Monday, May 31, 2010

Endless Love.

(Charlie and mommy, 11 months)

I've been going out a lot lately, with and without Charlie (when without, she's home with Matt). Keeping busy and surrounded with friends is how I've always dealt with stress. I don't necessarily think it's wrong or that I'm running away from my problems but it's just something I've taken note of lately. I've recently formed more close relationships with people who I've had more casual, aquaintence type relationships with in the past (before Charlie was diagnosed with SMA). I don't really care what circumstances brought us closer together, I'm just grateful to be supported by such a great group of people.

Matt and I often talk about what our plans are after Charlie passes away (just writing that I feel guilty). We just want to have a plan so we're not caught off guard and wondering what the hell to do with ourselves. We're pretty sure we will either sublet or sell our place and take off to Hawaii or anywhere not here for at least 6 months. We half joke that we'll bury our feet in the sand and drink "Leaving Las Vegas style" to numb the pain and erase our memories...but, I think we're smarter and stronger than that, it's just a dirty thought we toss around.

I love Charlie SO much. Like SO much. SO, SO, much. And lately when I look at her and I say to myself, "Oh my god, I love you so effing much" which I say to myself, and out loud, at least 20 times a day, I immediately think after, "Is there any way I can disconnect just a little at a time from her so I can try to save my heart just a little?" So far the answer is, NO...a big fat NO! I crave her. When I sleep without her (which is rarely) I long for her... to smoosh her all up and draw her little bum towards my tummy all snug, I NEED that, it's the absolute best feeling in the world. Because she has very limited mobility and isn't a wiggle wart, she is the best baby to hold close and snuggle up with.

We're so used to Charlie's g-tube now , it's just like nothing out of the ordinary for us. A couple of weeks ago my friend Lindsay and her new baby girl June were here and when I helped Linds change her diaper I noticed I was being super cautious to avoid her 'g-tube area'. When I later mentioned this to Matt he said, "Hey, I did that too when I was holding Cohen! (our friend Lori's son)" And I've actually even tried to avoid my own g-tube once when changing my shirt too! I'm not even kidding! Seriously! It's just second nature now, we just subconsciously assume all babies have one. We try to just take things one day at a time now instead of fearing the changes, because I never would have thought we'd be comfortable feeding Charlie through a device that's inserted into her tummy, but we've shocked ourselves, and have realized we're capable of so much more than we think we are. I like watching Matt feed Charlie like it ain't no big thing. It's really beautiful to see.

Matt and I have been doing well with our 'Biggest Loser challenge' we've both lost some weight and are going to the gym regularly. It's nice to have created a healthy habit together. Since having Charlie, even before her diagnosis, my interests have changed. I have a strong desire to be healthy and to learn how to cook well (I'm actually getting pretty good!) and now, my newest desire is to learn how to sew...I just bought a machine last week. I would love to make Charlie some clothes that are easy to get on and off of her, because it's just getting more and more difficult to maneuver her to get shirts over her head and deal with buttons and tights etc., but I don't just want her hanging around in sleepers all day either, she's my little fashionista! Actually, I've/we've recently reconnected with Matt's last girlfriend Genevieve, (she reached out to us when she heard about Charlie) she's a great girl and has agreed to come over this Wednesday to give me sewing lessons, (she is a fashion designer and was on Project Runway) so I'll be learning from the best! Soon I'll be a chef/designer/fitness buff/super mom extraordinaire!


  1. Oh My God you ROCK!

  2. Sounds like you guys and Charlie are doing great! If you like we will be at Canuck Place from the 4-6 and if you would like to come and see how we deliver the NIV Protocol with all the therapies on Shira you are more than welcome!! We are also going to go to GI and the aquarium one of those days if you would like to meet.

  3. your little girl is just sooo beautiful.

  4. I found your blog via Lori and just wanted to say that you're truly inspirational. I can't even imagine what you and your family are going through, but your honesty is gut-wrenching and amazing. I wish you all the best and think of you and your beautiful family often. I make little dresses, and would love to send you one - I just don't know if they would work - they slip over the head. Please let me know, if you'd like one, I'd love to send one over. Charlie is absolutely gorgeous.

  5. what a beautiful little angel you have! thanks for sharing cherie.


  6. super sweet post as per usual. beautiful pic of the two of u. laughed at the avoiding one's own imagined g-tube while changing. stay strong. have fun sewing :)

  7. Sounds like Charlie is doing well! My little one was dx at 6 months too and she is now 5 yrs old! She is my inspiration and has totally changed my life as well.