I have been thinking so much about all the changes that have happened in my life since Makily was born. I had no idea the ways in which my life would change that Thursday night when I laid in bed laboring and trying to give birth to this kid.
My baby girl is starting Developmental Pre-K on Wednesday.
There have been many times in the past three years of my life that I NEVER thought we would make it here. I recall the awful four weeks Makily and I spent in Shands when she was six months old. That was one of the worst times of my life and I hated every moment of living in that nightmare day in and day out. It seemed like each day was worse than the last and I thought we would never leave that place. I could tell story after story of all the terrible things that went on in that hospital for us during that time. I will spare you with just this one. Basically to add some humor to this particular entry.
So during our long four weeks stay (and while I realize that four weeks to some ISN'T that long, IT IS considering all she went in for was a leaking G-tube) we were moved around from room to room to room. Sometimes in the middle of the night. One of our moves was particularly strange. Makily was kind of in the "step down" phase...not PICU worthy but also not stable enough to just be in "no man's land"....errrr uhmmmmm I mean the regular Peds floor. So we were put in "special care step down". It's a large room with TINY cubbies for each patient. When I say tiny I MEAN TINY. There literally was enough room for Makily's crib and my sleep chair butted RIGHT UP next to it. I called it our "hole". For some strange unknown reason they had a 23 year old woman in the bed next to us. She was a psych patient. I told you we had great luck. She talked CONSTANTLY. Most of what she said I could not understand, it was alot of gibberish most times. The nurse in there apologized to me almost hourly, which was a change because usually when there were mistakes made or inconveniences you were looked at as though you were a bother....ya know "how dare you complain that your six month old is in with a 23 year old crazy lady". We couldn't sleep, I couldn't think straight. I decided one night to get a audio tape of this woman. I couldn't resist and I knew no one would ever believe me that we were SERIOUSLY put in with a 23 year old psych patient. I mean we were on the PEDIATRIC SPECIAL CARE FLOOR.
Listen closely to the chatting in the background, remember this was ALL DAY every day!
Now on the other hand there were more days there that were not humorous in any way, although I tried desperately to find humor...somewhere. So many days I sat in the PICU with Makily, tubes down her throat, in her stomach and up her nose. I can still smell the hospital tape that was all over her, the soap I used every day and the sour smell of her little hand when her IV would blow and they would unwrap it and place another. I remember vividly the frustration of trying to hold a hypotonic baby with tubes, wires, and bandages all over her without pulling anything or hurting her. It just all seemed so unreal. I kept thinking "This only happens to other people........I guess I am one of them now".
Some memories just never seem to fade to gray, these memories for me are as vivid as the day they happened.
I remember this time because it was one of my darkest with Makily. It also a huge bonding period for her and I. My motherly instincts had FINALLY seemed to kick in the night they were letting her WRITHE in pain in the bed and did nothing. I felt like a part of me had awoken and that even though I didn't know what the future was going to be like for her or I, that I would be damned if they were gonna let my baby lie in bed in agony because they were too busy or simply didn't give a darn.
So I look back at where we started, where we have been and where we are going and I am in awe.
In awe of Makily.
She is not the child I dreamed of having,
in fact she isn't even the child I wanted when she was born.
She is the child I NEEDED, the child I was destined by God to have and the child that has changed me in ways I never imagined a child could.
She is the child that has taught me how to love UNCONDITIONALLY, to look past disabilities, to see that every special needs child is truly a miracle. It's all I can do NOT to approach a mother in the store pushing her child's wheelchair. I immediately feel a connection there, an unspoken one that you can truly only know if you walk that road.
I see kids with trach's, g tubes, feeding pumps, tight muscles, scars and oxygen and I am in awe of them too. These children have a gift of showing other's what is TRULY important in life without using the spoken word. What's sad is that so many people (me included at least the "me" before Makily) can't look beyond all the medical equipment, disabilities and struggles and see what is behind all of that.
These children have the strength of Goliath and the patience of Job. I know some adults would be frustrated with the day in and day out therapies and treatments. Many would just give up. Not these children, they continue to fight to survive because to many of them, it's all they have ever known. Makily does not know that eating is supposed to be easy for her. She doesn't realize that walking should have been something she started doing EASILY over two years ago. So she continues to work hard during therapy, standing on her two now chunky legs until they begin to shake because she is trying so damn hard.
I am in awe that after all she has struggled and suffered through that she still manages to laugh and giggle at the small things. That she can go from hysterically crying from a terribly painful procedure one minute to hugging and snuggling me while smiling the next. That she wants NOTHING from ANYONE except to be loved. That's all, she just wants to be loved.
I am not sure how much more perfect her spirit could be.
Money and material things will never matter to her, she won't complain to me when she is older that she MUST have the newest Polly Pocket or that she hates me because I won't get her the cell phone she is demanding. She will always be my baby.
Although her worldly body has failed her time and time again...and most likely will continue to, Makily will always be a perfect, innocent soul. What God has given her this world cannot ruin.
And for that, I am forever grateful.
