Hope in Many Forms

Our son Jayden at almost 15 months old 3/20/11

 

I cannot express the gratitude I have for the unbelievable outpouring of support we have received.  From families who have experienced similar things, to parents and siblings of children with disabilities, everyone has given wisdom, encouragement and advice.  I posted “My First Thoughts” on the birth forum I participate on (babycenter.com-Shout out: May 2011 is the BEST group EVER!! lol) and the amazing amount of support was just astounding!  People have contacted me on Facebook, called me, or stopped by to just pour love, support and encouragement on us.  I KNOW people are praying for us and I cannot believe the peace I feel.

I still cry sometimes.  It’s still hard for me to grasp that the term “mentally disabled” or “mentally challenged” would scribe my child.  But every time a thought like this slips into my mind, I cry if I need to and run to God with it.  He has, each and every time, shown me ways my son’s life will be beautiful.

Some people have encouraged us with Scripture.  Some have been “brutally honest” about how hard it will be sometimes but still encouraged me to endure and see the joys it will also bring.  Some have given specific advice about legal rights to brush up on, things to look for in a pediatrician, people to contact and talk to and organizations to join.  Strangers have told me that I have already inspired them and friends have pointed out my strengths and stated their faith in my ability to do this.  I cannot tell you how much those mean to me.

I wanted to address one comment though that I’ve received a few times.  I’ve had a few people say that they had a cousin of a friend or a friend of a friend or a distant relative who was told by the doctors that their child would have Down’s and their baby was born perfectly normal.  I have not, however been able to find out from anyone if they were told this after amniocentesis or blood work or an ultrasound.  And PLEASE know that I am not saying I don’t want to hear comments like this.  I do.  I welcome all the encouragements people have sent our way!!!

I could be remembering this wrong, but I believe what the geneticist told us was that the blood work you have done early in pregnancy only tells you what percent CHANCE you have of having a baby with Down’s and it’s only about 80% accurate.  So a 55% chance that is only accurate 80% of the time is not what I would consider reliable…or helpful even.

It also includes your age in the calculation which seems odd to me.  Many people (including many doctors I’ve seen) say that women over 40 have a higher chance of having a baby with Down’s.  But the average age of a Mother when she has a baby with Down’s is 26.  The idea that women over 40 have a higher risk comes from the fact that the percentage is higher in that category simply because less women over 40 have babies.  Not only that, but it’s really just a hypothesis at this point that the age of the egg contributes to the likely hood of an extra chromosome.

Ultrasounds are notoriously unreliable.  I can’t count the number of stories I’ve heard about people being told the wrong sex of the baby or the wrong weight based on an ultrasound.

But amniocentesis is 99.9% accurate.  Either the extra chromosome is there in the cells or it’s not.  There’s really no other way around it.  I’m not saying this to diminish hope or to say that people shouldn’t pray that a miraculous healing would be true for us.  But I would like to explain why I don’t think this is in the plan for us.

From the moment we found out our baby has Down’s God has been with me, encouraging me and answering my cries.  He has not been saying “I will heal your son”.  He has been saying, “Here is why I chose you to care for this very special life” and “Here is how I have already prepared you”.  God has been showing me things about myself, my husband, our first son Jayden, and both of our families that make us the PERFECT group for this amazing gift!

I wish I could share them all with you but He has been showering me with praise and encouragement for four days now.  It would take a while to type!

Another reason I feel at peace is that God had already told me he has a plan for this guy.

Around 20 weeks gestation, when we found out it was a boy, I was actually mad.  I was mad that I was pregnant again before I even knew if, or when, I would have another child.  I was now even more mad because I really wanted a girl and I kind of thought I deserved, “for once”, to get what I wanted, especially after the very rough year I had been having.  I told God I knew I was acting like a spoiled brat, stomping and shaking my head, but I couldn’t let go of how badly I had wanted a girl.  God told me “This is not about YOU!  This boy’s life has a plan.  I have brought him here, to you, at this time, so that he will be where and when I want him, to do the things I have planned for him and to impact the lives I will bring his way”.  How funny that I found that comforting, but I did.  Sometimes God tells me to just suck it up and trust Him lol.

So when I was told my son would have Down syndrome, I was sad and shocked but already knew, I mean KNEW, that God had planned this, expected it, and even prepared me for it.

Now, it’s possible I could be wrong (it’s happened once or twice lol) about whether or not God will heal my son’s Down syndrome.  There is really no way anyone can predict the future or what God has in store for any of us.  And if God has put on your heart for you to pray for a miraculous healing then you should, PLEASE, continue to do that.

But for now, I am finding hope and comfort at every turn and I am really, genuinely excited to meet this little man and watch God’s plan for him unfold.

And just so today’s post has some pictures, I will share the pictures I got of my son and husband at the park today!  It was windy and Jayden (and I) dislike the wind very much so he’s making funny faces in a few of them lol.

 

I LOVE his eyelashes in this one!

 

 

Guess what Jayden sees? A GIRL!!! lol

Sprinkling rocks

 

"Hold on Dad, I got this step" lol

 

Just like Mommy! Dislikes tunnels and wind!

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9 Responses to Hope in Many Forms

  1. Carrie says:

    WOW! What a week you and Josh have had. I can’t imagine walking through this without Jesus guiding, comforting and even correcting you – LOL! Continue to listen and learn from others.

    I love you cuz and look forward to meeting your little man. Give Jayden a big hug from us in the Northwest!

    Carrie

  2. Amanda says:

    Thanks Carrie!!! I will give him a HUGE hug for you guys..but not now..he’s sleeping K? lol

  3. Andrea Oakley says:

    Looks like a lovely day in the park! 🙂 thinking of the four of you with love and joy.

    Andrea

  4. Amanda says:

    Thanks Andrea! Looking forward to getting together with you! (Did I say that already on another reply? I’m tired. I’m gonna go nap now. lol)

  5. Erica says:

    Your beautiful way of seeing things inspires me-thank you so much for writing it for people to read…Jayden is a cutie!

  6. Donna says:

    Amanda, you are an amazing woman. I love your honesty, your faith, and your spirit. I will continue to pray for you and your baby’s health and safety. I know this little boy is coming into a great family who will absolutely love and adore him. I can’t wait to meet him! And Jayden is getting so big and so cute!

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