Running around carrying Wren on one hip, diaper bag and back pack slung across my shoulders, chasing Cruz around a parking lot, I felt like my heart was going to pop out of my chest. Playing games around a parked car with a 2 year old pretending to ignore me and a 1 year old crying in my ear isn't my favorite activity in 100 degree weather, especially with cars whipping around behind us. Trying to think of appropriate punishments, or threats to yell out, or just simply tactics to outrun the 30 pound tornado while carrying an extra 40 pounds seems impossible in the stifling afternoon heat. This morning, leaving the gym, he stopped bent down and licked, yes licked, the floor. I almost gagged. We find ourselves in lots of unnerving, pull out your hair, make you wanna scream, swear you are delirious, laugh til you cry and cry til you laugh moments. But for all the long days and nights and screaming fits, we are not dealing with life and death.
This week I was so reminded once again of the fragility of life. My friend Ashley gave birth to identical twin girls. They were delivered at 30 weeks, after 3 weeks of bed rest in the hospital and constant monitoring. She wasn't scheduled for weeks to have her c-section, but one of the babies heart rates was jumping around. They discovered the cords were twisted multiple times and even had a knot in them. The doctor said that he had never seen babies live through that. The girls are miracles! Both are just under 4 pounds and able to breath on their own. Its amazing. I was so reminded of the fragility of life.
My friend Katie has a beautiful 2 year old little girl with cystic fibrosis. Daily they deal with medical issues and health concerns that most people couldn't imagine. A simple runny nose for anyone else may mean a few days of kleenex. For Kadyn, it may mean a hospital stay. This little girl has already had to deal with so many procedures and treatments at the age of 2 it is mind blowing. Katie's bravery and strength is absolutely remarkable, and again I am reminded of the fragility of life.
My cousin Nick's little boy, Conal, has NF1 which is a genetic disorder that causes tumors to grow on nerve endings. Currently, there is no cure or treatment. Nick and Carrie continue to monitor tumors on his brain stem and behind his knee. Conal is doing well, but NF is progressive, and they don't know what tomorrow may bring. Again, I am reminded of the fragility of life.
It seems so silly and trivial to talk about the fact that I was so excited today that Cruz ate a whole banana for the first time in his life. He seems to be showing progress in speech therapy. He is finally able to whisper the 'p' sound. If he wants to do it louder he uses a 'B' instead. But his B, M, D, and N are really getting good. Now we have to try adding different vowel sounds, which are incredibly difficult for him. We got his weighted vest in, which he loves. Which also makes me laugh. I feel like he is on his way to gymnastics. He looks like an acrobat, especially when he's upside down or trying to balance on a basketball. We laugh because even when he has the vest on he still needs the ball on his stomach for deep pressure and still pushes his head into the carpet for even more deep pressure. He has also switched gears in the social setting. He no longer covers his eyes but instead says 'ba' to everyone that he sees and insists on high fives and knucks, from total strangers. Which is at times really awkward.
We are trying so many different therapies and he is showing some improvement. But like I said it seems so trivial to be celebrating these baby steps when there are so many families dealing with life and death all the time. Cruz is a handful of course, but in the big picture I have very little to complain about.
For information on a weighted vest, or other clothing go to:
www.spioworks.com
Katie will have a page up soon for Kadyn's Krew, but in the meantime if you want to donate any money go to www.cff.org
To donate money for NF1 Research and read more about Conal click on this link:
Active Donations for Conal
