I Remember…

September 26, 2006

I remember when they told me that you wouldnt be with us long. I sat in Dr. Huhta’s office, rubbing my very large belly lost in complete dispair.

You were our suprise baby, the baby we hadnt planned but the baby we wanted to so desperately. I remember telling my parents on Thanksgiving day that, despite the fact that your brother was only a little over 4 months old, he would be a big brother soon. I remember the joy that filled our house for the next 23 weeks.

I remember the overwhelming strength and determination I had after we found out how sick you were. I remember finding a fight in me that I never knew I had. I remember believing so strongly that you were going to be just fine, you just needed some time to prove everyone wrong.

I remember laying on the table for my amnio, and the doctor telling me in a very serious yet emotion-less voice that he knew someone who could take care of this “problem” for me. I remember vowing right then that despite the fact that everyone else had given up on you, I wouldnt.

I remember the day you were born. I remember the doctors telling us not to expect anything, that if you were born alive, you would die shortly afterwards. The fear that gripped my soul, and the joy that filled my heart. I was about to meet you for the first, and possibly last time. I remember hearing you cry and thinking to myself “Thats my girl, thats my girl”.

I remember the doctors coming in and telling us that they didnt give you long, and that we should spend as much time with you as possible, and take as many pictures as possible. I remember not being able to hold you, I remember your head being at the wrong end of the bed, I remember your body being so swollen and so red. I remember hearing the oscilating vent pump air into your chest at an ungodly rate. I remember holding your foot in my hand and willing you to hold on.

I remember, 2 weeks later, the doctors telling us that they could nothing more for you, and how my heart sank. I remember later that day Dr. K coming in and asking if he could talk to us. I remember sitting across from him, looking at him, and my soul begging him to find a way to save my little girl. I remember him telling us that he wanted to talk to another doctor in St. Pete. And that it was a long shot but he would do what he could.

I remember that evening. I remember his huge grin as he walked into my room. I remember his exact words. “How do you feel about a heart transplant?”. I remember my heart welling up with hope. I remember the transport to St. Pete. I dont think we have ever driven that fast. I know that we have a higher respect for passing ambulances after that experience.

I remember the almost 5 months you spent on life suppport. I remember the elation we felt everytime the phone rang, hoping that on the other end there would be a surgeon telling us that our baby girls heart had finally arrived. I remember the emotional exhaustion of sitting next to your bed every day, but along with that I remember the unmeasurable thankfullness that you had a bed to sit next too still.

I remember the day that call finally came. I dont remember the drive to the hospital, I dont remember seeing anyone on the way. I do, however remember that the nurses had dressed you up in the most adorable outfit, and decorated your bed for your “big day”. I remember holding you, kissing you, memorizing your face.

I remember them wheeling you into the operating room, I remember falling asleep in the waiting room and resting for the first time in a long time. I remember feeling peace.

I remember 3 months later. I remember knowing something was wrong. I remember feeling like no one was listening to me. I remember holding you, watching you not be able to hold your head up, not be able to gain weight, not being able to do the things that 8 month olds should be doing.

I remember the day I found out you had Mitochondrial Myopathy. I remember the mixture of fear and relief. I remember diving into this disease head first, because you deserved the very best care.

I remember the seizures, and the sleepless nights.

I remember the fear of last January, and the feeling of hopelessness and dispair while you laid in ICU for almost 5 weeks.

I will never forget hearing the word “Autism”. That was a word that we had hoped we would never hear, because again, you have come thru so much. You have been through so much

Which leads me to this:
I remember that you are a fighter. I remember how strong you are. I remember how much you love life. I will never underestimate your determination. I will never forget His promise. I will never forget that you are not mine, that I could not possibly love you as much as He does.

Next week marks 5 years since your transplant. 5 years that everyone told us you most definately would not have.

I remember our words to them. “You dont know our God.”

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