The words are hard to find. The peace is even harder. We did something no parent in our shoes should do when left alone in the hospital overnight. We researched the current diagnosis for Will.
I read the words on the screen and the all too familiar feelings of dread crept back into me. How could it be that my precious son may not make it after everything we have been through? Are we really headed down the road of eventually losing him?
I lost it. I am not ashamed to admit it. I absolutely, positively became the mom that could no longer hold it together. I cried, I asked God why, and I begged and pleaded that everything just be okay with Will.
This journey is not even close to over. Our fight for Will is only beginning. We need to educate ourselves and make sure we have the right diagnosis this time. We will get to all that though. The wheels are in motion.
For now, we have decided that we just need to love our son, to hold him and feed him every chance we get. If his days on this earth are shorter than we pray for, we are going to do everything in our power to make them the best days possible. We are his parents. We have to be strong for him. He deserves the very best and we owe him all of the newborn snuggles and cuddles.
Last night, after totally losing it, we went down and saw our little boy. He was bundled up and sleeping peacefully. I cried and then cried some more, but when those little fingers grab mine, it snaps me back to reality. The reality that he is here. He is here now!!! Praise God that he is alive now!! That is more than what we knew to expect just two days ago. We do have our miracle; it is time to cherish him and move forward in faith that our God won't leave our side.
Earlier this morning, Carlton was wheeling me back to my room and I caught a glimpse of a prayer on the wall that we have passed many times these past few days. I hadn't noticed it before but it was a great reminder since it is one of the prayers I recited many times at the beginning of this journey.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
We will hopefully learn more about Will today. Please just pray for us. Pray that we can live fully in each moment. That we can be strong for our little boy and strong for each other.
Our journey has truly just begun. I give praise today for a new day though. The sun is up. I hear the chatter of children in the hall. Our long, dark night is over. Our boy is alive. It is time to love him. To feed him. To be normal. Thank you God for today, tomorrow and the forever you have given to us and our precious little boy.
***im typing from my mobile device now and dont have time to proofread. Excuse an crazy auto-fill words.
Sweet baby Will is in my prayers. What a beautiful, precious gift he is! Wishing all of you comfort and strength. You are an inspiration!
ReplyDeleteLove and prayers are being sent your way! May God Bless you and your family and precious Baby Will!
ReplyDeleteBeen there,,, sounds like you are the perfect parents for Will. Prayers, Ellen
ReplyDelete"Pray that we can live fully in each moment." Hold on to this when you feel fear and saddness start to creep in. Many hugs !
ReplyDeletePrayers that God will envelope your family with love and peace...prayers that things are not as they seem but will be brighter in the sunlight.
ReplyDeleteEnjoy and cherish each moment and know that prayers are going up for all of you and especially Will.
ReplyDeleteLinda Phillips
I remember the moment I totally lost it as well, and became the mom begging and pleading with God in the hospital. You have come to a great moment of realization that Will is here NOW, that your miracle is aready here and you have him! That's an amazing feat in itself! I didn't reach that point until months had passed! Your faith in God is very strong! I have no doubts that He will lead you through the entire journey! We are continuing our prayers for you all!!! Many hugs and much love sent your way!
ReplyDeleteI can't find the words...so I guess I'll just keep praying for all of you.
ReplyDeleteYour aloud to cry honey! I am crying for you too!!!!! Just educate yourselves on his condition. Remember.....knowledge is power!!!!!
ReplyDeleteyes, words fail. Prayers for you and your family. How is your older child taking everything??remember and include her
ReplyDeleteCherish every moment. And I am praying for you.
ReplyDeleteI am praying for you and your family. I went to high school with Carlton. May God give both of you strength.
ReplyDeleteYou, your son and husband are in my thoughts. I am wishing you strength and comfort in this difficult time.
ReplyDeletePraying for you and your family Mary. Welcome to the world Will!
ReplyDeleteI'll be praying for you.
ReplyDeleteMaria Lewis Rohr
Mary, I have been waiting with trepidation for Will's arrival, checking every morning for an update in your journey.
ReplyDeleteLast night I spent the evening at the Annual Miracle Babies Ball, a charity I co-founded after the birth of my premature boys. Will was never too far from my mind and as I spent the night with other miracle families and staff that work so hard to help our babies come home I hoped against hope that this would be you in years to come.
Will is a miracle baby in every sense of the word. He has continued to suprise and ingnore the hurdles already in his short little life.
Experience every single second of joy and sadness, he is here, he is alive and he his yours xx
Naomi Rohr Co-founder Miracle Babies Foundation
Sending prayers.
ReplyDeleteHi, I do not know you at all, but I wanted to share a glimmer of hope after stumbling on your blog. We just had a child in our area undergo VEPTR surgery for Thorasic Insufficiency Syndrome. According to their doctors in Boston, they now think Baby Jaxx will lead a normal outside of contact sports. He was born without several ribs, a kidney, and a severe curved spine. Though I do not know you, I will pray for a good outcome for your family!
ReplyDeletePraying for Will and for you as his parents. We have a son with seizures and mild cerebral palsy. We understand.
ReplyDeleteI'm so sorry you have to go through this. It's supposed to be the happiest rather than the most worried time of your life.I'm praying for you and especially for little Will. May the Lord hold you in his hands.
ReplyDeleteMrs.McGinnis
We came to the point with Lauren that we cherished every moment with her. We held her, sang to her, rocked her, and loved her every moment we were blessed with. Two years later we are still holding her, singing to her, rocking her and loving her. Only God knows the number of days Will and Lauren will be here. I had to stop reading the information I found online and just do what worked for her. There was not a doctor out there that was helpful to us. We prayed alot about everything we did with Lauren. God has big plans for Will. I believe that because I know he has big plans for Lauren.
ReplyDeleteI won't tell you not to cry, because tears can be healing, but I will tell you to hold to your faith, you may think you are losing it at some point but it is then when God will be holding you in His hand and taking care of all of you. I pray for you all daily and hope for a healing miracle for Will.
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