Our Future Heartbeat: Doctor's Appointment and a trip to Holland...and Italy

A lot of people have been asking how Tyley Sue's appointment went last week. I've given most people the generic answer of "it's good, nothing new though". Given the fact that so many have poured into our family through this journey with prayer and encouragement I decided to give you the low down on the appointment.

1. Her head hasn't grown anymore. It hasn't grown since she was a year and a half old. Now she's three years and 8 months old. So, this lets us know that there's not been any more brain growth since then. This also explains why her progress is painfully slow.

2. We discussed her constant activity and how it's difficult for her to be able to focus during therapy sessions, at school, at home, anywhere for that matter. If you've been around Tyley Sue much at all you know she is in constant motion. Running, jumping, clapping, flapping her arms, kicking her feet, twiddling with your shirt, jewelry, whatever she can get her hands on. At this appointment, Dr. Han even noticed how high her activity level was. So, we are looking into trying some new medications to slow her down a bit. Hopefully this will improve her ability to focus and get the most out of her therapy sessions.

Dr. Han also mentioned that it wasn't something she had previously thought much about, but the mice that she involves in her research that are missing the BDNF gene that Tyley Sue is missing, are also in constant motion. They are very hyper active. So the theory of "ADHD" may not be the case, instead the hyper activity may be a symptom of the missing gene. She's curious to see how Tyley Sue responds to the medication though and it's something she will begin to study more herself. So, there's a positive, if nothing else, Tyley Sue is in the forefront of modern medicine, making history and driving the research :)

3. I asked about one of the most worrisome things for me, potty training. Of course a year ago Dr. Han told us that this would be a possibility, but it would take longer. During this visit, Dr. Han confirmed that the other children she sees with similar deletions do not potty train until at least around age 9. These are the children that aren't on the autism spectrum (Tyley Sue is) and that aren't considered ADHD (Tyley Sue is). The children who also fall on the spectrum and are battling ADHD sometimes don't potty train until much later if ever. I'm hopeful that we will be potty trained one day, but if not, I'll just keep on changing diapers.

4. Communication was the other thing we discussed. I was curious as to how the other children with similar deletions were able to communicate. The answer was pretty much the same as the potty training; some communicate on a basic level closer to the age of 9 or 10, while others struggle even longer with their ability to communicate needs.

Overall, the prognosis hasn't changed much...I had allowed myself to become more hopeful prior to this visit about the idea of potty training and communication; however now I feel like I need to redirect my focus and rejoice on the small strides of progress we've made and realize that we will probably only make small strides at a time, with some of the major goals being very long term goals.

After this appointment I was scrolling through Facebook when I read the status of someone who was wishing that their little one, about the same age as Tyley Sue, would just ask and talk about normal things instead of some really big, adult questions. I said out loud to no one in particular,
"Yeah, well just be thankful they can talk and tell you what they are thinking or what they need." Tyler asked me what I was talking about and I explained to him what I had just read. He smiled and said, "Ashley, just remember, we are in Holland and they are in Italy. They can't possibly understand."

We say that often around here, referencing the story below...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

So, yes, on occasion when people brag about their kids, or when they do the opposite and they complain about how much they talk, or how busy they are with sports and homework, I have a moment of jealousy. Tyler is always there to remind me though that I can't compare Holland to Italy. They are both wonderful places. They both have so much to offer. They both are unique and special. They are just DIFFERENT. Luckily, God decided to let me go to Holland with Tyley Sue and Italy with Elijah. When I stop and see if from a different perspective, it's not that bad. It doesn't mean that the pain goes away completely, or that the hope for her progress goes away, it just means that I have to choose peace, contentment, and joy right where God has us. It means that God's plan for our family will cover multiple opportunities to serve Him and glorify His name between Holland and Italy.