Day 40: Will's Lala

96 days.  It seems a lifetime or just a brief moment depending on the situation and perspective.  If someone told us we could not have chocolate, a cup of coffee, take a shower or go outside for 96 days it would seem like forever, too many days, maybe not possible.  If someone asked you to build a house, lose 10 pounds, write a book or clean out your aunts’ barn, 96 days would not seem near enough time - we need more time.

96 days with my grandson, Will King, was not enough time.  We all wanted more, just more time.  Even now I sometimes allow myself to daydream that Courtney is expecting the twins this spring or summer and we will get to have him.  And yet 96 days was all Will needed to make a profound impact on us. 

“He gives strength to the weary and increases the power of the weak. 
Even youths grow tired and weary, and young men stumble and fall
but those who hope in the Lord will renew their strength.
They will soar like wings on eagles; 
they will run and not grow weary,
and they will walk and not be faint.”
Isaiah 40:29-31

On a typical day I am awake by 4:30 listening for Emma Grace.  We are up by 5 playing in the playroom.  We eat breakfast and go outside - she and I love outside -  and about 9 am I am walking Emma Grace while she naps.  We eat lunch and then I take her home, say hello to Caroline, I don’t ask to hold her, she is too fragile for me.  I just look at her and pray, "Thank you, Lord".  Courtney is rushing around so when Taylor gets there they can switch as quick as possible so Will is not alone long.  I either pick up Joshua from school and play with him or go do errands quickly so I will be at Wolfson Children’s by mid-afternoon.   I love these children, I would do anything for them. I love Courtney.  I circle around the cold concrete parking garage, a flood of emotions.  God help me be strong for Courtney.  I go to the 3rd floor, I don’t like elevators.  I ring the bell to get thru the doors, if they don’t open I ring again.  The sign says to only ring once but sometimes I ring 3 times, I am impatient.  I come  around the corner and look down the long hall.  Will's room is in the back corner and I see Courtney standing on a stool, she is short, she is sweet, so she can look directly at Will.  Oh, God take me. I have had a big full life, I am ready to come home, give him to her, I can watch from up there, please God.  Some days I have to go back out, go in the restroom, right past the waiting room, turn left at the hall and its on the left.  I have to be strong for Courtney, I wash my face with cold water, once again I beg God.  Seriously, Lord, I am not afraid of death, just let Will live.  

96 days is not a lot but a lot can happen in 96 days.  

I felt bi-polar - laughing with Jbob and EG one second, crying for Courtney the next.  Joy-anger, happy-sad, grateful-mad, hope-worry, understanding-questioning.​

Thankfully, over this time my friends helped me to endure, understand, keep perspective and overall just remember that God is in control.  I often joked that if I didn’t return home it would be cause God was just tired of me and to look for a pile of ashes on the floor as I had been so angry.   One of my very dearest friends since childhood was especially comforting to me.  Connie has shouldered more heartache, faced more trials and experienced more loss than anyone I know.  Even so, she has not grown bitter or angry, cynical or mad. Instead she has grown stronger, more gentle, empathetic and compassionate.  She loves with a different kind of intensity.  Below is our text thread.  I decided to share it because I thought it was the best way to explain Will’s impact.  Will’s impact is in these words, in my heart and life.

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​December 1,2017 - Two new babies came tonight, everyone doing well. I have four namesakes now. They are like little elves to me. Will looks just like J-Bob.  Here’s to C’s new life, pretty nice.

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12/2 - Chris named conversation – Willie, Callie and the round up gang- yeehaw 
12/7 -babies in hospital, have infection and little Will having hard time. Please keep in prayers. This is saddest I have ever been, my heart is broken for Courtney. 
Connie - clearly his name is appropriate for his will to live and God’s will. Two miracle babies with hearts of lions. Clearly God has a purpose for their lives.
12/11 - Will on ecmo.  Chris named conversation Gods Will 
12/24 - Courtney has held Caroline quite a bit and doctors seem optimistic that she will make full recovery and may even leave hospital without meds, painful to wean off but she is doing well.  Little Will still fighting but his little heart so very weak. I am still praying for complete recovery but will somehow find peace if Gods plan is different 
1/7 –I just finished reading Charlottes Web to Will, it is emotionally draining and reading helps, I figure he likes too.  Good thing is doctors saying when he goes home instead of may not make thru night.  Prayer is powerful and I know Gods hand is on him or he would be gone, Caroline too, they are amazed she went home

1/9 - brought this up to start reading –pretty cool- huh.  I’ll give to C when I’m done. Thank you 
Connie - oh my goodness truly my favorite book ever.  Did I give her that when she was a baby?  
Me - I don’t know. Last copyright 2000 so would have been in college – maybe graduation, I can’t even remember what year she graduated, I’ll ask her.
Connie - she graduated 2007
Me - 2007 so maybe high school. Anyway very nice and interesting I picked that book 
Connie - oh yes. I think I will read again. I think will definitely needs to hear.  Taming the fox is my favorite part

1/11 - they are scheduling to put a trach in, idea is over time he will grow new air sacs and new ones would outweigh bad ones. Amazing he is still here fighting
1/19 - it is getting hard. He was doing so well  
Connie - Candy it only takes one miracle. This can happen. Don’t lose hope.
1/29 - CT (Christopher, my son, Courtney’s brother) just sent news of baby coming mid august , everyone getting a cousin.
Connie - oh my goodness. What a blessing will be like jos boys and little women out at the farm.
Me - when it rains it pours, will be whole basketball team. Lil wildcats. 
1/31 Connie - how is Courtney’s health I keep thinking about how she is still recovering from surgery and taking care of newborn and back and forth to hospital. Really shows what a mother is capable of 
Me - Shes amazing, already running when she can, probably overdoing but that’s just a given for most mothers.
2/12 Connie - Candy I wish I was there to help you   I know its just one hit after another   I don’t understand why you have to go thru these trials but you are so strong and so is Courtney   just remember how you climbed out of grand canyon with blood soaked shoes and you made it.
Me - I wish I could just do that as many times as it took to make up for this, not sure how much more I got.   You are my greatest role model for not being bitter, remaining compassionate and empathetic so I will keep on but could endure more physically than emotionally.  Courtney is sick and now today echo showed multiple clots, I just so wanna have something great to say how are y’all, I hope well.   I will not grow weary, I will not lose heart, just read that

“Therefore since we are surrounded by such a great crowd of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfector of your faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the throne of God.  Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.”
Hebrews 12:1-4

Connie - ….one day we will see the bigger picture and understand  
2/13 - I am not physically exhausted but emotionally as low as I can be (or hope) I know you know how it feels.  I wish I could walk 10 miles but don’t want anymore bad news  
2/17 - This brings me such joy

2/17 - I rocked will last 2 days, so weird cause he looks better but heart is weaker and now doctors don’t think kidneys will kick on, can’t have transplant till 20 pounds and not sure he would be candidate cause of heart/lung situation unless they transplant that too  it is like running a race with no finish line Connie, … but new mantra, Hebrews- do not grow weary, do not lose heart. … Of course last night when I left Courtney’s on my bike I bawled like a baby….   I wanted to call you last night but couldn’t get a grip on myself and needed to get home, hadn’t showered for two days and actually grossing myself out…sorry I wrote an essay, I should’ve worked this hard in college.
Connie - the mantra from Hebrews is so perfect         
2/18 - I am with Will right now and he is sleeping in new pillow, he likes to sit up.  Really starting to show his personality
2/19 - Will had a good week but positive (fluid balance) again, hard to keep neutral
3/1 - Will had a hard week, swollen again. Last week was so good. I cannot take it when he is in pain. it just crushes my spirit   I am still begging God to heal but am resigned to fact that more peace might be offered if he took him   I know God won’t give more than we can bear but am afraid its getting close.  I have enjoyed listening to Billy Graham on radio this week.  You know I accepted Christ at crusade in Lexington around 1971. Daddy took me and I walked down by myself and accepted Christ –sermon was on Elijah, we sure are blessed
3/3, 4:28pm - apparently they are seizures.  one lasted 20 minutes , seems like his body is just shutting down
8:32pm -seizures are still going on
10:27pm - C asking if seizures went on what would happen, doctor said he could wake in catatonic state.  I am starting to feel this is too far and wonder when doctors will say its too much.  Its not the same child as last week, I feel like we are destroying something God gave us cause as humans we cant let go. What have you learned and taught in your death and dying class about this emotion.  I don’t know maybe the devil is swaying me to have these thoughts.  This is hard, I worry and think I could go crazy.  
Connie - I don’t think it’s the devil making you have those thoughts, I think it comes from place of love. Love and wanting to share your love with this baby in this world and not wanting him to suffer.  Honestly we both know its in Gods hands.  People and babies die when no one expects it and will lived when no one expected it.   Maybe you just needed this time with him to be at peace if he does go home to heaven.   This blessed time to hold him and just be with him    its all so precious      the book I use says doctors are very reluctant to give up on children, they will let older people go but the younger they are the harder they work to save them, I think that it comes from place of love.   It is so hard to be conflicted but in the end you will find peace 
3/4 - after sleeping on all my conflict and questioning I am convinced risks are outweighing benefits and would be at peace to let natural process occur, I know my conscious is heavy with guilt of all we are putting will thru cause we want him here, it is not about quality/quantity of life it is about mercy and having peace with letting go of something we love so much, you are right harder with baby but I do believe when you truly love you sometimes have to do something more painful. I think about woman in bible that made decision to let other woman have her baby when king was saying to tear in half and give each half, I need to go reread but you know story.  Anyway I want you to know how much help you have been and I am sorry if I have not been as sensitive to your hardships as I now understand more fully, I have always prayed for you and family but now can pray in a much more intense way and I will 
Connie - I think it is okay to let nature take its course I think that was your mothers philosophy and I respect that so much, we also let my dad die naturally, the day of Elizabeths funeral I asked myself if I would bring her back if her body was extremely compromised and my answer was a definite no, I would never choose to let her suffer like that.  Her death was the hardest thing I have ever dealt with but I know there are things worse than death   Shelby is happy and not in pain, he often tells me he is happy. It is not the life I would have chosen for him but it is part of Gods plan so I am at peace with it and we make it work.  Also you have always been loving and kind and understanding with all my trials but if your perspective was limited because you had been spared this suffering then all I can say is I wish your perspective was still limited, I wish you did not have to go thru this but  if there is value in suffering it is empathy, love and kindness.     A nun spoke of the –lucky dark - suffering is so dark but it is lucky cause it gives us the opportunity to grow in wisdom and spiritually.  Dark underwater mud is like suffering but it nourishes the beautiful lotus flower, without the dark the lotus can never bloom.     
3/5 - he is so sweet, easy to comfort, loves to be touched,  very endearing child.  I think a lot of people up here are very attached to him. I will have total peace if they decide no more rescues, to let him go in peace, C said they could keep him like this forever- which I find kinda scary  
3/6 3:05pm - Courtney rocking him.  He is peaceful.  She is just too young to know this pain.  I would do anything to of kept it from her, just anything. 
6:47pm -he is still peaceful in Courtneys arms.   He is free now with little angel wings on ready to go but I think holding onto his sweet mother.  Not sure when God will take this sweet cherub but he has blessed us all just knowing and caring for him.   Connie it is just so painful- I or no one can know unless you do it.  I am so glad you have never gotten bitter and have always showed such empathy and kindness- it is something to be admired and emulated with genuine sincerity -thank you for that and your commitment to Christ  
Connie - I had no idea that much pain existed in the world.    I wish I could take this from all of you, especially sweet Courtney.
3/7 12:09 am – Will is with God now.  He looked beautiful and was very peaceful- I  agree I didn’t know so much pain could exist.  I do find great peace knowing he is perfect and no pain but watching Courtney was just heart wrenching. Thanks for so much support.  I guess I knew Friday night when I was there and doctor came in to see him.  I heard her talking to nurse and telling her to call her if anything changed and that she didn’t think he would make it thru weekend. That’s when she asked me if I thought Courtney would be able to talk about DNR (Do Not Resuscitate) code   I knew I had to help Courtney process different scenarios   His little heart just got hurt too bad I guess.  I took picture of Courtney holding him earlier tonight

“Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind.  Then you will be able to test and approve what Gods will is-his good, pleasing and perfect will.” 
​Romans 12:2 

Connie - my heart aches for you dear friend.   all the love in the world and all Gods love cannot take the pain away but the love will cradle you until you find your way out and find beauty again.  
Me - We will find more beauty, more appreciation and have more empathy because of Will-even tho we only had him for 96 days his impact is enormous and we are blessed 
Connie – yes you are blessed to have had this little angel with the lions heart in your life , love gives meaning to our lives because you have unbounded love for your baby the pain will be unbounded too.  
3/8 - Connie my heart re-aches for you   I hope I haven’t caused you too much pain but you were the only one who could know how we really felt but if someone said they could take this pain away I would say no cause that would mean we wouldn’t of had Will and he is such a blessing
Connie –I feel so privileged to share my thoughts and feelings with you and to have you share with me    it never causes me more pain cause the pain is always there     sharing that pain with others who had the same loss is a bond that no one else understands but I did not want you to share that bond with me but as you said taking that bond would mean taking away his amazing life.  once when I was in college a nun talked about her work in the neonatal icu and she talked about the drug addicted baby who only lives one day.  Another nurse said the babies life had been a waste.  the first nun said the babies life had not been a waste cause he was loved   she had loved that baby and love brings meaning to our lives    will , will be loved for decades and decades , especially by Caroline, they were womb mates and I am sure  she will never forget her brother  as you said in one of your texts you will use this suffering and Gods grace to be more caring and loving and empathetic because of Will.
3/9 - I had 3 dreams of Will running around as little boy in the clouds. I didn’t tell Courtney till other day they were always in the clouds.  Courtney is channeling her energy working with Wills heart doctor to donate to his patrons of the heart mission. that was the doctor she trusted most and was always optimistic , she had to wait till Tuesday morning to talk to him before she could make decision. her other favorite doctor came and reassured that it was right and will was in good place now.  The heart doctor does 10 or so heart procedures a year for children from all over the world, they raise money to get them here to do surgery, I think he has even adopted one we are hoping to start a foundation that would help support his mission.  I know these will be most impactful days of my life and I want to honor his life however we can, he was so sweet, you would of just loved him. 
Connie - this is going to be an amazing foundation and do so much 

“Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” 
​James 1:2