Sunday, December 21, 2008

Ups and Downs

It's been a pretty emotional week for me. I had planned to update a few days ago after Joey's nursery school party, but it didn't go quite as planned so it was tough to come here and write about it.

As I had mentioned before, I was so excited to attend Joey's nursery school party on Thursday, as I never get to see him there with the other kids because Gramma Phyllis takes him every week. I was the first parent to arrive, grabbed a seat front and centre with my camera ready to take some video because the kids were doing a little presentation, singing 2 Christmas songs. There was a curtain dividing the room, and as soon as they drew it back and the kids started singing I did NOT have the reaction I anticipated. There were all of these adorable 2.5 - 5 year olds, a bit chaotic as they were singing but adorable nonetheless. Then there's my Joey, in Gramma Phyllis' arms, not singing, not even standing, and Gramma is singing for him. My heart broke in two, I'm sure of it. I froze, shocked that I was not reacting the way I thought I would. I wanted the floor to swallow me up and I felt horrible for thinking that. For the first time, there was my beautiful baby boy, among a group of his peers who are "typical" and it became painfully obvious that my child is extremely disabled. Somehow I managed to make it through with a smile plastered on my face, I even made it through the little social with Santa that followed, but once I helped Gramma and Papa Roy get Joey packed in their truck (I was supposed to go grocery shopping that afternoon) and I got in my car I started bawling, and just couldn't stop. I skipped the grocery store and headed straight home.

Something inside me definitely changed that day. The denial I've been living with the past 2 years is now gone and I am right in the thick of full-on grief. Great timing, huh? I've always loved Christmas, and I still do, but this one is already pretty emotional for me. But where there is a "down", it always seems to be followed by an "up"....

Joey started working with his PT assistant "P" in October. he instantly formed a bond with her, and now it's obvious to me that she has formed a bond with his as well. I could tell you the story of the amazing things she has done for us in the past few weeks, but instead I will paste below the letter I sent to her boss, which sums it up pretty nicely:

Dear Paul,

My name is Pamela and I have a 2 ½ year-old son named Joey. He was born with hypotonia, and since his birth we have also discovered that he is globally developmentally delayed. Since then he has been assigned the diagnostic label of hypotonic cerebral palsy. We have been involved in all sorts of therapy through various organizations, first through the neonatal Follow Up Clinic, and now we receive services from CCAC, CTN and SCS. Throughout this journey we have faced countless obstacles, and both my husband and I have had to become aggressive advocates for our son in order to obtain the programs and services that he needs, programs and services that quite obviously suffer from a lack of staff and resources. I am always the first person to speak up or express my dissatisfaction when we are not getting something we need but I try to balance that with recognizing when we receive outstanding service, which is why I am writing to you today.

J has been Joey's physiotherapist since December of 2006, when Joey was only 9 months old. From the very first time we met with her I have been completely impressed by her professionalism, knowledge and commitment to Joey's care. In fact, with all of the therapy Joey receives, including OT, SLP, nutritional support etc. I am happy to tell you that PT has been the most consistent, and that is due entirely to J. Recently Joey had a Bayley Assessment done, and the one area that he excelled at above all others was his gross motor skills, and I am positive that it is because of J's work with him over the past 2 years. She has always known when Joey only required maybe one or two visits a month, and also recognized based on his development when he needed more intensive blocks of therapy and made sure that it happened. In addition to the PT she provides she has been such a great support to me personally, offering advice and resources when asked, and sometimes just providing an ear to allow me to vent about some of the difficulties we have faced. All of these things combined make her an excellent therapist and an asset to your team.

Recently J identified Joey as a child who would benefit from the additional support of your newly added PT assistant, P. Joey began working with P on a weekly basis in October of this year. Just when I thought our service was as great as possible, I now find myself extremely grateful for Patricia's work with Joey. Joey formed an instant bond with Patricia, he behaves towards her as he only does with close family members, and P's response to this has been to treat Joey the same way. He has excelled under her care, gaining more skills in a 3-month period than I thought possible. Her wealth of experience has benefitted Joey so much, and we were so pleased to learn that Joey will continue to work with her in the New Year. P has gone above and beyond her job. Joey really enjoys a particular toy we use during his sessions, a simple set of colourful elastics with bells attached, and when I mentioned to P that I was having difficulty finding the elastic to recreate the toys she took it upon herself to buy white elastic, dye it herself with food colouring and sew the bells and Velcro on, giving a set to Joey as a Christmas gift. There is also a piece of equipment that we use for his sessions, the "ladder", that we have actually looked into building or purchasing ourselves, but it costs about $450, and given that we work full time and are raising a child with extraordinary needs finding the time to build something similar was very difficult. Tonight I received a call from P telling me that her husband has built a replica of this ladder for Joey to use as long as he likes. I don't think it's possible for me to express in words how amazing this was for her to do; I'm not sure how we could ever thank her.

I know it's very easy to simply say "thank you" to J and P, but I wanted to do more, so I have written you this letter hoping they will be recognized for their dedication and obvious passion for the job that they do. I also wanted you, as their supervisor, to be aware of the wonderful things your team does in the community.



Most people, when they have a child, see only a few people added to their life because of it. Maybe a pediatrician, or some new Mommy friends at a playgroup. At last count I would say we have met about 30 new people because of Joey's disabilities, and some of these people truly are angels on earth. Can you imagine our amazing "P", who has know Joey for all of 3 months, having her husband BUILD this piece of equipment for Joey??!! And wait till you see it (it's still at Gramma and Papa's house right now, but I will post pictures later). The one he uses at therapy is nice, but the one Patricia's husband built is even BETTER! When she told me about it I thought perhaps he slapped something together with scraps, which would have been fantastic in and of itself. but no, this thing is of the highest quality, and I know Joey will get so much use out of it.

Having a disabled child also changes the people around you, and your relationship with them. No one, not even she herself, thought that Gramma Phyllis would become the HUGE part of Joey's life that she is today. I wish you could have seen her up there with Joey during that Christmas presentation at the nursery school...instead of simply enjoying her retirement in Florida, which is where she and Papa Roy would be at this time of year if it wasn't for Joey, she was up there supporting Joey, and by doing so supporting both Jason and myself. And then there's Papa Roy, who has no biological connection to Joey whatsoever, and you would never know it. On Friday we had several appointments with Joey all over the city in the midst of a bad snowstorm. Papa Roy provided me with my own personal escort, following my car around in his truck from place to place, waiting patiently for Joey's appointments to end, just to make sure we got everywhere safely. I'm quite sure he could have done lots of other things for that 6 hours, but he lovingly wanted to make sure we got where we needed to safely.

~sigh~ So we are very lucky in so many ways, and I know this. And the luckiest thing is that we have this gorgeous, happy, sweet, loving boy who has had an amazing impact on everyone he meets.

- P, J & J

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