"Man-Man"

On this day one year ago Waylon was still inpatient and doing "well" for the week so far. So I decided to stay home and put his bed together and sort through his clothes to have it all ready for him to come home to. I thought it wouldn't be long before he finally got to bless our house with his graces. 

I recall this day often, almost daily. The day started out with me happy, but I had an unsettling feeling that something wasn't right, I couldn't quite put my finger on it so I played it off as guilt for not being at the hospital that morning. Even though I was planning on going in that afternoon. Scrubbing house, folding clothes and jamming to music when my phone rang. I answered to an inconsolable friend on the other line. A woman I met while at  the hospital. Her baby boy was there in the PICU with Waylon. I met her husband and her handsome older boy. We spoke daily, and grabbed lunch together almost every afternoon like clock work. It was my normal, her normal. Our only piece of sanity within our world of insanity. Someone who understood every concept of what the other was going through. The daily rides to and from the hospital. The hours spent sitting in a room with our sick children listening to peeps, swooshes of machines and the army of doctors marching in and out of the room. We would text throughout the day. Peep in on eachothers lil ones when the other wasnt in the room and text how they were doing to the other in case they didnt make it in just yet. We became eachothers confidants and battle buddies through this war of CHD and the roller coaster it brought. We knew eachothers lil ones diagnosis and the dangers they had faced so many times. So I was used to her text and phone calls, they were regular check ups for both of us.

But this day was different. The day before she finally got to hold her beautiful boy Rayshawn for the first time in 53 days. She had seen him on ecmo (life support) numerous times, dealt with his complications and stood by his side before and after all of his unexpected procedures. So it was a wonderful day for her to finally hold her baby in her arms again. Something she had become acquainted with since he was home the first few months of his life requiring only check ups from his cardiologist. I admit I was a bit jealous of the fact that she had gotten to hold her baby, bring him home and he got to live a normal life before surgery. While the start to our journey started out so differently. But I knew they had struggled with his complications since his surgery, including other unexpected surgical interventions.

My heart went out to her just as her heart did for me. We were connected through this journey. So I guess it was only fitting I was one of the first people she would call on this day. 

I answered as I always would, but the response was not the same. She was incoherently crying. I got her to calm down enough to understand that something was wrong with man-man (rayshawn). He wasnt looking right, acting right. I felt my heart sinking and I just wanted to run to her, I felt as if she was calling to tell me my own son was doing badly. I had no way of getting there and then the guilt set in. I wasn't there for her this one time, why wasn't I there, why didn't I just go ahead into the hospital that morning like always?!?!!? I was counting the time for my husband to get home so I could get to her, but time was ticking away. 

She continued to text throughout the day but things weren't looking any better. By the time my husband got home I was a nervous wreck and was rushing out of the door to get there. Walking into the unit it seemed heavy. I found my friend in the consult room. A room we all hated, dreaded, due to the seemingly bad news that was always delivered there. But the room was packed with people. I walked in past everyone to hug her. To show her that I was there no matter what and always will be. 

At 9:37 October 22nd 2012 Rayshawn "man-man"  Lewis Smith passed away. I felt as if I had lost one of my own children. But I felt even worst for my friend and her wonderful family. Robbed of their childs life, of his future, of the joy of seeing him grow. A hurt that will never go away. I had only come close to that feeling. 

There are no words I could say to her to bring him back, to make it "all better".  All I can do is reassure her daily that I am there for her and love her as family, along with her husband and son. While others unaffected expect grieving parents to "move on" and "get over it" or they are to afraid to speak the childs name in fear of upsetting a parent, when all they want is to know that their child is still remembered. I know that the pain will forever be there for them and there is NO time limit for them and the many others that I know who have been so unfortunate to have lost their child. No parent should experience this, but it is a sad reality for a parent of a critically ill child. That we could be stricken with the death of our miracles at anytime. 

So once again I hug my baby boy tighter. And I feel blessed in knowing this wonderful people and their warriors. But even more so blessed to have gotten to know this family. 

R.I.P. Rayshawn "man-man" Lewis Smith. You will never be forgotten.