This is my baby boy Locke William Arrington

I am 21 weeks along. Last week, after many tests, my baby was diagnosed with Trisomy 18, a rare chromosome condition which severely effects the baby. Babies with this condition have a very low birth weight, they have severe problems with their heart, as well as how their esophagus connects to the stomach, and other abnormalities of the organs. 1 in 5000 babies are born with this 80% of them being females. It is not genetic except in very rare cases. Due to the presence of several life-threatening medical problems, many infants with trisomy 18 die within their first month and mostly days. Only 30 percent of children with this condition go full term.  Of those that go full term, half are stillborn.  And finally, of those born alive, only 5 percent live to their first year. (I had to copy and paste that because my fingers couldn't physically write it).

I have been trying to work up the courage and strength it was going to take me to do this post. I'm two minutes in and already my tears are flowing. There is nothing that can prepare you to hear news like this. It was like everything I knew and everything I had planned came crashing down around me almost in slow motion. I couldn't fully comprehend what was going on around me and what people were saying to me. I literally felt like for days and days I couldn't catch my breath I could never get enough air, I guess in some ways, I still feel like that. Once the initial shock set in my thoughts obsessed over and over about haunting questions. How to I keep functioning through this pregnancy knowing what I have to go through at the end?  How can I ever say goodbye to my baby? How can I leave the hospital without my baby? How do I plan a funeral for my baby? How do I pick up the pieces after and keep living? They tore at my heart and left me broken. I still don't have the answers to really any of these questions. All I know is that I am not alone. Through my faith in the Lord and in Jesus Christ I will be able to do anything even though right now it feels impossible. I am filled with gratitude and love for my family and friends that have helped carry our burdens. Because of the many prayers and much fasting done in our behalf I know that our family will make it through this. My mom and sister flew in on a moments notice and are here for two weeks to cry with me and to lift my spirits. My husband is my rock. He is strong and immovable and I admire his deep sense of faith and understanding of the gospel and of the plan of salvation. My brother Will who is on his mission wrote me a beautiful letter that I have got much strength from. Here is a little part of it

 

Heavenly Father is watching this particular plan play out very carefully.  As your family grows and you get to meet your wonderful new son heavenly Father will be closer then ever.  Your family is eternal, your son will not be gone.  It is hard that he has been called to work on the other side of the veil but he'll still be with.  he will be in your presence.  And the time will come when we all be together again.  I certainly will meet him and have no intentions of not being with him in the celestial kingdom. He is one of the most righteous servants God has.  he has walked among prophets and will continue to do so.  the honor you have to be his mother and to be sealed to him for all eternity should not be muffled by thoughts like, leaving the hospital without him or having to plan his funeral.  By all means morn, ill be morning with you.  Ive been crying all morning and my  socks are filled with snot cause i had nowhere else to wipe it.  but those thoughts diminish the sacredness of the calling you have received and make your eternal family seem less real, less united.  you are together now and will be forever.

 

I do feel honored that he chose me to his mom and to come to our family. I told Matthew that a couple days ago I felt like a coating was poured over my body and although I do not feel peace, I do feel like I am being strengthened to focus on the big picture. I know that it is the Lord's hand doing that for me. One day at a time and sometimes it's one hour at a time we will get through this. I want his life to be remembered with as much joy as possible. He is alive right now I can feel him inside of me and his sweet spirit. He is such an amazing blessing to our family already and I know that one day I will get to raise him. Although at times I want to scream at the top of my lungs, let me raise him now please let me keep him!!, Heavenly Father has bigger plans for my sweet boy Locke. It is so not my personality to name my babies before the hospital but I wanted him to feel part of our family for as long as possible.

Now that my shirt is drenched and I have gone through a box of Kleenex I think I will go cuddle with my babies. They are what keep me from being in the fetal position in my bed all day long. I can see in Lakens eyes her longing to feel like things are normal again and I will do it for her and Track no matter what. I want to say one more time how grateful I am for the fasting and prayers on our behalf; you will never know how much they have helped.  Many people have asked what to pray for and I think if there is one thing that sticks out in my mind is my overwhelming desire to meet him and tell him how much I love him and how grateful I am that he is part of our family, even if only for a very little while. I know whatever the Lords plan is will be but one can pray...