I watch her do the walk/run thing she does with the most gigantic smile on her face. Her left leg and foot turn in from the curve in her spine. She hobbles along oblivious to what the rest of us see. "Dream Team, Fun Run" - the words that come out of her mouth. She dances while she hobbles along, blissfully in each step she takes towards completing another lap. She is beautiful. And I wish I was her. I wish I was the one smiling and ignorant to the real reality that exists below the surface of her life - of our life.
It's the first time (and this has been coming for some time now) that I have seen the physical ramifications of her condition. Before she looked normal - besides the purple lips - now the bone deformities are beginning to show and her ability to move is becoming more difficult. The curve of the scoilosis is above 40 degrees now. The left leg turns in at about 20 degrees. She spends time in pain after physical exertion. I am beginning to see the signs of decline. Her belly is filled with the ascites from her liver. I want so desperately to get rid of her GTube - she will be 9 next July - but I know her decline will increase rapidly if I change her nutritional intake.
But the answer still remains at no. No transplant. "She'll bleed out on the table". Words that echo in my mind. "It's just too risky, 5 heart surgeries of scar tissue to go through - she's gonna bleed out before we can remove the diseased organs". The answer remains no.
But today I saw the future. I saw my Big Girl as she would be in the near future. Her endurance small, her physical pain increased but still mighty in heart. Still alive with a smile while shaking her "booty" as she calls it.
Alexandra - you are mighty. I wanna be just like you. I want to take this burden from you.
But our answer will remain no. And we will keep going cause that's what we do. But I will continue to carry that image of her - hobbling and swinging her little frame around like it's no one's business - with me everywhere I go.
I can't change this path. The words I once said "Well how is sats of 80 gonna feel like at 15! She will get winded getting out of bed!" still echo so loudly.
Those words are coming to pass. Her body cannot do what it used to. She is in pain.
But the answer still remains no.