Thankful for that understanding.

Hey Sweet Girl.

I just cant believe you are 16 months and 4 days old... Where has the time gone? 2 years ago I was planning your arrival- totally ecstatic that within a few months you would be here.
Last year I was praying for your life. Never leaving your side.  We just found out a day before that they thought you had something called SMA. We were studying this disease, we started to prepare our life for this change. We were trying to breathe as we were sinking in this ocean of pain.  I never thought that would happen, that would be our life. That only happened to other people. Now we were there.

I remember the day Dr. Swoboda told us you had a neuromuscular disease of some type and she was leaning toward SMA.  You were sharing a room with a really sweet little boy who had been in and out of the hospital his whole life. I think he was 4ish.  His mom was one of the first people to talk to me after they got you all hooked up in the PICU. She was so sweet and assured me you were in excellent care.
On November 20th Dr. Swoboda did some testing on you. There was a lot of needle pokes, getting shocked, drawing blood and lots and lots of tears.  I stayed with you the whole time. We held our heads together and our tears soaked the sheets.  I hated seeing you hurt. I hated knowing you were scared and didn't know what was happening to your body.  The testing took what seemed like hours.  Dad came in the midst of the whole ordeal.  Grandma D and Grandma B both came as well but we asked them to wait in the waiting room until we came out.  After the testing there was no waiting, there was no discussing. I guess it was that obvious what the problem was.  Dr Swoboda asked us to sit down.  We sat in that chair/bed thing that I actually grew accustom to by this point.  I remember her sitting across from us, telling us this news that I just couldn't really comprehend.  You had a neuromuscular what.... A disease.  We were being told we might not be able to watch you grow, we were told you most likely couldn't ever walk.  The blood work had to be sent for confirmation but from the other testing done so far it was definitely some type of neuromuscular disease.  Your body was starting to fail you.  There are different types of SMA, what you could and couldn't do would vary and we wouldn't know anything for sure until it either did or didn't happen. Either you would learn to sit up or you wouldn't, either you would learn to walk or you wouldn't... There was no sure answer right now anyway we looked at it.  I remember her telling me the words SMA... SPINAL MUSCULAR ATROPHY... SMA... I kept saying those words over and over in my head. I knew I wouldn't completely understand everything she told us so I knew I would have to get online to find out more.  After she finished, she cried with us, gave us a hug and left.  I remember walking over to Makenzie- looked at her- turned to Ryan and just fell.  He grabbed me and I couldn't hold myself up.  He kept telling me to calm down and we would figure things out.  I was shaking and telling him... no, no, no... I just couldn't believe this.  He was worried about the other family in the room and nurses. I don't even remember them. I didn't want to be a grown up, I didn't want to put myself together, I didn't want to leave the room, I didn't want to try and understand, I didn't want to learn more, I didn't want to pretend that I can get through this.  I'm a kid. I cant do this. I kept thinking that. I just cant do this. Kenzie was fine by this point, she was over her traumatic testing and was busy shoving her fist in her mouth and staring at me while I cried.  We turned the TV on for her and Ryan insisted we go talk to our Mothers who were anxiously waiting in the hall.  We all cried.
We told our mothers what they just told us. I was so numb. I just didn't understand. I didn't know what to do. Should I go learn more about this disease, should I go back into the room with Kenzie, should I go throw up, should I crumble to the ground, should I run, should I act like I'm okay and go get food with my starving husband... I just remember feeling confused.
I cant remember what we did after. I cant remember what I did next. 
But that night, during shift change, I went to the computer and learned what I could in a few minutes time about SMA.

That time was so scary Makenzie. I was so scared for you. I was so scared for what life would be. I worried what would happen to you next.
But what I never expected, especially after those crazy thoughts came into my mind when I was pregnant and worried something would be wrong with you, That if this actually happened, I would look at you, and my love for you would never change.
I never really cared if you could walk, talk, run and play. I never really cared if I had to care for your every need for the rest of your life. The only thing that I wanted was to make sure you were happy, loved and know we would do anything and everything for you.
I am not sure why I thought I would look at you differently. Maybe because you can never really prepare for what feelings, thought or emotions you will go through in certain situations until you are smack dab in the middle of them.  I have said this before and will say it again, I always thought I would just die if something bad happened to my child- even before you came along I just couldn't imagine the thought. But there we were. In a hospital room, looking at the life you may or may not lead, monitoring your oxygen levels, going through various treatments, holding your hand, being your voice and somehow we grew the strength to endure it. 
I never ever imagined how much love I could actually have for someone until you came along,
I then never ever imagined how much love I had for you until this. 

You Ms. Makenzie changed the way I thought about most everything in life. You helped me grow in such a remarkable way. I no longer look at others the same. No matter who they are. You help me judge less and help more. You make me look at everything as if its a gift.

You are our gift. The very best gift we ever ever could receive.
Every inch of your perfect, amazing, beautiful self was a gift.

Give Heavenly Father a kiss from me, Because today, I'm so Thankful he gave me that understanding of how much I completely, with the most purest of heart, with everything I have - Love You.
I am missing you like crazy my little muffin.