my daughter would like to give her little girl one of her balloons. The mother looking over at Shira laying in her stroller drooling with her oxymeter and food line going under her shirt, her orthotics and wrist brace said, "no it's ok you don't have to she'll be alright" probably thinking what is this I couldn't take a balloon from this girl. Shira in her very low volume voice was saying, "don't cry have a balloon!" I held Shira's hand in mine because she can't raise her own arms and moved her arm in the direction of the little girl with the pink balloon in her hand. Shira gave the little girl the balloon and the little girl started to settle down but was still hyperventilating. I almost lost it (cried) when Shira did this. Shira is my song in this world, my mitzvah girl (good deed).

Below is an explanation about soul by a chassidic master Rebbe Nachman. I found it interesting.

The differences between the body and the soul are vast. Yet their combination is what makes "man." They can work together in perfect harmony.
Rebbe Nachman taught:
A person must care for his body, so that it shines with each spiritual advancement he achieves. for the soul perceives and understands extremely lofty levels, while the body remains ignorant of them. A person must therefore purify his body, to enable it to share in the soul's perceptions. The soul will also benefit from a body which is finely attuned to spirituality, for fi the soul falls from its spiritual level, the body which has experienced Godliness will enable it to regain its previous level of holiness.

This can occur because the body has attained a corresponding level of purity.
For a person to attain this level of harmony and cooperation between body and soul, he must break the brazenness of the body's lusts and desires by countering it with "holy brazenness, " the stubborn will to bring himself to spirituality, come what may. In doing so, he allows his soul to blend completely with his body.

The means through which the body blends with the soul is the performance of the mitzvot (charity or good deed). The more good deeds a person performs, the greater his body's subjugation to his soul, allowing the body to actually feel the soul's attainments. (Likuty Moharan I, 22:5, 8) from Anatomy of The Soul Rebbe Nachman Of Breslov