Friday, April 8, 2011


(Warning: Lately, most of my blog posts have been very happy and positive because let's face it, life is good. Very good. But something happened this week that caused some tears and some reflection and I started feeling pretty sorry for myself. So in an effort to be honest and share the highs AND lows of my life, I decided to share it with you.) I follow A LOT of blogs. Mostly blogs by moms of kids with CP...but I also follow a lot of blogs by moms of kids with other types of special needs. Even though the medical jargon may be different, the roller coaster of emotions that we're on is the same. I enjoy reading about Maya at Uncommon Sense. I started following this blog when I came across her very popular post called "Amsterdam International". If you haven't read this post, then you MUST DO IT RIGHT NOW. Anyways...this week Maya's mom posted some old videos of Maya as a baby. Video #2 is precious...featuring Maya's first laugh. Instead of laughing and smiling along with Maya and her parents, the tears started to flow. I don't remember the boys at that age. At all. I do have a few photos. But no videos. And I certainly don't remember at any point enjoying Ben and Daniel in that way. Doesn't that sound horrible? But it's true. I routinely describe the first year of their life as the worst year of my life. Dealing with Ben's CP diagnosis has been a walk in the park in comparison to that first year. So...I feel gypped. Totally gypped. I didn't get to give birth to ONE full-term baby. Instead, I had two babies that were born 10 weeks too early. I didn't get to take that one baby (or even two babies) home from the hospital with me. I had to leave them behind. I had to wait 57 days and nights before I got to bring them home. And when they came home, they were still on wires. I had to cut holes in any sleepers that had zippers instead of snaps for their wires to come through. I remember the first time that I successfully breastfed Daniel. Instead of feeling happy about it, I had tears streaming down my face as all I could hear was Ben screaming as they put an IV into his head. But most of all, I didn't get to enjoy my babies. Ben had colic. Daniel had SEVERE reflux. We were alone with no friends or family nearby. They came home in November with the warning to keep them at home and only take them out for doctors appointments. So we stayed home for 6 months. I didn't even dress them up in cute outfits. I was too tired. It was too much work. I just left them in whatever they were wearing (a sleeper) until it got dirty and then they got changed. I remember saying thank you to my husband for coming home from work every night. Home to an exhausted (and likely depressed) wife and at least one (Ben), if not two, screaming children. If someone had let me out to go to work, I'm not sure I would have come back. So yeah. That first year sucked. And I didn't even realize how much until I saw that video of Maya. Of her laughter. And of her parents truly enjoying her. And I wished that I'd had that.


  1. Blogger drives me CRAZY! This post is not supposed to be ALL in one paragraph! I keep editing the post and fixing the spacing but it keeps on going. It kinda ruins the post. Ah well...

  2. I've been thinking about this a lot lately, especially because I now have something to compare that experience to...

    I've been working on a post in my head along these lines. Our experience with the boys was trying. Everything was to the extremes, and while I knew that other people experienced nothing like what we went through, now that I see what a typical birth and take home baby are like I am blown away by just how gypped we were. It makes me sad actually, and I think I am grieving the "loss" all over again if that makes sense. And it still hurts.

    Hugs to you. I get it. I really do.

  3. Thanks Stacie for your comment. I was just re-reading my post and re-considering it...thinking about taking it down. I guess I was feeling a little too exposed...a little to vulnerable...and a bit like a whiner. And then I saw your comment. And I've decided to leave it up...maybe someone else will connect with it too.

    I'm so pleased that you're getting to experience to other side this time. Please share your experience with a full-term baby with all of us, so I can live vicariously through you.

  4. I'm here with you too, Caryanne. Our experiences were very similar. Our boys were in the NICU for over three months. We lost too much time and then when they came home, well it was constant waking them up for medicine, checking oxygen level, a million appts, and not at all what I had hoped/dreamed as life of a new mom. I know some have it far worse than we have had and I am always grateful that my boys are doing as well as they are given an incredibly hard start but it was incredibly hard all the same. thank you for being so honest.

  5. Hi Cary! I have stopped by your blog many of times from M&M, but this is my first time to comment. Your boys are adorable! You are an amazing writer (& Mom) and I enjoy reading your posts. I had my B/G twins at 28 weeks, so I can relate to this post! Thanks for sharing your feeling! Take care, Andrea

  6. Hi Cary,

    Thanks for sharing Amsterdam International :)

    I'm sorry about your feeling gypped-ness. I think everyone with children with SN can sympathize with that---we all have things that we mourn, deviations from what we envisioned we would get to do/experience as parents. It's definitely a bummer.

    That video is bittersweet for me, too. It was taken before we knew that Maya had special needs . . . I suspected that she would need oral motor therapy at that point, but that was it. I watch it and think "Oh, younger-version-of-me, you just have no idea what's coming". Like watching a character in a horror movie go into the dark house when you totally know they should not go into the dark house . . . you feel bad because they are sweet and unsuspecting and you're about to watch them get clobbered.

    Your boys are adorable, by the way :)

  7. You know, I've often posted about this. I think we all need these moments to see how far we've come. I know that sometimes these feelings can creep up on me, but I find that it's a really important part of the process. Sending you much love, my friend.

  8. Cary,

    I know you and I have discussed the grieving process. The measurements amongst the two and how one is always our reminder.
    Look at our progress, look at how far you have come, that IS amazing!
    I think it`s normal for you to feel that way. I have come to the conclusion that there will always be that ache. It is never going to go away, but as each year passes it will lessen. In the end it will still be there but it will just be a faint reminder to let us know what we felt was real.
    Hugs and much love to you.

    I am leaving you with this quote:

    Life is going to push you around, beat you up and it`s going to scare you. But then, one day, you realize. You`re not just a survivor. You`re a warrior.

  9. So glad you didnt take this down, since I just found you. This post struck my in such a personal way. I have said and felt EXACTLY what you have written. Thank you for sharing and making me not so alone feeling