Go on and Cry

I spent some time over lunch break today researching walkers and rollators (a new term I just learned describing walkers with four wheels) for Gavin. I looked for contact information for a few members of the Utah Spina Bifida group that we were actively involved in for the first year of Gavin's life when we lived in Heber. In my search, I stumbled upon several email updates that I shared right after Gavin's birth and I reread them. In the March 23rd email, I described discovering spinal fluid leaking from his incision just the night before, rushing back to Primary Children's and the shunt they were placing in his head that very day.

I've shared stories and letters I have written before about Gavin. And, I am still always surprised by my reactions. I read this:

I think we all knew of the likelihood that Gavin would require this surgery. . . unfortunately, as a mother of a three week old infant that is having a second major surgery . . . I am clearly devastated and not handling it as well as I had hoped. Nevertheless, we have developed an even stronger love for Gavin than we thought possible and will do anything we can to protect and care for him.

And, that familiar lump formed in my throat and tears welled up in my eyes. Still fresh from three years ago. Still fresh now for new reasons that develop each day.


I continued my search for resources on mobility devices - and within minutes I found this post from a fellow mom of a little boy with Spina Bifida. And, I wanted to share it here. I don't want to be the mom that constantly complains about my job, dwells on the frustrations of life and the despair that often comes from being a mom to a child with a disability. But, I also want to be honest. Writing helps me sort out and deal with my own feelings.

But, today I will share feelings from Toby's mom. Because I couldn't have said it better.


When Toby was in the NICU a lady whose son went to my college came to visit me one afternoon. This was about the third week of our stay and I was just ready for the whole ordeal to be over. Her son had Spina Bifida and she came to just sit and talk and answer any questions that I might have. Well, I am sure I overwhelmed her with my ridiculous amount of questions. and you know I can barely remember some of her answers. But one thing she said to me has stuck out almost 4 years later. You know the kind of thing that sticks so bad that you can even hear the inflection in the person's voice when you think it over in your head.

In a somewhat sad and tired voice. She said, "Kari, You're gonna cry" but with a smile on her face she said, "and it's okay." I thought at the time this was unusual. But she said it quite a few times and therefore it seemed very significant to her. I thought I had cry all my tears out. My son was here and how could I cry anymore. I knew there would be hard times, hard surgeries and things of that nature in which I might cry, but now was not the time.

What I didn't realize was how true those words were. There will be days when there will be no reason, no significant thing that happened, but you will cry. There will be days when a thought will knock the breath right out of you and you will cry. I child will run past you with his little legs and you just might cry. Sometimes I feel guilty for crying. I have my son. There are so many families out there fighting such scary things. Three families I know of that just recently lost their children to cancer. There are families who have multiple miscarriages or children in the NICU fighting for the very next breath. I have my son. But needless to say, You most likely will cry. There will be sadness.

But then comes the next part, "And it's Okay."

I'm so glad she added those three little words on the end. It is okay. And that is why I wanted this post to go under the taking care of you. It's not a makeup tip, or hair tip or diet tip. But how true is it that crying and taking that time to mourn and heal is really taking care of yourself. It's okay to cry. It doesn't mean you love your child any less or that you feel like you have it worse off than another family. It's just crying and it's going to happen and.....It's Okay.

You get up, dry your eyes, pray for strength and you keep going.

And you know the funny part? That day when you felt like your heart was breaking is so easily forgotten with the next smile from your child.