A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, September 23, 2010

A moment of grief

I caught a glimpse today. I tried not to, I tried to ignore it, but it still happened.

Nickolas, my happy and adorable child as a 10 month old, if at 28 days gestation his spine had closed. The glimpse came, out of the blue, when I was cathing him. We had just spent time outside playing, Katheryn was downstairs getting into who knows what. And the picture came.

Diaper changes without spina bifida, chasing a crawling infant, spending time relaxing and enjoying ourselves without appointments and forums and blogs, without scars and tubes and assistant devices. Yes the tears started flowing. Because if something had been different on that 28th day, then our life would have a completely different turn. I would still have my gorgeous and wonderful son, he would just be different, easier, more carefree; but he would still be Nickolas.

I wonder sometimes if parents of children with different diagnosis feel the same. Down syndrome, cystic fibrosis are genetic, something didn't happen during development they were created that way. So I feel guilty about what happened on that 28th day. Did I do something? Did I miss a pill? Drink too much tea? Have a hot bath or shower? Any of those things that they think might have caused that little bump in the road of development.

Of course I feel guilty even thinking these things. (And I love the forums and especially the blogs I read). And most days I truly believe that I am right where I am supposed to be. That things have worked out exactly how they are always supposed to be. I just didn't think that today, today I caught an image of something different, something that seems easier and more carefree.

I have a book called 'A Different Kind of Perfect' that has stories of parents of children with special needs. One of the chapters deals with grief. Grieving the child that you imagined when you found out you were pregnant.  I guess that this is left over grief. I wonder if it will ever go away, or if it will just fade into the background as I come to terms with our life. I actually had thought I'd come to terms with everything.

But while today brought a surprise need to reach for the tissues, I know that tomorrow I will once again bask in the joys of being the mother of two of the best children in the world! Just the way they are.


  1. sometimes it's nice knowing other mom's shed the same tears...
    I love that picture!

  2. First off - that's an amazing picture - just precious and so beautiful. Never stop taking pictures like that! :) And secondly, yes, I've certainly had those moments. Moments when you look around and think "man...if just one day had gone differently....if his spine had formed together properly...how much easier would life be...for him...for us..." It's tough. The "what if" is tough. And I think it's especially hard because to me - we have so many blessings we've been given because of Spina Bifdia - the added perspective and gratitude for every little milestone and success - the joy in things we might have otherwise taken for granted - the wonderful friends and stronger faith we might not have had if not for the trials. But along with the blessings - it's so easy to see the hardships. They are sometimes more obvious, sometimes more numerous, and always hard to swallow. We all have them - and that will never be totally gone. But looking at how things could be is 2 way street - because as much as we hate to say it - things could always be so, so much worse. There are so many families I've met along this journey that I go "wow...how do they do this every day?" or "how did they survive losing a child" or "how do they find joy in life knowing that their child's life is being threatened by disease or cancer right now...on a daily basis" I look at that when I'm feeling sad and think how much more heartbroken I would be if that were my family...if that were my Jet. So you are not alone little momma - we are all sad sometimes...we all wish things were better...but we are all so, so blessed. Sending you love! :) - Joanna

  3. Love the photo!

    I think there will always be points of grief, but they will get fewer and farther between and less painful as time goes on. It's not that we haven't worked through the initial grief. It's like new grief along the way. Sometimes it's at those milestones, like when other children start walking, or the first day of school. And sometimes it's really for no good reason! But if you're like me, give it a day or a week, and it passes and you have a hard time feeling anything but joy when you look at your baby. :)