Frustration...

Today has been one frustrating day.


M had an appointment with the neurologist. Again. I really know our neurologist better than I wanted to. In fact, I never wanted to know a neurologist. Not as a patient anyway. Or the parent of a patient. But anyway.....<sigh>. 


He's a nice guy, our neurologist. His mom worked with my dad. Both were teachers. He comes from good stock, I guess. Smart guy. 


But he isn't God. 


He doesn't have the answers we need or want about why M can't or won't sleep well. 


We know M has seizures in his sleep. We've tried 3 anti-convulsants. Nothing works...not consistently anyway. 


Now they want us to give him an anti-psychotic. 


His mama can't do that. He's 3. 


He isn't mentally ill. He isn't autistic. This particular drug has been approved for use in schizophrenics and autistic children older than our little guy. Not for sweet, energetic, happy 3 year olds that have seizures in their sleep and can't stay asleep. 


I am just so frustrated that we travel all over to see all the professionals that the professionals tell us to see. We try the medicines. We get the equipment. We have the therapies. And they don't have any real answers. They can't tell us why M has seizures in his sleep. They can't tell us why he can't hear well. They can't tell us if he'll catch up or remain developmentally delayed. They can't tell us if he has an overarching neurological disorder. They can't tell us what to expect in the future. And, sometimes it feels like we're no further down the road than when we started all those months ago. No one really knows much of anything. The experts don't have the answers. They just want us to see more experts. 


Next up has been the recommendation for genetic testing. 


Geez Louise. 


I wonder if his genes will show that our little guy was born, most likely prematurely, in the 3rd poorest country in the world to a malnourished mother who looked for work and had to abandon the baby she couldn't feed.  I wonder if his genes will show that he spent the first year of his life in an orphanage with a rotation of nannies trying to care for too many babies. Or will the geneticists, after learning he was born in Ethiopia, ask me for the name of the hospital where he was born, as another professional (with a phD no less) did, and reveal their utter ignorance? 


Will his genes show that in all his educational testing the one and only area that tested at or ahead of age level was his coping skills? The psychologist praised his coping abilities while this mother's heart broke at the realities of life that caused him to develop such extraordinary coping skills. 


Will they show his great capacity to love, to forgive, to laugh, or his love for music and rhythm? 


Or will they just give him a label? 


Honestly I don't know what to think. In so many ways a label would be helpful. But it seems unfair to slap a label on my little guy and define him by it.  


Ultimately, M is who his Creator made him to be. How do you label the creative mind of God? 


Dare we label it and call it defect? 


And still, I'm so frustrated with the lack of answers, the lack of real knowledge from the professionals and yes, the lack of sleep. 


Today has been frustrating. 


Here's hoping for a better tomorrow and the wisdom and spirit to move forward in the dark. 


Heather