Full Disclosure

Lately I've been feeling the need to talk more about Daniel's diagnosis and to gain support (if there is any) from others.

The problem is that it really doesn't come up in the general everyday conversation and I can't just blurt out to people, "Hi, it is cold out today, my son has Lisscencephaly, how are you?" Right, that wouldn't sound good now would it?

I think about the reaction that may be received too. The three types of reactions I may encounter. With the first being the extreme amount of pity that may be displayed. Then there would be the confused, "why are you telling me this in the first place?" look; and then finally the "okay how do I respond to this in a friendly but please do not tell me anymore way?" So, why would I bother in the first place?

I never want Daniel to be defined by his diagnosis but I also don't want for him to be singled out because of it. I want to educate people. I want people to understand what this disease is and how it affects not just us, but others like us. I do not want to scare others but I feel it is my responsibility to explain what this is to others who have no clue that it even exists.

What is the right way?

When Daniel was first diagnosed a good friend of mine told me to check out this blog. The writer of this blog has a daughter with a version of what Daniel has, though has very different symptoms and concerns. He has written a book that will be coming out next year and really hits home with a lot of things he talks about on his blog.

He recently wrote about being the new nomads here, and I can truly identify with his view. In one of his recent posts he wrote a fine line and I will quote: "But even in the very best of times (and these are surely the best so far), something lurks. It watches my daughter in all her triumphs and all her positivity and her tenacity, but it watches her with cold eyes...I am reminded once again that Schuyler's monster isn't cute, and it isn't a literary device. It's a motherfucker, and a patient one."

A Choking Hazard

If you've heard about this then you can understand how mad I am. We don't even have this product but it still infuriates me. I mean who in their right mind would even think that this is okay for little children to play with? What, do they think that small children do not swallow small things? I am really appalled by the amount of toys that are out there these days that are unsafe for our children. Like I don't have enough to worry about that I have to worry that something I buy for a present for my children or family or friend's children is going to be recalled in a month or worse!

Alright, off my soapbox for now. We had a slight scare last night--well I was scared. Daniel was having a teething biscuit and bit off more then he could chew. Well, he made it mushy enough to swallow more than he could handle. He really does not do well with bits of food that are bigger then the head of a pin. So we had to scrape it out of his mouth. It wasn't very terrible. He didn't lose consciousness, he didn't stop breathing, he only had a scared look on his face and had a hard time bringing up or swallowing what was stuck in his throat. Poor boy. Uh, I really hate not being able to let him have ordinary things that other one year old's can have. Especially being the dietitian that I am, I am always aware of what stage he could be in with eating but is not. There I go comparing again.

However, to keep us upbeat Daniel continues to make us laugh and he continues to make strides in his therapy everyday. He plays ball by rolling it back to you. He is working hard at standing (with assistance) and is really getting much better at rocking on his hands and knees (the beginnings of crawling). He is amazing. He is wonderful and my two beautiful children and my wonderful loving husband (aside from the Bruce Springsteen fiasco) are all that I am thankful for in the upcoming holiday that came too fast.

It's the little things

I was shocked the other day at the realization that Thanksgiving is a mere 2 weeks away. I am not prepared. Not that I will be hosting the event but still, it was just Halloween people! Time just flies.

We will be going to my sister-in-law's house to cook and eat until our hearts content (and until I've gained back the nearly 9 pounds I've lost). My sister-in-law (Jason's sister) like us has two kids and like us has a girl and a boy in that order. The cousins are pretty close in age too which is nice. Alison thoroughly enjoys playing with her cousin and the boys, well lets just say that they will enjoy playing with each other too when they get older.

It will be difficult for me to see them together, knowing that my nephew who is 5 months younger then Daniel can crawl and pull himself up. Don't get me wrong at all, I will be happy to see him and enjoy the time with all of them but as much as everyone says "don't compare," it is still hard not to.

And then I wonder about Daniel--how much does he know? He is almost 15 months old now. Does he see other kids walking around? Does he know that he is not like other kids? How much can he decipher?

But again I need to focus on Daniel and his progress and honestly he is doing beautifully as usual. I know that he will crawl but I also know that he needs to accomplish other things first. Because in order to crawl there are other little steps that he must master. He is getting there.

This week Daniel has done a lot of little things that all add up. He continues to give high fives if you ask him, he will "clap" when asked to. He will also reach out and (surprising himself) turn a toy in such a way to make a sound or light up. He really did not know he could do that. It's funny because the louder and brighter the toy is, the better it is for Daniel--and the parents just have to deal. But it's great. It's great to see him more and more interacting with his world. It's great to see him laugh and realize what he can do with his hands. He is learning and I know that he is working up to the bigger things like crawling. But for now I enjoy those little things--when you think about it though, those are still pretty big.

Making connections

Lara and I received an email from a Massachusetts woman who came across our blog. (Apparently, if you Google "lissencephaly blog," ours comes up toward the top of the results.)

She wanted to let us know about her 18-month-old daughter, Katie. Like Daniel, Katie has been diagnosed with a mild form of lissencephaly. And like Daniel, Katie has been making developmental achievements.

Katie's mom had many kind words of encouragement for us and identified readily with the inherent isolation that we sometimes feel in dealing with this rare condition. Her message was a pleasant reminder that there are other parents who are coping with similar challenges.

But perhaps the happiest part of this exchange was the sharing of some recent photos of Katie, which show her crawling, grabbing, climbing and engaging her older sister. Daniel hasn't reached this level yet, but Katie's progress certainly fuels our optimism.



(Used with permission of Katie's parents)

For A Reason

I believe that everything happens for a reason. Good or bad.

I believe this because certain circumstances in my life have proved it to be true.

When the decision came to move to NC it was the scariest decision I ever faced. Having never been out of NJ before, I had no idea how to leave. Also, the thought of leaving my family was even more scary.

We moved to NC with one job (Jason's) and a 4 month old daughter. Unbeknown to me, I also had severe postpartum depression. When at first we moved, Jason had already had his first bout of pneumonia in NJ and we chalked it up to just being in NJ. Jason would then proceed to have two more bouts of pneumonia and a doctor in NC said this is not normal. He was then diagnosed to have a tumor in his lung that needed to be removed. A very frightening time for all of us. At the time of Jason's operation I was at the lowest point in my depression and thoughts of suicide rang through my head daily. Luckily we both got through that tough time and moved on.

We moved here to Harrisonburg on a wing and a prayer, and with a lot of debt. Jason had gotten the job he had wished for in grad school, and I was more than happy to leave my job in NC. We had NO idea what VA would bring us, but we were okay with that.

Here is where Daniel received the diagnosis of mild lissencephaly. Here is where I am less stressed and happier than I've been in a while. All of our problems have not gone away, they have even grown some, but to have made the decision to leave our friends and familiarity in NC and come here to VA was for the best I believe. I also believe that in the future whatever decisions we make no matter how difficult they may be, will also be for a reason. Whatever reason that is, only time will tell.

Even Daniel's diagnosis is for a reason--to teach me that the most important thing in life is to take one day at a time with the ones you love the most.

A post for big sister

Although we created this blog primarily for Daniel, I wanted to share a recent report that we got from Alison's preschool teacher. Each week, Mrs. Rooney types up a brief weekly summary for us, highlighting Alison's experiences in the classroom.

Below is an excerpt from Mrs. Rooney's latest report. It made us laugh out loud. Hope you enjoy it too.

Alison really enjoyed being in the loft room this week. Riesling, Bethany and Alison directed dancing shows several days this week. Alison was the host and introduced the performers and also notified the audience (and there were chairs set up for them to sit in) when the show was over. Alison gave each audience member a flower to throw on the stage at the conclusion of the performance and a camera to take pictures throughout the show...