Wednesday, April 21, 2010

What do I pray for?

Friday. It's a dreaded day. The day that will give us a much clearer picture of what we are dealing with.

Friday is the day we will receive the preliminary results of the amnio that tested for Trisomy.

If you aren't familiar with Trisomy here is a quick (very uneducated overview) of what I know. I know that there are a few different types of Trisomy. It is a chromosonal defect that is often times fatal. Trisomy 13, 16, and 18 are all fatal. Trisomy 21 is Down's Syndrome. (if this info is wrong, PLEASE correct me...i've tried NOT to research it until I know that I absolutely HAVE to....)

The doctors tested for Trisomy because Hypoplastic Left Heart Syndrome can be an indicator of any of the Trisomy's. If any of the Trisomy's are present (with the exception of Trisomy 21) the baby will not survive, and they will not even attempt surgery.

Here is my struggle. Do I pray for Trisomy to be present? If it is, Joshua will be spared many open heart surgeries, doctor's visits, medications, and the chances of eventually facing the possibility going into heart failure. Precious baby Joshua will go home to Jesus and live in the presnence of God Himself. BUT, we will have to deal with the loss of a child. We will have an emptiness that can not be filled. We will have to face watching our child die and saying good bye.

Do I pray that Trisomy is not present? If it's not, he will be whisked away within hours, maybe a few days, to have the first of 3 open heart surgeries. His chances of survival not the greatest depending on how sick he is. He will then have to face another 2 surgeries before his 5th birthday along with a long list of medicines, and doctor's visits. We will be faced with long NICU stays, financial hardships, among many other obstacles.

Please dont' think that I don't want my precious baby to live....It's to the point of "choosing" between bad and worse and I'm not sure which one is which.....this is not something I ever signed up to do. I don't know what to hope for. I don't know what to pray for. I don't know what to think.
 

I guess for now, I just need to focus on right now. Loving my children, my husband, my God. Laughing, living, praising. I guess for now, I just need to continue to rely on the support, encouragment and prayers of my friends and family who are all hurting right along with me and Shane. Right now I just need to rest in God's loving arms and trust that He is carrying us through.

Edit: After reading this over and reading a few comments and facebook messages, I am reminded that I ultimately just need to pray that God is honored. I need to pray that God's Will be done and no matter what that looks like, He will be glorified through all of it. I need to pray for comfort and peace for baby Joshua, peace for Shane and me, and ultimately, that no matter what, God be the center of it all. I'm not going to even question what to pray for. I'm just simply going to pray. Whatever that means, and however the Holy Spirit moves me to pray. I hope you do the same. 

6 comments:

Amy said...

I can't get you off my mind (I happened to check this RIGHT after you posted, obviously). I wondered the same thing: what to pray for (?). But the bottom line is that God already knows how and what is going to happen. He loves Joshua so much more than even you do, if you can imagine that (I can't... I have a 2-year old and I can't fathom anyone loving him more than me, but yet, I know God does). So for you, I pray for strength, courage, peace, and wisdom. For baby Joshua, I pray for mercy, whatever that means, and I will continue to pray like a madwoman for his health. My heart hurts for you in a way I can't describe, and I've never even met you!

(Oh, and for the record, you are correct about the Trisomies. All Trisomies except T21 are considered "incompatible with life." I'm practically an honorary geneticist after my chromosomal loss history, LOL)

Amy said...

Oh, I also meant to ask (if you can/want to respond), did you have a Nuchal Translucency ultrasound done sometime around week 11-13?

Becky Cox said...

I was struggling with what to pray for too last night. I talked about it with my lifegroup. We decided the best thing to pray for was complete healing. We decided to pray without doubt that God can heal Joshua. I totally understand what you are saying though. I guess right now we just need to pray for healing and that the best thing happens. Sometimes that healing only comes in Jesus's arms. Whatever God choses we will cross that bridge when we get there. Love ya!

Trisomy 13 - Patau Syndrome Support said...

Don't loose hope.... There are many survivors.. and many wonderful support sites...
off the internet searches... and facebook.

http://www.livingwithtrisomy13.org
http://www.trisomy.org
to name a few...
My child is now 9 yrs. living with trisomy 13.
Let me know if I can help you navigate this unique like journey and help you find the resources to give you the support you need.
There are wonderful support resources for the prenatal journey off this page, look at the DONT MISS section to the right.
http://livingwithtrisomy13.org/prenatal-diagnosis-of-trisomy-13.htm

Also check the facebook pages.. lots of wonderful sites there too..
Blessings,
ThereseAnn, mom to Natalia now 9 yrs. with full trisomy 13

Amy said...

Hmmm... I stand corrected about my Trisomy statement. :-)

Annie said...

Our best friends have baby Hannah Joy who is over 6 months old with T-18, if you would like to talk with them I have their facebook information for you.
They were told they would miscarry and never meet her alive, they had her a couple days past her due date, and took her home within the first week. She still lives with them. (Her mom is a nurse) Prayer is so powerful!

Praying daily,
Annaleah

 
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