Friday, January 15, 2010

It's Finally Here!

Our Ladies Conference starts tonight.  I am so excited.  Right now I feel like my candle for Jesus has been extinguished.  I'm hoping to get it relit this weekend.  I'm can't wait to see what God has in store for us.  I'm speaking tonight about Johanna and how she has been a blessing to our family.  I can't wait to have an opportunity to talk about my baby girl.

I've shared so many parts of our journey and struggles on here that I wish all of ya'll would be able to be there to see one of my many life dreams come to fruition.   Since ya'll can't be there I thought I would give you a sneak peek into what I'm talking about.

We decided to name our daughter Johanna Raye.  We named her Johanna simply because I liked the name.  I had like this name for a very long time and had always wanted to use it if we were ever blessed with a daughter.  We didn't know until a few weeks later that Johanna actually means "God is Gracious.".  How fitting for this very special little girl.  At this time we also gave Johanna her verse.  Both of our babies have their own verse.  Clayton's is 1 Samuel 1:27.  We gave Johanna Psalm 139:14.  "I will praise thee for I am fearfully and wonderfully made.  Marvellous are thy works and that my soul knoweth right well."  Even though Johanna was considerably different than most infants, she saw still fearfully and wonderfully made.

Trisomy 18 is a rare, incurable, and mostly fatal chromosomal abnormality.  Normally each person has 2 copies of each of their 23 chromosomes for a total of 46.  You get 23 chromosomes from your mother's DNA and 23 from your father's DNA.  Johanna had 3 copies of the 18th chromosome.  The 18th chromosome is a power house as far as cell function is concerned.  Every single tiny cell in her body was affected.  There are 3 different kinds of Trisomy 18.  Johanna had the worst kind.  95 percent of babies with T18 die in utero before they are born.  Of the 5 percent that are born alive, only 5 percent will live to their first birthday.  The children that do live past 1 year old have profound mental and physical disabilities.  There is no treatment for Trisomy 18. The only "treatment" is to terminate the pregnancy.  In fact because most women choose termination the mortality statistics have changed in the last year.  We did not and will never choose the path of termination.  It's not an option for our family.

We felt like we had been given a death sentence for our daughter.  Little did we know that we had actually been given a fountain of blessing.

That's just a part of it.  If my lappy will cooperate I'll get the rest on here within the next week or so.

I also have a very special prayer object for Chad, Clayton, and me.  I don't want to discuss it today.  But I will very soon.

Enjoy your weekend.  It's gonna be great.

4 comments:

christina said...

have been praying for your heart as you prepare for the conference, and praying for your weekend, and the hearts that will hear Jo's story and the glory of God and His perfect gift..thru you.

can't wait to hear all about it!

Emma and Company said...

I will be praying and thinking of you tonight! What a wonderful message you will be able to bring-to tell people of the perfect gift that God gave you. Once again, I am so happy you chose to keep this angel...what a wonderful choice!!

Jennifer said...

just wanted you to know that i've been praying for you this week and all day today!!that He will bless you with peace and strength as you share your story tonight...you are one special lady with a very special story to share. i am honored to say that is my fiend nikki, you are such a blessing in my life. can't wait to see what God has in store for us all this weekend! love ya~jennifer

Jamie Lynn said...

I feel so horrible that I missed that.. it was beautiful!! & I can't wait until I get to read the rest of it. I love you! & next time you speak about her, I WILL BE THERE!! :)<3