A Very Special Case.

This is how Case dances. It's SO funny! I don't know why he opens his mouth like that but I think it's the cutest thing EVER!

The other day I was talking with an old, dear friend I ran into. I  referred to the last two years as "my life turning upside down". Then I realized, that maybe our lives turned right side up? I've been through more changes in the past two (ish if you count my pregnancy) years than the whole 26 years of my life prior. It wasn't just Case, Dan's job changed, the kids went to public school from being homeschooled. The way I thought, felt, and saw things changed. Everything just changed. I look back at simple and I don't miss it. Sure it was easier but it was less blessed. I think of all the words I never knew I'd know. The people I'd never imagine I'd meet. I  not only know what PFO, ASD, VSD, IUGR, GERD, Whole Exome Sequencing, GJ and Stenosis of the Foraman Magnum mean but also what they mean for Case. I went form being a mom to being a mom, a nurse, a cheerleader, a fighter, an advocate, a scheduler, a puke catcher, a tube wrapper, a Stoma cleaner...

Dear Case, Today you are two. It's been two long years. Two years ago today I was laying in a hospital bed with empty arms while you lay in an incubator in a NICU 7 miles away. It felt like 700 miles were between us but I kept reminding myself that you made it. You were alive, which is more than they predicted. I was scared. I was tired. I ached for you. I was beginning a journey that had a lot of bumps and turns, ups and downs and I had no idea if I was strong enough. Even now, sometimes I wonder if I'm strong enough. Now as I sit here watching you bathe, smiling and bright. Tubes draped over the tube, a port in your belly and scares here and there... I look back at a narrow, tear stained, rocky, pot holed, beautiful, bright, long road. This journey is more than I bargained for but has paid me back ten fold. You've brought out the best in me and though you I'm getting over the worst in me. For every one tear you've brought me one hundred smiles. For every sleepl...

Here I am. 2 years later. Two years after the hell that was Case's  pre-birth. It's been two hard years. Two years full of blessings and tears, hope and disappointment. Two long, worth it all years. As Case's birthday approaches I reflect on his life and pre-life. This has been the hardest thing I've ever done. Learning to take "one moment" at a time. Teaching my self not to get caught up on all the "what ifs" and  that it's okay to grieve the "never-will-bes" such as nursing my fourth, cheering him on at a football games, etc, etc. I've learned that things don't go as planed. That crying heals. That not everybody will always understand. I've seen that what I thought would be was overrated. That I need Case as much as he needs me. I realize I wouldn't change him for the world because he is a new-kind-of-perfect. I realized that no mater how many times I go though one of his surgeries, I'll probably always cry whethe...

Going. Going. Going. Gah! Lately it's been just that. I'm going and going and going..Between Case's fever, poop troubles, all of his care and 3 other needy children there's not much rest for momma. At the end of the day I feel totally exhausted. As I lay in bed I let the things that didn't go my way go and thank god for all that I'm blessed with. As I prepare for yet another surgery on my sweet boy's body (this Wednesday) I feel oddly at peace. This is surgery number 5 not including his GJ tube placements or any other procedure he's gone through. No, it's not fair for a not quite two year old to have endured So. Incredibly. Much already. To know pain daily and to live hooked up to tubes. But I think of the Spiderman quote, "With great power comes great responsibility." Case has a God given power to spread joy, open hearts and bring peace without words. He does this and expects nothing in return. He is incredible. A hero. The least I can d...

Case is behind in speech but communicates very well! Today his therapist taught him some signs and he did great! Here he is popping bubbles and "talking" to the therapist! :)

Case puts the dish towels away for me every time. It's so cute! This is a little dark but worth the watch.:)

Being a mom of a "less than typical" child in the eyes of the world changes how you look at, well lots of things. For instance, the common fever for Case could and has sent us to the hospital. So, I decided to compose a list of a a few of a special needs mom's least favorite things (from my perspective;) *Fevers. No, nobody LIKES fevers but for a child with special needs there's so much going on on the inside that a fever could mean a very, serious infection and lots of hospital time. * The show, "The Baby Story". I used to love that show. Now, it really yanks a nerve. Maybe I'm a little jealous that my birth of my special child was less than typical or I'm annoyed that the stupidest, little complication will send everyone into a frenzy. Either way, it annoys me. * Watching other children eat at a restaurant. It just hurts my heart a little for my son not to be able to do what most moms (including me with my other children) take for granted. Ea...