In one of my most recent posts, I inadvertently said something that hurt some people. The same people who are very near and dear to me, that I care for greatly, and who have supported me through all the ups and downs. Offending them was the last intention I had when I said that I have learned that "there is a difference between living with citrullinemia and living".
My error was that I failed to elaborate. So let me correct that error here and now.
For the 5 years that Alexa had citrullinemia, I LET citrullinemia run our lives. The fear and anxiety of managing citrullinemia took over our lives and I LET it be the deciding factor in everything we did.
Did you know that there were times, after I put Alexa to bed, I would retreat to my own bedroom, sit on the bed and stare at her monitor with a knot in my stomach waiting for what would happen next. If she slept too easily, my anxiety would lead me to think the worst. If she was restless, my anxiety would lead me to those same bad thoughts. I couldn't eat, I couldn't sleep. All I could do was sit, stare at the monitor and cry.
Did you know that not one day went by last year where I would go to pick up Alexa from school without that same knot in my stomach? Waiting to breathe a sigh of relief upon hearing whether she had a good or bad day. A bad day meant that I would have to be super alert for any signs of high ammonia. A bad day meant that I was more likely than not going to the ER just to be safe.
That anxiety was paralyzing and ruling our lives.
Did you know that I have wanted to put Alexa in ballet and dance since she was 2 or 3? But LET her diagnosis deter me from it. I was too afraid of her catching illnesses to enroll her.
Did you know that before Alexa was born, I had plans to take her to visit family in Ecuador when I was on my maternity leave? But I let the fear of being in country where they have more than likely not ever heard of citrullinemia stop us from visiting.
Did you know that my fear kept us from taking part in a family vacation to Cuba because the resort was a 2 hour bus ride from the airport? And a 4 hour (at best) plane ride away from our hospital...
Did you know that we have always wanted to take Alexa on a cruise....but of course, there was no way I was going to have that happen...what if she got sick on one of our "at sea" days, what if the hospitals in one of those ports did not have her emergency medication on stock? So guess what, we put it off. Fear of the what if's made me put it off time and time again.
I could easily have fallen back into the same trap after transplant. Go back to that place where the fear of catching an illness forced me to keep her away from all those extra curricular activities. I could have easily let transplant take over the new excuse for not going out there to do all the things we have wanted to do and have Alexa experience all that I want her to experience. And to be honest, there were a couple of times where I almost did go back to that place. You know--THAT place where I try to keep her in a bubble to protect her from all the germs, viruses and illnesses out there. But out there is where the world is. Out there is where we have to live.
And this is where things changed for us. Our transplant team refuses to let us go back there. When I asked our transplant team what they thought of me taking Alexa to Pennsylvania last October. Their response was "Of course!! Why would you think it would not be okay???" That is their response to everything! When I called and asked about dance and gymnastics...I got the same response. They know we are scared but they refuse to let that fear stop us.
So you see, it was not the UCD or citrullinemia itself. There are many, many families I know who have a child with a UCD or are UCD adults themselves. They made it on that cruise, they have been to Hawaii, they do all those extra curricular activities like dance, track&field, soccer. They learned what we did not--How to manage both living and citrullinemia in equal parts. How not to let it take over all aspects of our lives.
Citrullinemia is a huge, undeniable part of our lives, of Alexa's life. But it is not ALL of her. She is made up of so much more. And now that we know that we don't have to fear everything, now that I can breath a little easier, it is my job to show her all I can to help her decide who and what she will be. It is my job as her parent not to fall back to that place where fear and anxiety dictate all again.
I have to teach her now that the way WE were living was not taking advantage of everything we had at our fingertips.
Citrullinemia wasn't stopping us....my fear was!