The Big(ish) News

We did it!  We finally took THE test!

And we just got our results!

Guess what?! 

We're having a bab... just kidding were not having a baby.... BUT we did take a test and we did get some results back.  To be honest I think I was more nervous about this certain test and these certain results than I would have been taking a pregnancy test.  

Jared and I started our family planning journey long before we actually took any genetic tests.

I can still remember it so clearly.  The night I brought up having children with Jared.  We were recently engaged and we sat in the basement of my parents house.  I had had this conversation with guys I had previously dated and it didn't go over so well.  Deep down I was terrified of how Jared would respond or react.  I knew he wanted kids very badly.  He was obsessed with his niece and he always talked about how he couldn't wait to be a daddy.  So I was scared that I would disappoint him when I told him that I might not be able to have children.  I was worried he'd change his mind and decided he didn't want to marry me after all, even though I knew that that wouldn't be the case.  If you're anything like me then you always think of the worse possible outcome; you know high expectations reap low results and low expectations reap high results (as one of my best friends used to say).  And like I said, the conversation hadn't gone over so well with previous guys but on the other hand no guy had gotten far enough to propose so obviously Jared was special.  None the less I was scared out of my mind.  I remember turning to him and saying," Babe, what if we can't have kids?"  

At first I think he was caught of guard.  His answer was simple, "We'll be able to have kids don't worry."  But as I started crying I think he quickly realized that in fact we. might. not. be. able. to. have. kids.

Jared pulled me onto his lap as I started bawling thinking; he doesn't get it.  He thinks we can have kids just like any other normal couple.  The conversation started out simple but got complex quickly.  We started to think and talk about what it would actually mean for us to have kids.  The first topic we covered was will I physically be able to have kids?  Will my body be able to handle that?  How would my muscles be affected?  What happens if I fall while pregnant?  Will I be able to walk still and be active while pregnant?  So many questions came to mind.  My disability is a deterioration of the muscles.  What that means is the more I use them, the stronger they stay.  The less I use them, the quicker they atrophy.  I mean they will atrophy no matter what but if I use them it slows it down.  So I was worried that when/if I got pregnant that I wouldn't be able to walk as much since:

A. I'd gain weight making it harder to get around

B. If I were to fall while pregnant that could be v dangerous for baby

So most likely I'd be put on bed rest for any hypothetical pregnancy thus resulting in massive muscle loss.  Muscle loss I am not willing to lose.  

Then the next topic was

WHAT IF THE BABY HAD SPINAL MUSCULAR ATROPHY?

Many of you would think, so what if they had it?  But it's not that simple.  I have been very blessed with my certain case of SMA but others haven't been so fortunate.  Many people with SMA pass away before the age of 15.  They live on breathing tubes, feeding tubes, confined to wheelchairs, and countless surgeries.  For me (and some may not agree - let's just agree to disagree) I couldn't bring a child into this world knowing they would possibly have a life threatening disability.  I couldn't willing have a child knowing they'd face the same struggles I have faced, or struggles 100 times worse.  It's like saying I am going to have a child that I know will spend most of their life thinking why is life so hard?  Why can't I be normal?  Why don't my legs work?  

I will say that 100 percent I have loved my life.  I have been blessed beyond anything I can explain other than Heavenly Father has a certain special plan for me.  There have been nights I've cried myself to sleep because how physically hard it is for me to even shower or go to the bathroom.  Or days I come home frustrated because someone at the supermarket made some ignorant stupid comment about me being in a wheelchair.  But I love my life.  Do I wish I didn't have SMA (most of the time)?  Yes of course.  Am I grateful for who it has made me (all of the time)? YES!  

Then we started talking about our other options.  Luckily today's opportunity for a family is far more vast than it has ever been.  There adoption, surrogacy, sperm donors, egg donors, genetic alterations and even more ways to have a family!  The more we talked about it the more comforted I became knowing Jared loved me so much that he'd put having a family on the back burner knowing that there was a possibility that we would just be a forever family of 2.  He reassured me that no matter what his number one priority was keeping me healthy and safe.  That he loved me and that although he wanted a baby of our own, no matter how that baby came it would be ours.   He reminded me that our Heavenly Father has a plan that is superior than ours and that if He wanted us to have a baby He'd make sure we had that baby.  And like many other families out there, our baby might not come to us here on Earth but rather a Heavenly Family.

Once we got married we started our journey with genetic testing.  We wanted to know if we could have a baby of our very own.  We went to a genetic counselor at the University of Utah in August and we got some answers to some of our questions.  We got a genetic test order for me (to confirm I had SMA).  I thought it was silly, the idea to take a test to tell me something I already knew.  But when I was diagnosed with SMA I was only two years old and the genotyping back then wasn't quite advanced as it is now so they wanted to "double check."  After a week a little box showed up in the mail, I spit in the tube and sent it off.  Six weeks later and I got the results! 

GUESS WHAT?! 

You have SMA type 2! Surprise!  

JK.

I already knew I had SMA type 2.

Then it was time to get Jared tested.  

Here's how it works.  Here's your little science lesson for the day.  SMA is a genetic disorder.  It's passed on through genes.  What that means is since I was a carrier of SMA (obvi) I would automatically pass on my gene to our children.  That left it up to Jared and his (hot and sexy) genes.  If Jared WAS a carrier of SMA then our children would have two parents passing on the gene.  There is a 50/50 chance that our children would be affected by SMA and a 50/50 chance they wouldn't.  But if he WASN'T a carrier then our children would be carrier (since I pass on my portion of the gene) but they wouldn't be  affected.  

I sure freaking hoped Jared wasn't a carrier.  But wether or not he was, Jared was right.  The Lord has His plan.  

In January Jared went to the doctor to start the process for his genetic testing.  What should have been a quick and fairly painless process turned into a 6 month; call after call; doctors office after doctors office visits process.  

It was six months of me freaking out any time my boobs hurt (TMI - sorry) or any time I gained weight, whenever I felt over tired that I was pregnant.  I was scared that we would get pregnant without knowing our results.  If we got our results back then I could have sex without freaking out.  LOL JK BUT REALLY.  I did not want to risk getting pregnant when I didn't know if they would have my disability.  

I wanted the results soooooooooooo bad but on the other hand I was petrified of what the results might actually be. 

Jared had finally got his blood sample taken and sent off to the genetic testing company.  I had called to make sure they got his sample and they told me that they would have the results in about a week.  GULP.  A week?!  We would know in a week?!  

Three weeks went by and I had yet to call them to see what the results were.  I wanted to know and I didn't want to know.  I wanted to know if the results were good.  But if they weren't what we wanted?  Nope, they can keep the results.  

Finally one day I had decided I was going to call.  Jared was at work and I wanted to be be able surprise him (with good results) or find a way to tell him (if they were bad).

I called the doctor.  The results were in.

I asked the nurse in a trembling voice, "Hi I am just calling to get some genetic test results back for Jared Hamilton? He's my husband.  01/22/86 is his birthday.  Yeah I can hold." 

It took everything I had to not burst into tears just giving that information.

"Mrs Hamilton?"

"Yes?"  I said as the tears started coming.

"Jared is NOT a carrier of the SMA gene and all his markers look good and normal! Is there anything else I can do for you?"

That's it thats when the tears came and I immediately started praying!  All I could do was thank my Father in Heaven for knowing the desires of my heart.  Thats the news we wanted!! 

WE COULD HAVE A BABY OF OUR OWN!!!!

The tears couldn't/wouldn't stop.  I was so overwhelmed with happiness, joy, excitement, humility, joy, and happiness!  

Jared came home to find me crying  (poor guy had no idea what was wrong).  He was so concerned when he asked me what the heck was wrong.  I said, "I got the results for your genetic test."  I think he was just as scared as I was to hear what they were and I don't think it helped that I was crying uncontrollably.  

"You're not a carrier babe.  We can have a baby!"  I whispered still in shock that we got the results we wanted.  

I've NEVER seen him smile so big.  His first question, "Do you want to have a baby NOW?!"  

No I didn't want to have a baby now.  I am not quite ready for that but my heart is so full of gratitude know when we do decide to have a little baby Jared or baby Carli, that we can.  There are many more questions and precautions we will have to take but at least in theory we know we can have a healthy baby unaffected by SMA.  

WE CAN HAVE A FREAKING BABY!!!!!!

We'll make the cutest baby, right?!

Stay tuned for that baby announcement but don't hold your breath ;)