Disclaimer #1: **Forgive me if I ramble.** I'm trying to capture all my thoughts and emotions because someday Ben and Alex will be married with children of their own, Chris and I will be in our 80's forgetting where we put our glasses and I'll want to remember every little thing about Wynnie and his last day with us on earth. One day I'll read through these "old" posts and be lovingly reminded how blessed of a family I was given by God and what a beautiful life I have lived with all my boys.
Disclaimer #2: **This is the ONE time we'll go into detail with ANYONE about how Wynnie passed away.** We've already had people in barely 24 hours of him leaving us, ask us details about how he died and specifically how it happened. I'm sure it's all based on good intentions, not morbid curiosity. Whether you are a dear close friend, a relative or an acquaintance -- whoever you might be, please don't ask us. If you are not married to me or if I did not give birth to you, then this disclaimer applies to YOU. Still curious about how Wynnie passed away? Read this over and over again until it satisfies your curiosity and don't EVER ask ME or CHRIS or the BOYS about the details because Chris might just punch you in the face and I won't stop him.
Whew. That feels better. Do I sound rude? I'm sure I do but don't get your feelings hurt. Disclaimers are out of the way and now we can move on to what's truly important --- Wynnie.
Normally when the babies get sick I mention it in the blog or online to my friends but I don't get all dramatic about it and in typical Chris/Mercedes fashion, we weren't going to alarm everyone about how Wynnie's health had declined since Thanksgiving (and how he took a major decline in lucidity on Saturday). We've learned that hospice, doctors and many other well intentioned people have told us that "Wynnie only has one month to live". In fact we were told this 6 months ago. So to avoid the "boy that cries wolf" syndrome we kept Wynnie's rapid decline close knit to ourselves between us and our home nursing team. After being evaluated and having serious discussions with our specialists and our hospice agency, our pulmonologist confirmed to us our worse fears that as of Monday Wynnie probably only had 2-3 days to live.
This picture was taken on Monday. Dori was keeping a close on "Ninnie"
Yesterday, Tuesday December 2nd started as any other. As usual, when anyone wakes up we walk out to the family room to greet Wynnie and check in with his night nurse to see how he did over the evening while we were sleeping. I had a weird feeling after hearing how much of a difficult night he had so as soon as Ben, Alex and Dorian went off to school I was determined to hold Wynnie the entire day and only stopped for a few breaks (bathroom, a shower and a business conference call with a client). Other than that, I held him and talked to him and kissed him and stuck to him like glue while his nurse Hilda helped me with feeding, breathing treatments and overall comfort. I also kept showing him the "Heaven is For Real" Jesus painting on my phone and kept telling Wynnie "Make sure you remember this face... you'll see him soon!" If you have read this book you know exactly what I'm talking about! If you haven't read this book, please do. Selfishly I also kept showing him pictures of my mom and dad since I have a ton of pictures of them on my phone. Wynnie would gaze at them and I wonder what he was thinking all day long.
This is the painting from the book.
This was taken sometime between 6-8 PM last night... Dori was laughing while we has giving Wynnie kisses.
But last night Ben wouldn't leave Wynnie's side. He took a blanket and set it by my feet and said "I'm not leaving Wynnie because his nurse isn't here yet and he needs me to protect him." I reminded Ben that Wynnie's night nurse's shift doesn't start until 11 PM and that's too late for him to stay awake. He jumped up with his blanket and pointed at Wynnie and said "I have to stay! Look at him! Wynnie looks HORRIBLE!" To defuse the situation I said "well that's not very nice, how would you like it if Wynnie looked at you and screamed that YOU looked horrible?!" Ben smiled and ran out of the room. Five seconds later he walks back in with Froggy (his most cherished stuffed animal that he's had since he was 3 and he never allows anyone to touch). He said "This may sound weird but I want Wynnie to have Froggy." I looked at Froggy all torn and bandaged up and I said "I'll proudly let Froggy protect Wynnie tonight because Wynnie is a lot like Froggy. Froggy has been ripped, stitched, taped and broken so many times but look at his big smile on his tough face! Just like Wynnie!" Ben smiled real big gave Wynnie a kiss a ran upstairs.
Within minutes of Chris walking back to the other room to watch the game, Wynnie started to breath very differently. He was taking longer deeper breathes and looking straight ahead at me. Marcia called Chris to come back to the room with me. I kept telling Chris "he's leaving ... on my God he's leaving." Chris kept gently rubbing his chest and I kept whispering in Wynnie's ears that everything would be ok, that he was going to see beautiful things and he didn't need to be scared. Wynnie looked peaceful as he kept breathing deeper. The deeper he breathed, the lower his heart rate monitor was getting. I kept whispering and kissing, Chris kept rubbing his chest and rubbing his little hands and after just a few minutes Wynnie's pulse ox machine all turned to straight lines. No numbers, no reading, just lines.
His day nurse Hilda asked that if anything happened to Wynnie day or night she wanted to be there to say goodbye so Marcia called her and she came over within a few minutes. We decided to wake up Ben and Alex and tell them Wynnie had passed away. I couldn't let go of Wynnie so I asked Chris to go up there and tell them. He said when he walked into their "sleepover" that the boys were huddled up together sound asleep in Alex's room. He woke them up and told them. It was so late that they were both groggy and incoherent. Chris asked them if they wanted to come downstairs to say goodbye to Wynnie. He said "it's your choice if you want to, you don't have to. If you don't want to that's ok -- we just want to be honest with you an let you know what happened." Both boys sleepily hugged Chris and cried for a little bit and went back to bed.
By that time Marcia had called our hospice nurse and she was quickly on our way to our house. Between the 3 of us we were trying to find a heart beat with the stethoscope but the only thing we could hear in his body was the swooshing sound of the air that the machine was still blowing into his lungs. We took the machine off his face and held him until Melinda his hospice nurse arrived. Prior to coming out we told her we didn't think Wynnie was going to make it through the night "Do we have to call the ambulance or can we just wait for you?" She said that unless we wanted them to come out and do CPR on him (they are required to if they are called out to your house) we can or we can just wait for her. By law she has to listen for a heartbeat for 1 minute and then he can be officially "pronounced dead". She came, she did and we held him while she was in the kitchen making all the phone calls on our behalf. For nearly 1.5-2 hours we were able to love on him, kiss him, bathe him and dress him up in a cute outfit Chris picked out for him. The funeral people came to the house around 12:30 pm. We walked Wynnie out to the front of the house where they had a gurney/bed thing on wheels. He looked so peaceful and handsome as he was strapped into his bed and his head was place on a pillow and there were crisp white padded sheets underneath. The most painful part was the final kisses on his face before they covered him to load him up and take him away.
Chris and I stayed up for a little while longer. He made me 2 stiff drinks and I think he had 1-2 also. We cried, watched boxing on HBO and cried some more until we were both falling asleep in the chairs.
The next morning I woke up the boys for school. We decided the boys need to keep a regular routine for the sake of normalcy instead of staying at home all day watching us cry or going to the funeral home with us to make arrangements. When I woke them up they were still very sleepy so I asked them "do you guys remember what papi told you last night? That Wynnie passed away? Are you guys ok?" And like a ton of bricks it hit them again and they both started crying. We hugged, regained our composure and came back downstairs. As soon as Ben entered the family room and saw that all the breathing machines were turned off, and Wynnie and all his blankets were gone Ben ran to the couch and started crying again. Honestly I had done the same thing just 15 minutes before waking up the boys -- all the silence in that room and no Wynnie wrapped in his comfy blankets in that room was so sadly strange that morning.
Tonight Alex had a choir performance and I was so proud of him. His choir has worked very hard for these next 2 performances and while he was singing on stage in front of hundreds of people singing a christmas carol about peace my eyes welled up in tears because it reminded me of Wynner. I can only thank God for giving him such a restful passing in my arms, surrounded by the people who loved him dearly. I hope so badly that he felt our love and not our fear. Nobody was panicked, nobody was screaming crying or making a bad situation worse than it needed to be while he was being welcomed into heaven. Everything was calm and beautiful just as it should have been. I could not have asked for a more beautiful earth angel to be my son. Chris always said Wynnie "is the sweetest most innocent Johnson of all the Johnsons" and he is 100% right. I can go on and on about how much Wynnie is loved, how much we will miss him and how heartbroken we are. But words cannot describe what we feel. But our faith in God, our love for one another and our certainty of seeing him again will be our comfort. I am so proud of him!!!! He was a warrior who now has been finally set free to do all the beautiful things a normal healthy 6 year old is supposed to do. I imagine him running, jumping, laughing and talking --- happy and free from pain in the most beautiful place int the universe.
In lieu of meals/flowers/donations our family will be conducting a toy drive. Wynnie always loved playing with his favorite rattle and all his other fun small toys. Since it's so close to Christmas, we thought that a toy drive in memory of Wynnie could make a direct impact for another child's life this holiday season. Toys will be donated to Hope's Door & Catholic Charities of Dallas for underprivileged children. Please email me for more information about the toy drive and if you'd like to help children aged newborn-17 years old. Toys R Us, Target and Walmart gift cards can be sent to our home address for the toy drive as well. Email me or Comment on this blog and I can give you more details.
Wynnie holding his favorite rattle on his final day.