First off, I want to thank Lindsey for taking the initiative to start this awesome blog. I hope that our family and friends will check in on the blog now and again and make comments. I cherish the family and friends that we have even though I don't show it enough! So, THANKS to everyone who has supported our family throughout our lives, but more recently in regards to the first days we found out about our wonderful son Jaxon and his newly diagnosed condition.

It is impossible to explain what it is like to find out your child wasn't the healthy, normal, perfect little child you thought he was at his 2 week check-up. I will never forget a single word the doctor spoke to us that day. I've always been able to think or work my way out of any problem that I was involved in. I still very much have that mentality with Jax. We will work with him and give him everything we can. However, at the end of the day, there is no "cure" for Williams Syndrome. Right now there is a mixed bag of emotions. He is incredibly cute, social and shows good development. For that I am extremely grateful! However, on occasion I am overwhelmed by his future. I worry for his little heart and body and I worry for his mental/developmental progression. Although I do have great concern for Jaxon and his present and future well-being, I am largely positive about not only Jaxon's life, but our family as a whole.

Lindsey and I have overcome much, in fact, there are several of you who still owe me money on betting we wouldn't make it past our first year of marriage (12 year anniversary in July). I feel that Lindsey and I can overcome anything together and I believe some day we will look at our experience with Jaxon and be grateful for the opportunity to raise a child with special needs. I am also confident he has much to give and teach us. He has already taught me many things, with the most important being unconditional love. So far he has been nothing but pure love and satisfaction for me. If I am ever feeling down about his condition or problems he is having I just need to hold and/or visit with him and my mood completely changes. Anyone who has interacted with him knows that he has that impact on people. I have no doubt that his infectious smile and cuteness will overcome anyone that meets him throughout his life.

Well, I have probably bored anyone reading this to death. I am almost done. I just want to let Lindsey and the girls know how much I love them . It can be easy to focus too much on a child with special needs and leave the other children behind. I vow not to do that. They are so incredible and they help around the house and with Jaxon so much. I know that God has blessed my family and I greatly and I could never repay him for what he has done for us. Again, thanks to everyone who has helped our family throughout the years and don't be shy with your comments. We are going to continue to need everyone's support!

Another school year come and gone

I can't believe it is almost summertime again. I know how cliche it sounds to say that it seems like it was just yesterday.... and yet it does.
My little baby girl who is no longer a baby will be going into Kindergarten, my middle in 4th while my oldest baby will be in junior high. Aghhh! Where did the time go?
This is going to sound awful but I practically (or maybe actually) jumped up and down on Kiley's and Haley's 1st days of Kindergarten, but the thought of Emery's 1st day brings tears to my eyes already. I hope this has less to do with favorites than it does with my own maturity and growth as a mother. I think I tend to take less things for granted than I once did and I understand the importance of time. I won't lie and say that there aren't those moments and sometimes days that I long for the constant tattling and screaming to stop or the "mom, mom, mom" said repeatedly in my ear to go away, but I also try to appreciate the here and now.

Good Analogy

Welcome to Holland (aka the beauty of Holland)
by Emily Perl Kingsley

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 guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, 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 flight attendant 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 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. 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 go away, because the loss of that dream is a 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 where do we go from here?

Well, honestly we don't know yet. We do know that because of his aortic stenosis that he will continue to be monitered 2-3 times a year to make sure that it is not progressing more. Chances are though that it will and he will have to have heart surgery to repair it. His next ekg is in June. I think that it will be more advanced than it was the first time. He now sweats often when I nurse him.
We continue to read material online and have talked with another family who's 1 year old daughter has Williams. Some times I get encouraged by what I hear and see and sometimes it is difficult to picture our future.
Right now we have no choice but to wait and see what Jaxon's capabilities will be. Will he function on the low or the high side of the spectrum? I take encouragement from the early intervention that we will be able to work with him during some of the critical developmental stages and that it might make a difference in his outcome.
Alex and I decided that we weren't going to put limits on his capabilities. We will let Jax show us what he can and can't do. If we went into this with preconceived notions than that's all he would ever be. Internet articles and other peoples experiences.
We hope to do the best for our little guy. We know the road will be bumpy but the journey will be worth it.

Jaxon Baby

Well, I thought I would start this blog to update people on our cute family, but also as a resource to keep track of our progress with Jaxon. This is probably mostly going to be for Alex and I to be able to get our thoughts out and to help us remember certain things, but I hope that it may become a resource for other families dealing with this diagnosis.
Jaxon was born October 18th 2007. Our first baby boy. We were over the moon with excitement. He weighed 6pounds 15ounces and was 19 1/2 inches long. He was the littlest of our 4 babies. I remember my mom commenting on how wide his mouth was. We went home and everything was wonderful. He had the cutest little hoarse cry. He had creases under his eyes and they would bulge a little when he cried, but that is just because he was a newborn and swollen right?
Fast forward to the 2 week baby check-up. All is well and then my husband happens to ask the doctor if he thinks his bone structure around the eyes is okay. (because of the bulging) The doctor feels and puts us at ease that it is fine and then he says... "as long as we have all noticed that something is off in his appearance, let me get a book and show you what I think it might be."
Then he left the room to get his book. He was gone for probably 10 minutes and at first we were still fine until it sank in that he was getting a medical book to show us what our baby might have. I turned to Alex and said this is not good.
When he came back in with the book he started reading us the characteristics of Williams Syndrome and I immediately began to cry. He said he would give us a few minutes alone to look over the few pages in this book. My attention immediately went to a picture that although not as cute, looked a lot like my little guy, and then I saw one of the characteristics was a hoarse voice.
Well, this is the part where I tell about our amazing family. When I left the hospital my dad happened to call. I of course was still crying and tried to tell him what the doctor said. He then had my mom call me. My mom was at a doctor appointment with her dad. My aunt was also there. So as I am telling my mom what little I know about Williams Syndrome, my aunt is on the phone to my uncle who is doing an internet search about it. We got home and my mom showed up, and 2 of my aunts, one with dinner. I always liked having so many family members near us, but it was in this moment that I realized the true blessing of it.
We went the next day to Primary Children's to have a blood test done. This would take 8 days to get the results. A few days later we met with a geneticist who checked him over. By this time we had done a significant amount of internet searching and reading and was fairly familiar with the characteristics. One of them was a wide mouth (check), one of them was that they tend to be on the small side of things and probably would be smaller than other siblings (check), and we already established the hoarse voice. Well at the end of the meeting he told us he wasn't positive that he had it and would put his guess around 60-70 percent sure.
All we could do at this point is go home and wait 2 more days for his call.
Friday rolled around and Alex had to work. I didn't want to be alone when I got the call so I asked my mom to come and stay with me. Minutes seemed to drag by and every time the phone rang my heart would drop. Finally I couldn't take it anymore so I called and left a message with the geneticist to please get back with me. He called back a few minutes later and confirmed the diagnosis. I was devastated. How could I call Alex at work and tell him that his little boy was not going to be the little boy that he had dreamed about. I felt awful having to tell him at work. He was all alone, I was lucky enough to have my children, mom and sister with me. So, I called him. I don't think I really even said much, but I didn't have to. The sobbing said everything. I decided to get the kids in the car and drive to his work so we could be together for a little while.
For the next few weeks, I would just start crying, anywhere, the grocery store, in the car, on the phone while paying bills. It got to the point where every time I had a little sniffle my 4 year old would say " baby again mom?"
It has now been 6 months since the diagnosis. I would say that most days are good ones. We have been blessed with this beautiful amazing boy who is love. That's the best way I can describe him. He is often grouchy and won't let you get away with setting him down, but he has this amazing spirit and feeling that accompanies him. You can't be sad about him when he wraps his little fingers around yours or when you look into his stunning blue eyes. He is LOVE.
I know that often times parents of children with different disabilities or syndromes say that they wouldn't change them for the world. I'm not sure that I am to that point yet. If I could have my Jaxon and give him his 20 missing genes(out of 30,000) I think I would. I do however know that this little angel who is now squirming around on my lap is going to be an extraordinary blessing to our family and to anyone with whom he comes in contact. We all will be better people for knowing Jax.
Children with Williams Syndrome often times aren't diagnosed until between 1 and 2 years of age. We are lucky that Alex mentioned the eyes to our doctor because although he had his suspicions about it he wouldn't have said anything until he noticed some delays in his development six months to a year later. Knowing early has allowed us to familiarize ourselves with what we can expect and to get him proper care. He had an ekg when he was 1 month old and has mild aortic stenosis (thickening and narrowing of the aortic valve) We meet once a month with a therapist who will work with him and try to help him meet milestones at an average time. So, all in all we are lucky for the early diagnosis and the chance to give our baby the best start possible.