Wednesday, January 16, 2013

It's been a week.

This week has been filled with so many different emotions.  I have done a whole lotta reading, a whole lotta phone calls to therapists and getting in contact with local Fragile X support groups. Oh yeah..and some crying.  We have received so much love from family and friends this past week.  I can't say how much it has encouraged and uplifted us.  To know that we have so many people supporting us and praying for us makes all the difference in the world.  I know there will be peaks and valleys but I have such a calm spirit about it. 

I talked to Liam's soon to be Applied Behavior Therapist (ABA) and I am super excited to get started.  She's coming over to the house on Wednesday to do her initial evaluation. I have heard nothing but good things about this therapy.  ABA therapy is usually targeted to kiddos with Autism but Liam will benefit from it as well.  

The ABA Therapist is also putting in a referral for us to a very highly rated speech therapist who uses a unique teaching tools method.  Honestly, I got all sorts of excited about it.  We are willing to do whatever it takes to get Liam what he needs.  Even if we have therapy five days a be it.  

Be strong and take heart, all you who hope in the LORD. Psalm 31:24

An oldy but a goody.  Too cute. 

Saturday, January 12, 2013

Our plane has landed...and here we must stay.

So many many things going through my mind these last couple days.  Life is so crazy and always has a way of shaking you up a bit. I've been going back and forth about lots of things and am still pretty raw and fragile when it comes to this. I guess it's just hard to except some things that happen. All we can do is embrace the change and move forward, even now when so many things are uncertain.  And so a new adventure starts for us. On Thursday we found out that our little precious Liam has Fragile X. For those of you who do not know, Fragile X is the most common form of inherited intellectual disability in boys. Phew, Okay, I got it out.  It's going to take some getting used to saying that.  My son has a disability. My heart aches every time I say it. 

They drew my blood at the genetics office because the doctor is quite certain that I passed the gene to Liam.  Another crushing blow.  The fact that I can pass this gene to future children if we decide to have them...BAM...and another crushing blow! 

Questions, will Liam talk? Will he talk? Will Liam play sports? Will Liam have a family of his own? These are all unknown. 

We are not sure what God has in store for Liam.  Liam will have all the therapy and love he needs to live a very happy childhood. Liam has a mommy and daddy who love him dearly and grandmas and papas and aunties who love him too. We know we will all face challenges but what else is there to do but lean fully on God. He knew our Liam before he was even born. 

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
 Psalm 139: 13-16 

Words of encouragement from one of my favorite chapters in the Bible. 

Now I am focusing on learning everything I can about Fragile X and getting plugged into communities to get that extra support that I know we will need. 

Never in a million years did I ever see this as part of mine and John's and Liam's life.  But, we are a family...a happy family. Life has thrown us a curve ball but gosh we sure do have  a lot to be grateful for.  

Most of all, I'm grateful for the never ending, never changing love of Jesus. 

I'll leave you for now with some pictures of our angel and a song.

Wednesday, January 9, 2013

When you've done all that you can do...

Well, there was a cancellation at the genetics office so me and Liam will making a trip up to Austin in the morning. We are appointment number one! Thank God because another week and a day of wondering would have surely killed me. Not really.

As terrible and this is, tomorrow...we get answers. Answers we've been wanting for a long time.

When you've done all you can do He'll take it from me. I'm handing over the doubt and the worry. Everything I'll ever need I'll find in Him.
He died a death He didn't deserve to give me life in return.

Saturday, January 5, 2013

Our adventure in Holland.

As a little girl, it is only normal to think of your future as a wife and a mother.  It's something most girls dream about.  The day meet the man of your dreams...the man who you are certain will be the father of your children. You get married and start talking about starting a family.  Not sure about you but for some reason I always wanted four boys.  Why..? I have no idea.  It's just what I wanted at the time.  

I remember the day me and John found out that we were going to have a baby.  The best day EVER.  It was so exciting.  A little miracle inside me. Our precious baby Liam. He has changed mine and John's life in a way we never thought was possible.  Babies have a tendency to do that. Life as we knew it was changed...for the better.  Our lives have purpose and we could never imagine our lives without him in it. 

As you may know, Liam has been faced with some challenges and we have been on the hunt for the cause.  We recently took Liam to get genetic testing done up in Austin just a few weeks back. They said that the results would take six to eight weeks.  Well, the nurse called me two days ago. What I wanted to hear was that everything is okay..that they  didn't find anything in the test results.  What I did not want to hear was that we need to schedule an appointment for you to come and discuss the results with the doctor.  I honestly did not think that anything would show up in the results...but something did.  So now we wait.  Yes, they scheduled us to see Liam's doctor in TWO WEEKS!! Why in the world would a nurse call and tell any parent that something is wrong with your child but you have to wait two weeks until you know exactly what it is.  It is going to be a LONG two weeks to say the least. Lots of wondering about what it could be. Lots of questioning.worrying.praying. 

A couple months ago I had the honor a sharing in a Bible study with a wonderful group of women (you know who you are).  The book we read and studied was called, The Power of a Positive Mom.  There was one chapter in particular that touched me now more than ever. The chapter talked about the challenges we face in life and that the problems we are facing in life right now will only make us stronger, spiritually.  Not that we are not going to questions God as to why these things happen.  Of course we will, we are only human. The author, Carol Ladd says that "we can use this experience in our lives to polish us and perfect us and allow Him to complete the work he has started in our lives". That is the only choice we have.  To rely on God and trust that his will is good and pure and perfect and that He will never leave us or forsake us. 

There is a section in the book that really sheds light on what it is like to have a child who experiences delays or a disability of some sort.  It touches me deeply every time I read it and helps me to realize that although Liam has some things going on and that things haven't turned out exactly as we planned that everything will be okay...the scenery is just a little different.  Originally posted from Chicken Soup for the Mother's Soul, Emily Kingsley talks about an approach to adversity is such a great way in what she calls, "Welcome To Holland".  

     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 wonderful plans. The Colosseum. 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 you 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. 

     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 t a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. 

     So you must go out and but new guidebooks, And you must learn a whole new language. And you will meet a whole new group of people you would never of 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, 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 are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, yes, that was where I was suppose 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 the rest of your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very loving things....about Holland. 

So really...I want to invite all of you on our journey through Holland.  Meet us there...pray for us.  Liam is still the same sweet precious Liam.  I will update you all once we meet with Liam's doctor. Love you all. 

    For every hill I've had to climb,
For every stone that bruised my feet,
For all the blood and sweat and grime,
For blinding storms and burning heat,
My hearts sings, but a grateful song-
These were the things that made me strong!