Sunday, March 1, 2009

The real reason I never remarried

My niece Marianna and I finished building my sled for 6633 Ultra and I took it for a four hour run. We struggle on the design for days arguing since it fail to work several times. I joked with her that if we had been the group WHAM today at around 2pm it would have been when George Michael and Andrew Ridgeley disbanded. finally around 4pm it was finished and i was happy to go for a test, I think my niece was happy to see me leave for a few hours as well. As i was leaving i waved and yelled "Can you believe I never remarried?" "Such a catch"

After a few adjustments the sled worked just fine, considering i used what ever materials I could use from a bike child carrier and an ice fishing sled.

Today was my long run and i couldn't been any happier. There has been a lot on my mind lately, from just the regular challenges of a single parent who travels a lot, to the races itself, to dealing with Karl's new diagnosis. When I run i can hear the silence, its like there is nothing there but the road and I, very cleansing.

6633 is proven to be a very difficult race to plan and I am sure it will be to execute as well. I am consume with details on what to wear, eat and race plan such as when to sleep, I am trying to work every possible scenario since it's such a difficult race, the wrong kind of sleeping bag can mean the difference between finishing or not finishing. I am feeling a bit better about it, I am getting to the point where I think that at this point I can only do my best and see what that means. The training that Ray has me on makes me feel like a drunken Koala, i am incoherent by 7pm tops!

This is where my fingers have a hard time moving forward, Karl was diagnosed with Bardet-Biedl Syndrome or BBS for short, the specialist don't think i have much to worry about but the truth is that it's hard not to. in short this is what BBS prognosis is

Growth and development: Mental and growth retardation
Behaviour and performance: Poor visual acuity and blindness
Eyes: Rod-cone dystrophy (sometimes called atypical retinitis pigmentosa), myopia, strabismus, and cataracts
Hand and foot: Polydactyly, syndactyly or brachydactyly
Cardiovascular system: Hypertrophy of interventricular septum and left ventricle and dilated cardiomyopathy
Gastrointestinal system: Hepatic fibrosis, central obesity and diabetes mellitus
Urogenital system: Hypogonadism, renal failure,4 urogenital sinuses, ectopic urethra, uterus duplex, septate vagina, and hypoplasia of the uterus, ovaries, and fallopian tubes.

In short there is a high risk of renal failure. Karl is still going for further testing to determine which of the 12 kind of BBS he has, since he is not obese or mentally challenge the prognosis is good, most likely is a mild case.

This however was brought a new range of feeling, I felt silly running for Karl's vision after finding out that that was going to be the least of my worries.

Running brought a bit o clarity and peace, I am running for the love of my kids no matter what they call what he has, it is still for them. I also feel blessed to think that if it wasn't for all my crazy quest to find a cure i wouldn't have meet the doctor that wanted to know, the "why" this was happening.
Now the doctors can monitor his health. I just make me feel that the purpose just got a bit deeper so it's not likely that I am going to go away anytime soon. I plan on making as much noise as possible.

Is strange how my journey is going in a completely different direction that I anticipated, I went to church today for the first time in a really long time. While i hadn't become atheist, i just didn't go to church anymore. In Brazil at a very tough time I asked God to help me get pass the pain, I was also scared of running alone on the deserted roads, I never though i was going to find my way back to a pew on an ultrarace but this is my journey and I intend to follow it no matter where it takes me.

On my run I also reflected about the whole generic lottery, the odds of Karl being born with BBS are infinite, both his father and I have to be carriers and of course this is something that my kids have to take into consideration when choosing a spouse, there is always a risk of passing the gene, i imagine my choice if I had know of this, would I have gone and married their father? and the truth is that how could I not, my kids are perfect in every way, i feel terrible and wish that this was happening to me and not Karl but he is the most amazing kid in the world.

I just watched Slumdog Millionaire and it reminded me that powerful love stories happen in many different forms and sometimes under amazing circumstances. Maybe this is how my love story was suppose to unfold.

1 comment:

Lisa Kauffmann said...

Keep going, keep fighting, you are an inspiration to all moms with children who have disabilities and difficulties...I will join you in the noise making department!!!