Sunday, September 5, 2010

Reaching out.

(Charlie @ 13 months, Photo by Randal Kurt)

The past couple of days, after the articles came out, I've received some very touching emails. Some were from people who wanted to let me know that they had read the articles and were keeping Charlie in their thoughts, and some were from people sharing their experiences of SMA and loss and similar painful situations. As much as I wouldn't wish this disease or any other illness that plans on taking someone's child from them long before their time, on anybody else, it's very comforting to know we're not alone in this situation, and I think they feel the same way too.

I'm posting two emails from two different women (I asked them for permission first) that really stuck out to me and makes talking about Charlie and SMA publicly, no matter how painful sometimes, totally worth it. It's nice to have people to lean on who can understand what we're going through.

These are the stories of two incredibly strong women that I hope can make someone else reading this, in a similar situation, feel a little less alone as well.

Hi Cherie,

I came home from work today and the first thing my husband showed me was the Province. I saw you and Charlie on the front page and read "Brave Baby" and wondered what happened? Then I read further and realized that your daughter has the same thing my son had. My son Marcus was also born with SMA and was also a type 1 diagnosis. Marcus was born on May 29, 2006 and diagnosed when he was 4 months old that he had something called SMA...we had no idea what it was and how serious it was. In short, our dear boy didn't live very long even though they said he'd have 50% chance of surviving until he turned that what they still say? Marcus was 7 months 1 week old when he died. He died on Jan. 5th 2007.

When I first found out that Marcus was going to die, I told my husband that I didn't want anymore kids because I didn't want to take the chance of having another SMA baby. But after Marcus died, I realized that I had to give Tia a sibling. Marcus was my 2nd child and Tia was my first. She was only 2-1/2 years old when Marcus died.

It took 6 months before I felt ready to try again and the second month we tried, I was pregnant. But 6 months later I had a miscarriage. We waited a few months and then tried again. The second month I got pregnant again. I was happy but I was scared. My doctor suggested I do the CVS (I think that's what it was) at 11-1/2 weeks because I wanted to find out if this baby had SMA or not. We made the CVS appointment for Wednesday but I had to go get an ultrasound done on Tuesday before the procedure. So I go to he ultrasound place on my own (husband was working) thinking it would be a quick appointment. I start getting nervous because the technician is taking longer than normal. I thought "my the baby not growing? Am I going to have another miscarriage?" I couldn't wait any longer so I ask her "is everything ok?" She says "I'll be done in second." Finally she turns the monitor so I can see and starts moving the ultrasound gadget on my belly and says "here's one heart beat....and here's're having twins!" Oh my god...I just started crying. The technician got worried and asked if I was ok and I quickly told her that I had a son die when he was 7 months old so to now be told that I was having twins was a miracle. Unbelievable right? I was happy yet I was scared. What if one of them had SMA? I have a 1 in four chance of having another with it. What if both babies had SMA? What would I do? It was so scary. Since having the CVS procedure would increase the risk of miscarriage, we decided to wait until I was 15 weeks and had the amnio done. We then had to wait another 4 weeks to get the results Man, those were the longest 4 weeks...but we were given wonderful news that not only did neither of the babies had SMA, I was having one boy and one girl. I was thrilled. Not that the boy would replace Marcus but I was happy that I had another chance at raising a boy...this one without SMA. The twins were born on Feb. 19th, 2009. Jake was 6 lbs 13 oz and Katie was 6 lbs 11 oz...both very healthy and no SMA. Today they are 18 months old and healthy. Tia is now 6 years old and is a wonderful big sister. She only remembers Marcus through pictures but she'll never forget her little brother. We always tell Jake and Katie that they have a big brother too. We don't want none of our children to not know Marcus so we make every effort to talk about Marcus and remember him. He too was our little angel and we like to think that he gave us Jake and Katie.

Losing Marcus was very difficult but I stayed strong for Kent and Tia. People were amazed at how strong I was but when you're told that your child is dying and there's no cure, you just need to stay positive and enjoy every single day you have with your child. I just want to say, stay strong, enjoy every single day your have with little Charlie and stay realistic.

It was so hard when he died but after the first year it got easier. I think about him all the time but try not to talk about it with people cuz I start I am now. I miss him dearly but I know he's in a better place. If this didn't happen I would have Jake and Katie right? But I wish I didn't have to lose Marcus to get Jake and Katie.

Sorry I just rambled on and on about stuff, but I just wanted to send you an email to say that I understand what you and your husband are going through cuz I went through it already. I'll think about you guys and Charlie from this day forward. Take care and cherish every moment you have with her.



And here's the other letter...

Hi Cherie,

My mom came across your newspaper article today and passed it on to me. I have been at my daughters bedside in the NICU at BC Women's hospital since her birth over six months ago, Gemma was born with a neurological muscular disorder. They first believed her to have SMA type 1 but the results came back negative and she remains undiagnosed. As with you and your husband, it is a rare genetic disorder that we have passed down to her even though we have no known history of muscular disorders in our family.

Gemma does not have the regular path that most children with muscular disorders have, which is to be born somewhat 'normal' and then get weaker over time. Gemma was born extremely week and has gained quite a bit of strength over time but is ventilator dependant and has low muscle tone.

Your story is inspiring and helps make me feel like we aren't so alone in the world, especially when you wrote about how it feels like these children are 'trapped in their own bodies', that really hit me because that is how I have described Gemma to others. She lives mostly through her eyes, looking at everything and trying to use the strength she has to touch and grab at things.

We have been involved with the Canuck Place as well, they have come to the hospital to see Gemma and be involved in some of our meetings. They consider children with muscle disorders 'terminal' as you know because they are expected to have a shortened life and Canuck Place is involved as palliative care. I was so scared to have them involved at first, I thought they got involved just to try and convince us of 'ending care' by extubating Gemma but there is a lot more to Canuck Place than I thought.

We have decided to continue Gemma's care and let our daughter decide her path. She has come so far and we will do what it takes to help her as long as she is comfortable.

Even though I don't know you I feel like I know you already, I can really connect to your life and what it is like to be in this position. It is so devistating as a mother and first time parent but even with the heartache I am so happy, I love her more than I could ever describe and know that she is here, as Charlie, to teach us all something. They are the most innocent, beautiful souls that will have more meaning in their short lives than we could ever hope for in a lifetime.

Thank you for sharing your story and your blog. I started a blog recently that just has e-mail updates that I had sent family but it gives others a better idea of what Gemma has gone through and to see her pictures ( ) If you are on Facebook please feel free to add me.

I hope that we can be in touch, take care and hugs for that beautiful Charlie girl :)

xo Amanda

Thanks for sharing your stories ladies, means a lot to me. Much Love!