Monday, April 12, 2010


(Charlie and mommy 9 1/2 months)

 has finally begun...I am officially the woman who has one too many glasses of wine and cries. It's happened 3 times in the past couple of months. I don't want to be that woman. I was doing really well at avoiding being that woman. I've always thought that if you drink alcohol and end up crying, you need professional help instead of alcohol. I have always asked myself before every glass of wine "Are you drinking this because you want to enjoy a glass of wine with friends or are drinking this because you want to erase your day or numb something?" And, if the answer is the latter, then I know it's not a good idea to drink that glass of wine. But lately, I'm the woman who thinks I'm just partaking in a little Friday night glass of vino with friends but ends up being the sad bring down by the end of the's uncomfortable for people, and in my head, so embarrassing, and so not cool. So yeah, I gotta work on that...more professional help, less wine, and hopefully, understanding friends.

I've been having nightmares lately. I had one right before we went to Hawaii where I was sitting at a table with all my friends and family and it looked like the scene for The Last Supper, and Charlie was naked on the table and i was cutting her legs open to serve her at dinner and asking Matt to help me carve...very creepy, I know...I woke up terrified and told Matt, he looked at me horrified, I felt dirty and ashamed of myself that my mind was even capable of going there. When I woke up and thought about it I think I just felt guilty about possibly putting Charlie in danger to go to Hawaii, I felt selfish and like I was 'sacrificing' her...anyway, that's what I took from it. I had to take my first Ativan in a year and a half on Saturday night/Sunday morning (I used to get bad panic attacks). I shot up in bed panicking from a nightmare I'd been having...Charlie's legs were working in this one....she was running away from me...I was chasing was a very dangerous environment, the edge of a cliff on one side, sharp side up nails and tools on the other...basically no place for a child to be running free, but I couldn't catch her...I jolted awake, trembling, and yelled for Matt (he'd passed out in the living room) he came running in confused, asked me what was going on, and tried to calm me down. I was FREAKING out, crying and my tongue started feeling like it was twitching and swelling, I started to panic...I asked Matt if he'd mind if I took an Ativan and slept on the couch, I needed a break and a good sleep, I did, and I woke up a little more sane. The lack of sleep and stress is finally catching up with me and it's taking it's toll.

I'm beginning to recognize in myself that I have great difficulty displaying my vulnerability (except on this blog for some reason, I think that's why i enjoy it so much). I'm afraid and embarrassed to really ask for support and help. I'm afraid no one will want to spend time with me if i don't pretend to have everything under control. I don't know how to tell someone what's going on with Charlie without finishing it up with a "But, you know what, it's OK, she's a great girl, and we're going to just focus on the positive and enjoy her while she's here." Because, for some reason I feel like if I wrap the outside of something so ugly up with some pretty paper, then maybe you'll stay in the room beside it a little longer, rather than running as fast as you can in the other direction.

I was telling my friends Lindsay and Susan recently that one of the main reasons I even do this blog is because I feel like if you join us on this journey as we go along, then I think Charlie will no doubt get under your skin and you won't be able to help but love her, and then maybe she wont just be the terminally ill handicapped kid you've heard about, and maybe I won't just be the sick kids mother and Matt won't just be her father... maybe people will be able to connect with us on a deeper level? Because I've heard of the parents with 'a handicapped kid' but I've never been 'connected' with them. I just feel like if I get it all out here, then maybe you'll get to know us better and maybe we can still be 'cool' or 'normal', you know?

Because I managed to get two days in a row of good sleep, I woke up today ready to make a hundred phone calls and REALLY get proactive in Charlie's treatment and care. She needs to get a special reclining car seat made for her, she needs to have a special diet set up for when we decide to feed her full-time through her g-tube, and I've talked to physio and occupational therapists to set up appointments regarding exercises and special apparatus' she'll need in the near future such as a 'cough assist' which we'll use to help her cough when she's struggling to do so on her own. So, all and all, a pretty productive day so far. And, luckily, it's GORGEOUS out, so I'm gonna get Charlie ready and take her for her daily stroll. (SEE...I seriously cannot help but end things on a positive note.) But really, it is gorgeous out. ;)


  1. You'll always be the coolest person I know. xo

  2. You have to give yourself a break and give yourself permission to grieve. We live in such a chin up society its enough to make you gag. You know what the reality as you are living with it. Yes there are a lot of positives like Charlie is smart and capable and you are going to deliver a great quality of life to her. There are so many kids right in Vancouver that get abused and have less than what Charlie has and is going to have because of who you and Matt are!

    Now is the time when we find out who are friends really are. This is one of the toughest things to go through and most people can't handle much so don't be surprised if a lot of your so called friends bail out on you. You hit the nail on the head when you said "I need to accept help" and yes you do. Take help where ever it is given if it is worthwhile. You guys are doing great, just love and support each other and give each other a break.

    I have always said to Maxine that the next hardest thing about watching Shira go through this has been dealing with people, it taxes me beyond! I am learning to have compassion for the indifferent but it is difficult. Focus on yourselves and let friends and family rally around you and accept everything. It takes a village to raise a child and it takes more than that to raise an SMA child!

    As far as cough assist goes it does more than just help in case of emergencies it is the number one therapy for improving lung function and that added with Chest Physio therapy is what keeps our children alive!

    Pat yourselves on the back, hug each other, lot's of group hugs with Charlie and lots of high 5's for doing this together!!! Positive thoughts and healing energy headed your way.

    Give the girl a hug from us!

  3. You say “I'm afraid no one will want to spend time with me…”I sometimes worry that you might think I want to spend time with you BECAUSE of your current situation. I suppose that is somewhat true because you need a lot of love and support right now and because time with Charlie is limited and I’ve been head over heels for that sweet little girl from the first time I saw her photo. But, as I’ve told you, I’ve always really liked you and enjoyed growing closer since we were both pregnant. Your emails always made/make me smile, if not laugh out loud and you definitely have one of the most contagious laughs I’ve ever heard! :)

    I know I’m not the first person to tell you how smitten I am with Charlie. It has nothing to do with her diagnosis…there’s just something about her. I used to make Raj come and look at pictures of her on facebook - I never do that with other babies. We used to think that her and Priya looked alike – when they were both newborns. I think I remember you calling her a “pale version of Priya”! Hah!

    Your situation is just unimaginable…there is not a day that goes by that I don’t think of you guys. I’ve cried my heart out more times than I can count. I sometimes wonder, if I’m feeling this badly, how do Cherie and Matt get through the day? I really am amazed by your strength and positivity.

    We’ve had so much fun every time we get together but if you wanted to cry on my shoulder for 2 straight hours, I would still be waiting for our next get-together! I can sort of understand where you are coming from…although our situations are completely incomparable…after losing my parents last year, I find that I put on a brave face to anyone who talks to me about it. I worry about ‘burdening’ people with my sadness.

    I’m sure I speak on behalf of all your friends and family when I say how hard it is feeling as if there is nothing we can do. I’m constantly racking my brain about how I could help out or what I could I send you that you might need. I know you are grateful for all the gifts, support and kind words you’ve received, but please know that we are also so very grateful that you’ve let us be a part of Charlie’s life and yours.

    Thanks Cherie. xoxo

  4. I am going to be completely honest and tell you that I too have fears surrounding Charlie's diagnosis and where that puts our friendship. Like Sue, I worry that you are going to think I want to be around Charlie more because of her diagnosis. Given that some of my best pals have special needs, not to mention my occupation etc, I worry that it is going to seem like I am treating you guys as clients or something. This couldn't be further from the truth however.
    The reality is that you are a great Mom, and Charlie is a great kid. We went through our pregnancies together, and having babies, and I want to continue on this journey with you no matter what. The least that any of us can do is to listen. There isn't a day that goes by that I don't wish there were something more I could do. I think everyone feels that way. Like somehow if there were just something to ease the hurt for just even five minutes...
    And then there is the guilt that I feel for crying about this. I get so upset because life isn't supposed to be happening like this. Everything was going to be Charlie and Dani and sleepovers and pillow fights and then I get so mad at myself for even feeling sad because it is your situation, not mine. I need to feel strong for you and Matt and Charlie, but that little redhead stole my heart the first time I saw her, and I hurt, and I get pissed off and then I look at my own daughter and feel guilty. I feel guilty for aching like this when I have my own kid, so how can I be hurting like this, and for crying because how could I even begin to know how you feel. We are all mixed up in this and love and care about you guys more than words can express.

  5. Whoa ladies! You know how you can be having one of those days/weeks and a good friend of yours just know how to say the right thing at the right time causing the black clouds to part? You two just did that. Thanks! I'm glad i have you. You're lovely.

    And thanks to you to Brad, for all your understanding and all your help!