Happy #MedicalMonday! Hope you all are having a great summer so far! This week we have the Tebben family sharing their story:
“Although this condition was not on our original MCC, we saw both of our kids being advocated for, read about them and saw what potential they could have in a family with health care available and a country with good accessibility. The gap between ‘what is’ and ‘what could be’ was just too large and we could not walk away from their files and sweet faces.
For Spina Bifida it really is all the unknowns. But as I grew a network of families and other people that had experience, I gained more knowledge about potential issues and treatments or management of their condition. Having a circle of people walking the same road is critical. And knowledge is power. I am not a nurse with medical training. I learned as I went, one step at a time.
They both go to the Mayo Clinic’s Spina Bifida Clinic to see a team of doctors to meet their needs and management. After getting the immediate things dealt (tests, examinations, MRI, xrays) now we are mostly on a ‘every 6 month’ schedule. There are surgeries and issues that pop up that take us back more often at times.
We have a two story home but the only modification we have made is a ramp in our garage and converted our first floor office into a bedroom.
The bad is that large nerve damage cannot be ‘undone’. If there is paralysis or incontinence, that will always be. But the good is there are many roads to manage these issues. Countries like the US are so handicap friendly for the most part. Many schools go to great lengths to accommodate for kids with disabilities. I have been amazed at the support we have received at our neighborhood school. We have received grants for a hand crank bicycle and plasma car for our daughter. There is a Family Wheelchair camp just 30 miles from our home. They take swimming lessons and baseball in the city’s Adaptive Parks and Rec. We have seen many needs met and it has only been a few years.
Both of our kids have adjusted very well. As mother and father, we have made great connections and bonding with them. They had a great year in Kindergarten and piano lessons too! They both picked up English very quickly. Our son had a speech issue that is already gone in one years time.
Be prepared for the worst case scenario, but pray for the best. Gather your family or friends or church in support of your journey. Find out what is offered in your school and city for these kids. Network online for parent groups who are walking similar roads. Be prepared to be amazed by the strength, beauty and resilience of a child with a neurological condition.”