Monday, December 29, 2014

Wynnie's Legacy ... Heartfelt Appreciation!!!

Wynnie's Froggy and rattle took center stage.  

What a beautiful service we had in honor of Wynnie on December 6th.  Although we were sad to say goodbye to our sweet little boy, we were overjoyed at the outpouring of love and support from our friends and family that came from near and far to honor his memory. One person after another came to the funeral home with a toy for children of all ages.  Many tears were shed, but his celebration of life at our home was truly a celebration -- Wynnie would not have wanted it any other way because that's what he knew in our home -- love, laughter and friends.  December 6th 2014 was not any different.  

When we arrived to the funeral home Alex timidly asked me "where is Wynnie?"  ... we forgot to mention that we found the PERFECT earthly home for him until we see him again in heaven.  He was peacefully cremated and we'll keep him in this beautiful moon that is tucked away in a special place in our home.  We picked this because it looks like a big rattle (Wynnie's favorite type of toy).  Chris's idea was to take him with us (whoever passes away first) and Dori will be buried with whoever passes away second.  It's reality, it's sad, but it's truly symbolic of being a parent. I love that he thought of that so we can stay with our babies forever.  
Over the next couple of weeks our friends went into overdrive in collecting toys in Wynnie's memory.  We had friends collecting toys and donations ALL over the United States.  This photo is from the toys collected in Frisco from our friends Kacy and Frederick Zeeck. 

These toys were collected from our friends Stephanie and Patrick Kinser in Plano, Tx. 

The Dallas Phi Mu Alumnae collected toys as well at Francine & Rick Dalton's home. 

Here are the toys we collected in our home... this picture was taken after TWO SUVs full of toys had already been delivered.  

The 5th graders at Coyote Ridge Elementary (Dori and Wynnie's school) spearheaded their own toy drive.  The 5th graders know the babies well since they come in as special play friends to the Functional Life Skills class on Thursdays, so they played with Wynnie last year while he still went to school. 

Chris and I conservatively estimate that YOU helped us raise over $10,000 worth of toys, gift cards and cash for Hope's Door and Catholic Charities.  Just imagine how many HUNDREDS of children this Christmas season were blessed and felt LOVE because of YOUR generosity!!  Our friend Angela who made MANY deliveries to Hope's Door told us that the administrators there have been so thankful from all the donations.  Wynnie's toy drive amassed so many toys and gift cards that they set up a special Toy Store for the abused women to "shop" for their little ones.  This toy store would not have existed if it weren't for Wynnie.  This toy store would not have existed if it weren't for our friends and family (and even strangers that sent in donations!).  Wow!  Wynner's legacy truly reminded our family the true meaning of Christmas -- about giving, about loving, about honoring.  Thank you all SO VERY MUCH for bringing the spirit of Christmas to life.   

Just a couple of days before Christmas, we gave Santa a visit.  We took Froggy to represent Wynnie.  As you can see, Dori and Santa shared a sweet moment together.  

Thank you Wynnie for making us better by your example.  There are people who live to be 80 years old that don't leave as big of an impact as our sweet chubby little warrior Wynnie did.  We are so proud of you sweet boy.  We love you, we miss you, and we can't wait to see you again!  Thank you for setting us up for a blessed 2015.  From our family to yours, we hope 2015 brings you joy, health and prosperity.

Thursday, December 4, 2014

Wynner's Toy Drive Details

For Wynnie's Toy Drive, if you are not able to stop by our house this weekend then please send toys or toy gift cards (toys r us, walmart, game stop, target, etc) to Hope's Door Inc. Please specify your gift is in memory of Wynnie Johnson who wanted kids to have a Merry Christmas for him.  

If you live in town and want to give an actual physical toy, their toy drive specifies that toys need to be new and unwrapped and you can choose an appropriate gift for age newborns-17 years old.  

Send donations to-- 
Hope's Door 
Attn: Adela Plasik 
Holiday Toy Drive 
860 F. Avenue Suite 100
Plano, Tx 75074

We thank you in advance for your generosity.  Wynnie will be so happy!  

Wednesday, December 3, 2014

Wynnie Is Now an Angel

Our precious son Wynnie earned his angel wings last night around 10:20 pm in our home, in my arms with Chris right beside me.  So many times I've read blogs of other i-cell parents who write of their child passing away and every time I read their's I would bawl my eyes out and think that sadly that will be us one day.  After six years of being such a loving and sweetly brave warrior, Wynnie took his last breathes in peace.

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.   

Chris spent half of the evening with Ben and Alex going out to dinner and then watching and cheering on a basketball game in the other room while I cuddled with Wynnie in the family room.  I don't know what game they were watching but it sounded like a sports bar atmosphere with those 3 so it was nice to hear the laughter and hoopla they were having together.  All evening Marcia aka Gigi was entertaining and taking care of Dori in the room with me.

This was taken sometime between 6-8 PM last night... Dori was laughing while we has giving Wynnie kisses.

Around 8:45 pm when we were attempting to send Ben and Alex to bed, they were trying their usual "can we stay up for five more minutes" plea.  Alex brushed his teeth and kissed Wynnie goodnight while he waited for Ben to go upstairs to sleep.  Random fact: Ben is scared to sleep in his room by himself now that Alex has "moved out" of Ben's room and into his new room (Viktoria's old room).  Therefore they have "sleepovers" every single night so Ben won't be afraid.   At bedtime we'll hear them ask one another "you wanna have a sleep over in my room or your room tonight?" as they walk up the stairs.

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.

Near 9:30 pm I gave Wynnie a breathing treatment and it didn't settle well with him.  His O2 stats dropped and he was doing a sad silent cry with his mouth very open.  I quickly put him down, ran to the kitchen and measured out a medium dose of morphine to calm him down and help him focus back on breathing instead of what had troubled him.  I called Chris into the room and told him Wynnie looked sad and was crying, so Chris held him for a while and was able to calm him down while singing to him and get him to make his 02 levels go back up.  Once Wynnie had stabilized Chris went back into the other room.  Then after that everything happened so quickly I don't remember the timeline of things.

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.

Tuesday, December 2, 2014

Being Prayerful

"Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." -Philippians 4:6-7

Thanksgiving was a hit as we hosted "Friendsgiving" with our friends the Caracalas family down the street.  Dori had a fun time entertaining the adults and Wynnie had special bonding time with Ty and his mama while they snuggled with him on the floor.  Chris did a fantastic job making TWO turkeys (one smoked, one oven baked) and a baked ham.  The kids all had fun playing around all day together.  Chris's baby project of finishing up our home bar finally was "unveiled" at Thanksgiving so we decided to "break it in" and we did a very good job at that. 

Over the past couple of weeks Wynnie has been working real hard at breathing.  He has lost a little bit of weight and now requires being on his bipap mask 24 hours a day in order to maintain his O2 levels as high as he can make it go.  He gets it off quickly for baths and feeding but he has decided to not fall victim to holiday weight gain so he's been eating a little less and snuggling a lot more.  So we have to be more "efficient" at his feedings to keep his belly happy.  

Our doctors, nurses and hospice agency have been wonderful at accommodating medication changes, medical equipment requests and respite.  They have bee open to our suggestions from stuff we find on Google (how did we ever survive before GOOGLE?!?).  Thankfully our doctors and hospice agency have been willing to dig deep in their "bag of tricks" to help open up his lungs in keeping our concerns and parameters in mind.  "Team Wynnie" is in full force and instead of worrying, we are focusing our energy on ensuring he feels loved and safe and being prayerful that he continues to turn the corner in the right direction over the next week or so. On occasion we have been giving him morphine and lorazapram (sp?) to help with any pain or anxiety he might be feeling.  I wish they'd make automatic "mommy and me" prescriptions of those narcotics so I could take a shot when Wynnie takes some too ala Karen Walker on Will and Grace.  (Bad joke, I know.) 

In the meantime, thanks to all our friends and neighbors who have come over and hung out with us to watch football, hosted Ben and Alex over for playdates and sleepovers, and have done fun things with Chris and I on adult nights out.  We are so THANKFUL to keep things as normal as possible for ALL our boys and (for our own sanity) keep things normal for us as Wynnie's parents. As long as Wynnie feels comfortable and feels our faith in him and our love for him, we hope that a loving and positive environment will foster an environment for healing.   

We all took turns watching Wynnie while the tree and Christmas lights went up on Friday and Saturday after Thanksgiving.  While hanging ornaments I could hear Ben in the other room with Wynnie.  It sounded like he was at a swimming championship competition.  I could hear Ben saying "come on Wynnie... you can do it!  Breathe harder.. get those numbers up!"  And when he'd lean in to give him a kiss Wynnie would bump up a couple of numbers and Ben would cheer and would run into the other room and say "I'm helping Wynnie get his numbers up!"  He's a coach at heart just like his Papi I suppose, it's been very cute.  

Thanks for keeping Team Wynnie in your prayers as we continue to cheer him on.  My mom always used to sing that song "Don't Worry Be Happy" when she would do housework and I find myself singing that to Wynnie too.  We'll keep being prayerful, positive and united for Team Wynnie.  I hope Wynnie understands how important of a warrior he is and how loved he is by so many people.  Go Wynnie!!  Good job buckey!!! 
Flashback Tuesday! :) I found this from June 2013.  Isn't he handsome!