It was 5 am and after awaking to a lonely, empty bed, my good husband brewed the Starbucks coffee and went outside to pick up the paper. A few minutes later, he found me asleep next to Zoe, half out of ( as only my 6 ft. body could be) her less than twin size bed. " Hey Suze" he called, "you guys are on the front page of the paper." I drank a good half cup of the hot brew before I dared to read the story. You can read it here.
I have been interviewed by a few reporters in the last two years, on subjects important to me; the pediatric medical community, advocacy for children with special needs, and of course, mitochondrial disease- which affects both my girls.
My greatest hope is that the words that make it into print , reach into peoples hearts and minds- to motivate. That the words motivate physicians -to continuing listening and learning. That the words motivate teachers-to raise discussions, ask questions and learn more about our children's challenges. That the words motivate parents- to find the proper resources to help their child and to help them find the energy and determination to keep
A lot of the " great" advice I thought I offered- did not make it into this article, but our story of persistence did. So did the words mitochondrial disease- and the general theme that sometimes the Mom is right- even when no one else agrees, will hopefully empower other families.
This article portrayed the image of a strong woman. Sometimes I am. Right now, however, I feel vulnerable again. Tomorrow, we travel as a family returning to the Cleveland Clinic.
There will be tears, and needles, and anesthesia, and scans- and a very gifted doctor caring for our kids.
We are walking the same path we traveled with Zoe, a year and a half ago. But this time it is Olivia and Zoe, more tests, more doctors and finally more answers. This time, I am not weak with worry or even seeking validation. I am just thankful that we have somewhere we can go to get the answers to our questions and care for our children. I am in love with their smiles, and their tears- and the kisses that they give me each day. And I am thankful that our journey of persistence was ultimately, successful.