President Thomas Monson
This past year, Rob and I spent time pondering how to best help Emma. We were given the opportunity to put her through another round of testing. This was her second test on her blood. So, with a vial of blood from Rob, Emma, myself, a sizable check and a great amount of hope, we submitted to yet another test. This test is apparently the latest of technology, the best hope of defining what could possibly be "wrong". After several weeks, the results came back normal. Again, we are told Emma is "normal". At this point, there is nothing to be done but quietly submit to the result, shaking our fists to the Heavens, grilling the genetic councilor, crying and crying are not responses that seem to work so, we save our energy and press on.
It has occurred to me that what is really important is that Emma is happy and healthy and that she is getting what she needs. Does it matter what is "wrong" with Emma? Will it make a difference to know she has XYZ syndrome? Can we do something more for Emma? How much time and money do we spend to define why Emma is the way she is.
DOES ANY OF THIS MATTER???
Maybe. What if we can define the syndrome and learn that there will be health complications to watch for. What if we define the syndrome and learn that a new therapy is available to help with cognitive processing. What if we can find others who have blazed a trail before us or who are behind us on our trail.
What if's are hard, they make us question, they poke holes in our resolve to just love Emma and move on. We of course love Emma and we press on but is there something, is there just one more thing, one more test, one more doctor, one more...................
Just love Emma. The problem to solve=the syndrome to define must never be so consuming that we forget to enjoy and have fun with the incredible girl that we have been given.
Just love Emma.
3 comments:
You are both great parents! I admire all of the love and hard work both of you give to a "Special" little girl. She is one of gods perfect little spirits keep your spirits up and God will continue to bless your family.
Love Pat
We are all blessed to have her and you in our lives. She has made me and my Jojo better people and taught us many lessons we may not have ever had the chance to learn if we were not lucky enough to have her as a part of our family.
I don't know if this will help any Amy, but our youngest son was diagnosed at 4 months of age with Williams Syndrome. I realized after his first birthday that the trials of all the health issues that arise from the missing "elastin" gene (the marker gene for WS) had still consumed me more than just enjoying my baby. So maybe even with a "name" a "diagnosis" a "syndrome" it is still easy to forget the child and get caught up in the "label". It is a challenge to put the child first and not the what's "wrong". I think you said it beautifully! All the best!
Post a Comment