The Search

When you have a special kiddo with multiple issues but no overall diagnosis it's like being lost in a land without road signs. Sure, you treat each problem that comes along: flat tire - change it, seizures - give them meds, run out of gas - stop at the gas station, delayed milestones - do therapy. When you have a collection of "minor" diagnoses, but nothing that explains it all, or how all these pieces fit together, you're constantly wondering if you should be doing more, if there's a treatment that could make a difference.

All the new information about Little Man this week has reinforced the need to at least keep looking for that big answer. I was talking to a dear friend of mine who is in a similar situation with her own son. When you take your child to different specialists, sometimes its hard for friends and family to understand. "Why do you want something to be wrong with your child? Why are you hoping this test or appointment or whatever gives the big diagnosis?"

The truth of the matter is that no one wants something to be wrong with their child, but sometimes things aren't how they should be. People do not simply pass out or bruise or shake or have trouble learning without a reason. I think most every parent of a special child who has been waiting for an answer is both relieved and disappointed each time that reason eludes them.

On the one hand, you can secretly hope that if they don't find the answer that somehow things will turn out okay and this will have just been a phase. On the other hand, you know that something is wrong and it's much easier to fight the enemy you know, than the one you don't.

Having an answer doesn't necessarily mean having a cure, or even better treatments, but it does give you an idea of what to expect. Finding out your child has something treatable would be amazing, finding out it's something chronic but stable would at least mean your child wasn't going to get worse, and finding out it's something progressive would be absolutely devastating and yet at least you could make decisions appropriately.

The search is a very personal decision, but please understand that if you're not involved in the search for your own loved one, the emotions and choices are felt very deeply and we're all doing the very best we can for our own children with the information available to us right now.