This is the draft copy of the letter that the SB&H wanted me to write. I will also post the final copy after Helen at the SB&H edits it. Also want to thank those who helped edit it and make it so much more coherent than my original rambling text. Would love to hear what you think
On August 28, 2001 I received the ultrasound that changed my life. Before this ultrasound I loved being pregnant. I didn’t have morning sickness, my hair was curly and I was just having a grand old time. I went in for a routine non-stress test because Jake really wasn’t moving around a lot – not that he moved around a lot before, but they just wanted to make sure he was okay.
During the test, the technician started to make me nervous by asking all sorts of weird questions about folic acid and other alarming questions. After it was all over the technician came out to tell me that my child has a Myelomeningocele (Spina Bifida) and that my doctor would speak with me soon. I couldn’t believe it. After all, I had taken folic acid for at least 6 months before I became pregnant and all the information I had seen said that would prevent me from having a child with Spina Bifida.My husband and I were devastated and to make it all worse, my doctor was too busy to talk to me and would call me in the morning.
Rather than wait, we called my sister-in-law, Sheila, who, at the time, was a nurse in the Urology department at Sick Kids. She was incredible and I will never be able to thank her enough for how much she helped us. Sheila was able to get us into the High Risk Pregnancy Unit at Mount Sinai right away and explained to us all she knew about spina bifida. The doctors and nurses in the Special Pregnancy unit were amazing. They explained what the worse case scenario was for Jake and how they were going to help us with everything. They explained everything in plain English and made sure we understood it all.
Two weeks later on September 11, 2001 at Mount Sinai, Jacob Rayment was born. He had surgery at Sick Kids to remove the bump on his back at 8:00 am the next morning. Dr. Dirks, his neurosurgeon did an awesome job and to this day still tells us how proud he is of the work he did on Jake.He explained that Jake's diagnosis was a lot better than they originally thought. We spent a week at Sick Kids hospital and than they sent us home. That’s when the real fun started.
The first few days home were hell – as every new parent knows. We just had a few extra worries on top of no sleep and what the hell are we doing with this new creature. We were taught to catheterize him every 2 hours, chart his intake and his output and to also change his dressing. We also had many doctors’ appointments at Sick Kids and Bloorview Kids Rehab. All this and I was now free falling into postpartum depression. It was insane! Most of it is still a total blur. However, the ambulatory nurse at Bloorview, Jenny Cooke, gave us some information on an association called the Spina Bifida and Hydrocephalus Association of Ontario (SBH). They have made all the difference to us. The SBH were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff there, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life. Well, at least much as he can expect with us as his parents!
Since that day, SB&H have helped us understand Jake’s condition, what we might expect in the future and how we can help Jake become the very best he could be. They gave us a crash course in Spina Bifida, Hydrocephalus, Attention Deficit Hyperactivity Disorder (ADHD), and all of the complications that go along with these conditions.The SB&H Resource Centre has also provided for us, and for Jake's teachers, a guide that educates teachers about spina bifida and hydrocephalus and gives them strategies for teaching children who have the types of learning disabilities that come with these conditions.
The SB&H also supports Kids on the Block, a puppet troupe that performs in schools to educate students about accepting disabilities and differences. The Kids on the Block "spina bifida" puppet helped to educate Jakes teachers and schoolmates about his disability, in a fun way. The SB&H also carries a wide range of children’s books where kids with wheelchairs, crutches or braces are portrayed just like other kids. It is good for Jake to see spina bifida portrayed so honestly and so positively. You probably won’t find these books in most libraries but SB&H makes them available to its members.
Being a parent of a child with spina bifida comes with many challenges. With Jake, his particular form of spina bifida (Lumosacral Myelodysplastic Lesion) has been both a blessing and a curse. Many children with spina bifida have a visible disability, but with Jake, at first glance, you cannot see an "obvious" disability.
The hardest part for Jake and us is that he is 8 and “still” wears a diaper because he has no sensation in his bowels and bladder and does not know when he has to go. Again, if he was in a wheelchair or wore braces, no one would ask us about it and he would not be teased about wearing a diaper.
I worry every night that eventually someone will make him feel bad because of his disability. We all know that without understanding and education, people can be cruel. He has been so lucky so far that no one has treated him badly, but I can’t help but worry that one day it will happen and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. Even though he drives me wacky (If you’re a mom with a kid with ADHD – you know what I mean) I love him with all my heart!!!
I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that the SB&H will always be there for us. That gives us hope and there is nothing more important than that.
Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse. If you are interested in more about Jake and Spina Bifida check out: http://raymentspinabifida.blogspot.com/
For 33 years, SB&H has provided care, support, awareness and education through information for teachers and medical professionals, family support and peer-to-peer networking. They have a toll-free phone line and website that allows individuals across the province to seek support or information that they need, when they need it. The Association helps make the lives of people with spina bifida and hydrocephalus, and their families easier.
How can SB&H provide all of these programs and services? They do it with the help of donors like you. Please give as generously as you can.
We urge you to support SB&H with your gift of $35, $50, $75 or $100, or make a contribution through our Monthly Giving program.Your generosity will enable SB&H to give courage, strength and hope to other individuals and families dealing with the complex conditions of spina bifida and/or hydrocephalus.
Your support today could make all the difference in someone’s life.