Thursday, January 27, 2011

Welcome to Holland

I'm drinking tea today, rather than coffee. Shocked? Me too!

I wasn't too sure about this whole blogging thing. Until yesterday when I had somebody mention she couldn't wait to read my next post. Everybody second guesses themselves, so having that response to my blog, my thoughts typed up and put out there for the world to read, was very encouraging. Thank you, you know who you are! :)

With my last entry, we had just been given the life-changing news. Our son tested positive for Fragile X Syndrome. So we have the answer we've been looking for. Now what?

Well now we have to figure out what this new, foreign title even means. Fragile X Syndrome. First thing I did was google it. Then I thought no, nothing good ever comes from googling anything medical. I didn't look at any of the sites listed. Instead, I went to The National Fragile X Foundation's website, which was recommended by one of Logan's therapists. Here is what I learned:

Fragile X syndrome is the most common inherited cause of mental impairment. The syndrome occurs in approximately 1 in 3600 males and 1 in 4000 to 6000 females.
Impact on males
The majority of males with fragile X syndrome will have a significant intellectual disability. The spectrum ranges from learning disabilities to severe mental retardation and autism.*


Basically, fragile x is a mental and physical impairment. This information was obviously very hard to swallow. We had a meeting with the doctor who had originally ordered the test for this, and he explained as much as he could, but we could tell he didn't know THAT much about this syndrome. He referred us to the fragile x clinic, which had a waiting list of 3 months for appointments. Great. *sarcastic eye roll*

In the meantime, I was turning to family and friends to help me adjust to this news that I would have a "special" child that may need help his whole life. He will most likely be in special education in school, and will be in therapy up until that point. This wasn't just a temporary little "push" that he needed after all. It was very, very hard for me and Michael to accept. We decided that the best way to accept this was to arm ourselves with knowledge and be prepared for whatever the future may hold. 

I received something from my sister, who was trying to help me see the positive side to all of this news. I have gone back and read this several times throughout this past year, and everytime it puts me back on track. I don't need to sit and think about the things we'll be missing out on, instead I can dream about all the things we will get to experience with our son. I am hoping this will help somebody else as much as it helps me:

* Welcome to Holland *

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.

Emily Perl Kingsley  1987

I will end this entry on that note, and I'm hoping to be able to catch this blog up to be real time. Every day is still a new experience, and we are still constantly learning about this brand new (to us) syndrome and lifestyle.

Friday, January 21, 2011

The Journey Continues

Hmm. I'm sitting with my laptop in my lap, a cup of coffee sitting next to me, and the sound of Logan settling down for his nap while I read my previous blog. I am somewhat of a perfectionist and could edit the blog all day long, but instead I am reading it as if it's somebody else's entry. Reading it in this way, I don't care what grammar errors there may be or if there are run-on sentences (which I'm the queen of!). Instead the words are sinking in and affecting me and making me anxious for the next entry! It brings me back to the days of wondering why. Why is my perfect son Logan, not quite doing what he's supposed to do? Hmmm. It's heart-breaking to read, but encouraging to realize how far we really have come with him.

Yesterday's entry left off with Logan cruising around the living room, but not letting go and taking that anxiously awaited first step. Shortly after his evaluation with the children's therapy center, Logan turns 18 months old, and is holding onto the overstuffed chair in our living room watching me as I sit on the floor with his favorite book. He suddenly gets a big smile on his face, lets go of the chair, and walks right over to Mommy! I was so excited! I couldn't believe Logan has finally taken his first steps! I gave Logan the biggest bear hug ever and sent him on his way back to the chair to try again. When Daddy gets home, we get it on video that Logan will walk from Mommy to Daddy, on those chubby, wobbly lil legs of his. I could barely watch the video because my eyes were so filled with tears of joy. I can't even explain how proud of him I was at that moment.

Logan continues to make progress with the help of the therapists, and of course the help of Mommy & Daddy, and grandparents, and aunties. He is surrounded by people who just adore him and he is spoiled with attention and affection! We celebrate every single thing he learns and continue to have patience in the things he struggles with. In the back of my mind though, is that annoying word: WHY?

Logan turns 2 in the summer of 2010. He gets a big, fun, Dr. Seuss themed birthday party. Mommy chose Dr. Seuss because Logan's favorite toy in the whole world is a good book! He has lots of friends and family at his party, and he gets to eat some yummy cake! When it's time to open the presents Logan is very overwhelmed though, with all the people watching him and clapping for the new toys he receives. He is miserable and ends up wanting to just cuddle with Mommy for a little bit after everyone leaves.

A little more than 2 weeks after Logan's birthday party, on August 17, 2010 I receive a phone call from a doctor we had taken Logan to at the end of July. The doctor had drawn some blood to send for testing, because we were all still trying to figure out why Logan needed these therapies and extra help. When my phone rang, I was in the car with Michael and Logan and was slightly distracted when I answered. The doctor said he received the results back from the blood test, and had some news. I tuned everything else out except for the words the doctor were saying now. I expected him to say they hadn't found anything, but I will never, EVER forget the words he said instead. He said Logan tested positive for something called Fragile X Syndrome. Hmmm. I thought back to my late nights of surfing the internet for answers, and vaguely remember running across info on Fragile X. I remember I had quickly dismissed it, as it said it was a genetic syndrome, and we didn't have any family history of it. I was confused. "How could he have Fragile X if it doesn't run in the family?" I asked the doctor. He said "Well, I'm not sure but I would like you to come have your blood tested." "Why me?" I ask him. He says that since Logan is a boy, and this syndrome is a mutation of the x-chromosome, it could have only come from me. The father doesn't pass an x-chromosome to a boy, only the mom does. Wow. Was all I could say. I was in shock that we had actually gotten an answer to my constant WHY? But now I wasn't so sure I wanted the answer afterall. Michael and I try looking up what we can about this strange new word: Fragile X Syndrome. We're not at home though, and using our cell phones proves to be more frustrating than anything else. We decide to go to the local library and just check out some books on it.

We realize just how difficult it's going to be find out about Fragile X Syndrome when the only 2 books the library carries about this syndrome were checked out and never returned 4 years ago. I was shocked. "You mean nobody else has asked about these books in 4 years?" I ask the librarian. "No, sorry we'll just order some new ones for you guys." Hmmm. No wonder I've never really heard of this. It seems nobody else in the world really has either.

Little did I know how much these words "Fragile X Syndrome" were going to affect not only Logan's and Mommy & Daddy's life, but the lives of our entire extended families as well....

Thursday, January 20, 2011

A New Chapter in LIFE

I decided to jump on the blogging bandwagon. I love to write, but for some reason can never force myself to sit down and write in a journal. With everything upside down in my life right now, I figured it's as good a time as any to start!

My name is Melanie. I am 28, a virgo, a mom, a sister, a daughter, a best friend, a significant other. I came from a large family, and as rare as it is these days, my parents are still together, still married. They had 4 of us children, 2 boys, then me, then another girl. Perfect family I'd say. I'd say that because I love "large" families. I always planned that I would have 3 children of my own and that my first would be at age 25. Well... so far I'm on track.

December 15, 2007 Michael and I had a pregnancy test show POSITIVE. I was so happy and nervous and everything else a pregnant, hormonal woman would feel ;). Life was going according to plan, I'm 25 and pregnant with my first! 

We found out via ultrasound on 3/20/2008 that the baby was a boy! We already had the name Logan Michael picked out. For some reason we both agreed right away on Logan, and Michael is Daddy's name. So the rest of the pregnancy goes as planned, and on 8/1/08 I gave birth to a healthy, 9 lbs 2 oz baby boy. Love at first sight!

His first year of life is full of exciting firsts, sleepless nights, and tons of diaper changes. He is THE sweetest, most handsome, happiest little boy I'd ever met. Sure every mom might say that, but it was really true with Logan! :)

Logan's 12 month checkup goes smoothly, except that he had to get the dreaded SHOTS. On the way to the doctor, with Logan babbling away in the backseat "mamamamama" and blowing raspberries, Michael and I are reflecting back on the past year, and how much of a pure joy our son is. When we open the sliding door of the minivan, Logan as always smiles from ear to ear and babbles "adada!" Cutest. Thing. Ever.

Logan gets his shots and life goes on. He has his first birthday party, and he is cruising EVERYWHERE. He just won't let go of that couch yet though. He has had a couple ear infections at this point, and a week after his 1st birthday party we have to take him to get tubes in his ears. It was very, VERY, sad seeing how upset Logan was when he woke up from surgery, but according to the doc, everything went smoothly. He recovers, and for awhile he has no more ear infections.

A few more months go by, and for some reason Logan STILL isn't letting go of that couch to walk on his own. I start doing some research, and find that a lot of times boys are slower with milestones than girls, and the "normal" walking age can be all the way up to 18 months. Okay, I can handle that. We continue working with him, and he continues smiling and laughing at everything we do. He's a good sleeper, a good eater, no tantrums, just an overall EASY child. We are more in love with him than ever. 

Then, Logan has his 15 month checkup. I express my concerns to his doctor about Logan not walking, and for some reason he doesn't tell me "Oh it's fine, every child is different" like I was expecting him to say. Instead, he asks if Logan is babbling or saying any words. Michael and I both say at the same time "Well, not anymore". We had remembered back to when we would open the slider door on the minivan and Logan's face would light up as he babbled "adada!" We realize he hasn't done this for a couple months now. The doctor isn't very happy to hear that news. He gently tells us that Logan should probably get an evaluation at the local children's therapy center. I can't even THINK about holding back tears at this point. Why would he need an evaluation? What did we do wrong? Did I do something I wasn't supposed to do when I pregnant? Eat too much fish or not take enough vitamins?! Was I too stressed during my pregnancy by working full-time and sometimes even overtime? HUNDREDS of questions and fears flooded our minds. Unfortunately, the doctor couldn't answer any of these questions. 

We went home, made the appointment for the evaluation, and worried while we waited. I kept hoping Logan would suddenly start walking across the room, come up to me and say "Hi mom! See, I'm fine!". But, no such luck. We take him to the evaluation and they tell us he is delayed in all areas, and does in fact qualify for OT/PT and Speech Therapy. I ask them what any other mom would ask: why? They simply say they don't know. "It could be nothing!" they say. "He may just need a little push". Okay. Just a push. So I sign him up for all the therapy sessions they suggest and wait for them to give him the little push he needed. And yet he continues to still need a push month after month. I love my son with all my heart and soul, and love him more than ever before, but at this point one word is constantly swirling around in my head: WHY?!

Why does my son need therapy that other people's kids don't need? Not just one therapy, but two. And they suggested a home teacher as well, that I refused. I don't need someone coming into MY home telling me how to "push" my son to do better when I'm his mom, I'm taking him to his therapies, I know that he's going to be JUST FINE!

Little did I know, that therapy sessions, therapists, and home teachers were going to become a MAJOR part of our lives.
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