BasicallyFX

One of the most difficult aspects of Fragile X for Duhdee and I is managing our expectations when we are planning activities with Monkey. It may be that we’re excessively childish, as I sit here I’m listening to Duhdee scold one of our fish for disturbing a plant in the tank so that seems rather likely, but I think we’re actually fairly typical first time parents. There are so many things we want to experience with Monkey and we get rather excited about them and sometimes that excitement means we get carried away.

Every summer we take a family vacation in the mountains of Maine with my family. They have a second home there and we enjoy spending a couple weeks fishing, riding the quads, shopping at yard sales and just generally relaxing with my parents and younger sister. This past summer we decided to take 3 days and drive across the border into New Hampshire to visit one of my favorite places as a child, Storyland. We had learned that if you buy tickets after 3 you are given free tickets to use any other day that season so we showed up at 3:10 intending to get our free tickets and spend the final 3 hours of the day playing.

This is a classic example of how we let ourselves get carried away with our excitement. We entered the park and had Monkey on his first ride within 15 minutes. It was a roller coaster. Now, pick up your jaws. We fully recognize the error of our ways but at the time it really did seem like a good idea. And, in our defense, it was a really scaled down roller coaster.

Anyway, a quick ride on the Polar Coaster, followed by a quick ride on the Cuckoo Clockenspiel resulted in a totally shut down Monkey. The picture that Duhdee took of Monkey and I on the Clockenspiel is painful to see. You see me, grinning like a fool (who is determined to have FUN DAMMIT), and you see Monkey on my lap. You can tell just by looking at his eyes that he’s gone. It’s just awful. I look at that picture and want to slap myself. Monkey recovered himself just enough to scream and cry bloody murder until we finally dragged ourselves out of the park, defeated, depressed, and ready to quit. We agreed that Storyland was a very bad idea and we had every intention of trashing those free tickets.

The next day we had plans at another area attraction. Remind me to tell you sometime about what a HORRIBLE idea it is for a mom who is afraid of heights to take her just turned 3 year old child with FX on a 60 minute round trip ski lift ride. Oh, wait, sane people don’t need anyone to tell them that that is an exceedingly bad idea. Never mind.

Anyway, during the next day I spent a lot of time pondering the mistakes we had made at Storyland. Duhdee and I had agreed that we weren’t going back but I really thought it could be fun for Monkey if we approached it right. I finally told Duhdee that I wanted to go back. He thought I was crazy but he’s a good sport and decided to let me get my way.

The next day, after we were completely packed and ready to leave town, we stopped at Storyland. We could stay for as long or as little as he wanted. We decided that we’d go in the park and just walk around. Even if all we did was take ONE walk around the park we were going to be OK with that. After we’d been walking for a while we came upon the Carousel. We knew from experience that Monkey would like this so we got on and stayed for 6 rides! It was the perfect introduction for him. After we left that area we found a play structure with stairs and slides. Monkey spent a ½ hour playing and decompressing from the carousel. We then continued on and alternated a low key ride with an even lower key activity and we all had a great time. We spent several hours in the park that day and didn’t for a minute regret going back.

I wish with all my heart that I had the sort of “common sense” that would have told me that first day that we were approaching this all wrong but I seem to need to fail (badly) in order to learn the error of my ways. I’m so grateful that Monkey is so resilient and that he continues to love and trust me even though I clearly don’t always get it right.

This was written in 2006, about 3 weeks post diagnosis.

***

“A journey of a thousand miles begins with a single step.” – Confucius

Though, sometimes, it begins with a phone call.

Last week we received a call that freed us from weeks of worries but the call was premature. The receptionist at the pediatrician’s office calling to let us know that the test came back clear. Thank god. Monkey had been spared. Then the next day, at a routine office visit, his fill-in pediatrician casually let it slip. There were two tests done, not one. The first was clear…the second was not.

So here we are. Umma and Duhdee, parents of a beautiful, funny, bright toddler who happens to have Fragile X.

The first days and nights were a blur of terror and anxiety. We only knew what we had learned on the internet. Which is to say, just enough to terrify the bravest parent. Our normal pediatrician was on vacation but she “might” want to meet with us later. Get an evaluation for him, we were told. Here are 3 names, go ahead and call them. The actual test results are not important, they will tell us nothing. There is no way to predict his outcome. He may be severely impaired mentally, behaviorally, physically or he may not but boys are more affected than girls. Avoid the internet, it is not your friend. Any questions?

How can I respond? The tears have started, my throat is so constricted I can barely get a breath out, never mind actual words. “The internet may not be my friend, but neither are you, you cold hearted bitch,” is what I think. “Thank you,” is what passes over my lips. After the phone is back in the cradle I sit and breath and will the tears to stop flowing. I’m at work, I cannot fall apart. A minute passes, then two. The tears have stopped but I can feel them burning in my belly. I want to throw up. I want to scream. Instead I sit and continue to breath the same deep breaths I practiced in anticipation of his arrival almost two years earlier.

I meet roadblocks at every turn. Everyone agrees it is critical that we move aggressively and get his therapies started to give him the best shot of reaching his full potential. They even agree that an evaluation is key to figuring out where we stand and how to proceed. They also agree that the wait list for such evaluations are long. Very, very long. 4 months if we are lucky, most likely 6. Everyone agrees that a pediatrician who specializes in Fragile X is needed but none are taking new patients. I spend hours researching and calling only to be met with “I’m sorry” and “Unfortunately.” Devastation, frustration, helplessness…how much more can I take? I’m only a few days into my journey and I want to stop already but Monkey needs and deserves better.

Desperation leads me back to the internet. I do the searches I’m not supposed to do. I find a helpful website that does not terrify me. The amount of information is overwhelming but it’s there! I send out a cry for help. I need a starting point, a new pediatrician. Within a few minutes I’m tossed a lifeline. A calm voice at the end of the line. I’m so disturbed that at first it doesn’t register. He saw my e-mail and he’s calling to help. “What can I do?” He’s so sincere but I don’t know where to begin. It’s all too much. He guides the conversation, asking the questions he needs answers to in order to help me. The more I talk the easier it becomes. The knot in the pit of my stomach relaxes.

He knows what I’m dealing with. He knows people near me that can help. He talks me through the basic information and takes my contact information. Less than an hour later, we get a second call. This one is from a father who also has a son with Fragile X. He’s a doctor. He knows a clinic. His wife is a pediatrician. She knows pediatricians who can help.

The reality is starting to set in for Duhdee. This last week has felt so nightmarish, we keep hoping we’ll wake up and everything will be OK again. Monkey is so adorable and funny and he’s learning so many new things. He started signing “baby” and climbing stairs on his own. How can he be impaired? This has got to be some sort of cruel joke. But talking with people about it makes it real. The fear begins to swallow us again.

The next morning the pediatrician, that we’re pretty sure we’re going to fire, suggests we find another pediatrician. She doesn’t know anything about this. I’m not willing to let her off the hook that easily. We are going to need referrals and records. She will have to wait until we have an evaluation set up somewhere.

When I get to work the there is a follow-up e-mail from the father who called the night before. I thank him for his time, his efforts. He responds with a miracle. I doubt he would describe it as such but for us it was a miracle. The clinic he mentioned has an opening for next month. Instead of a 4-6 month wait we can be seen in just over 3 weeks. But we need to call quickly. It’s done. The clinic is surprised by how quickly I respond and how quickly I resolve the required registration process. I manage a small laugh, the first in a week. I am motivated, I agree.

Then another piece of good news. Monkey, Duhdee and his occupational therapist have gone to the park. She is impressed that he walked the entire distance on his own with only a few brief breaks. Most 3 year olds couldn’t do that. We’re surprised and pleased. He actually walks much farther. He can walk almost the entire 2 mile route we take the dogs on each night. Then Monkey demonstrates his new stair climbing ability. Another positive reaction from the OT. And then the coup de grace, he uses a piece of sidewalk chalk to make a mark. We’ve been trying for 7 months to get him to attempt this with crayons and he finally succeeded. Suddenly we’re reminded that while the big picture may be terrifying and send us to the depths of despair, the little triumphs resurrect us.

“A journey of a thousand miles begins with a single step.” – Confucius

Step on little man, we’re here with you cheering you on wherever this journey will take us.