I saw something recently that really hit home with both Brian and me.
“It takes a special kind of person to care for a child with special needs.”
A child with special needs will inspire you to be a special kind of person.
This is true! It is so very VERY true! Many people have told us that we are special to be able to care for Drake. The truth is...we aren’t any different from anyone else. We have indeed changed, and that is because we have been inspired by both of our children to be the parents that they need us to be for them.
From their very first day, our eyes were opened to a world full of things that we took for granted...healthy lungs, immune systems, full development, ect…Yes, we had heard of a NICU and even thought we knew what it was, but we didn’t have a clue! We thought it was a place with special doctors and nurses who cared for babies born a “little” early for a few days or weeks until they were ready to go home. The thought of babies being born months before their due date was foreign to us. Needless to say...June 23, 2012 was a shock to our reality!
142 days...that is how long we lived in the NICU with our Micro Preemies. However, preemie life doesn’t end when you walk out of the hospital doors. Here we are, two years later, still living the preemie life. It’s a good life! It’s just not the life we anticipated. Hearing about the new respiratory virus on the news (Enterovirus 68) is scary for any parents. If you are the parent of a preemie or micro-preemie, multiply that fear times 1,000. If you are the parent of a child on a trach/vent, multiply that fear times 1,000,000. So here we are...caught in a Catch 22. We have doctors appointments and vent clinics in both Tyler and Dallas over the next few months. In order to do the follow-up appointments to ensure Drake’s health, we have to go out into hospitals and clinics which will expose us to germs and jeopardize his health. We will do the very best we can to protect him for any and all germs, and we will continue our daily prayers for healthy lungs.
Drake’s new swing that we ordered over the summer finally arrived today!!! At first he wasn’t quite sure about it, but then he started getting the hang of things. It is a tummy time swing to help with development. He also tolerated wearing his AFO (leg braces) in his stander for the very first time! This is a HUGE step forward!!! I gave Drake a much needed hair trim today and then I nearly cried...I trimmed too much! Yes, I know it will grow back, but it was still hard on this mama. My little sidekick, Kennedy, is always ready to help out or ride along. She is also a wonderful encourager for her brother. “Yea, Bubba!!!” is heard in our house daily.
Our latest trip to Dallas was our meeting with Drake’s neurologist. He upped Drake’s seizure medication dosage, and thankfully that really seems to be helping decrease the amount and intensity of his seizures. My sister and a dear friend watched Kennedy and Harper while we were gone to the appointment. Thank goodness for family and friends!