Days to Remember

CMC Remembrance Ceremony 2015

I remember getting an invitation from Children’s Medical Center and the Palliative Care Team to their Remembrance Ceremony a few months after we lost our daughter, Ava Elaine Dickerson. We did not attend that first year. I’m sure I didn’t even talk to my husband or mom about it. Even though I truly appreciated the gesture and opportunity to share with other families, I was not ready. I was not as comfortable about crying in front people, especially strangers, as I am today. However, I did not realize five years ago that this room would not be filled with strangers. I may not know everyone’s name here, but I know now that names are not necessary.   We share in something so much more profound than names or where we live or where we work or how we were raised. We have lost a life that we cannot explain. For some of us that life is our child. For the rest, it’s your grandchild, your niece or nephew, your cousin or a friend’s family member. To those of you that are sitting here today in support of the people that lost their child, I want to thank you. I encourage you to continue to surround them with love and lift them up in prayer. Your support is crucial in facing their journey of living life without their child. Faith, family and friends: this is how we survive the saddest days of our lives.

We will celebrate Ava’s 5th birthday this month by releasing 5 pink balloons, lighting candles, singing happy birthday and eating cupcakes. We will talk about how she changed our lives forever. We will tell stories to our two living sons about their younger and older sister. We will soak in each other’s presence, love and laughter. Time will stop for a moment and my heart will feel like doing the same. I will remember holding Ava as she took her last breath in my arms. Although she never spoke a word, she remains my greatest teacher of faith, hope and love. We will receive cards, emails and texts from family and friends that remember her birthday. I will save them in a memory box and read them again and again on the days that hurt the most.  Like the days when I should be planning her next birthday party or having a fun conversation about what she wants to be for Halloween or seeing her Sunday School class that’s missing one child.

I would like to say that you being here today is a healing step in your grief process. Allow yourselves the space to remember and share your child’s life often. Listen to your spouse and the people that share in your loss; they will grieve differently and it is important to support each other.

Our daughter lived 47 days. The number forty-seven has become quite a significant sign from heaven and these signs continue to strengthen our faith and keep us anchored in hope.

In closing, I would like to share a story with you about our angel, Ava. Our sweet friends and neighbors, named their new racing horse Ava47, in memory of our daughter. Ava47 is a beautiful horse that captured my heart the moment I met her. Her pace is graceful and she takes long, powerful strides. Ava47’s first race was this past summer. She was the number 12 horse in the group racing.  As my mom and I were walking down to the grandstands, a young couple behind us mentioned that they had made a wager on Ava47. So, my mom let them know the horse was named in memory of her granddaughter and the woman answered back by saying that her best friend just had a baby and named her Ava. How sweet!

As the gates opened we all cheered for Ava47! Watching her race was mesmerizing. Ava47 did not place but hearing the announcer say, “here comes Ava Forty-Seven” over the intercom made me smile. As we walked back to our table, our friends and Ava47’s owners, ‘E and Lauren’ said with excitement, “did you see what horses placed 1st and 2nd?” They pointed to the screen on our table: The number 4 horse then the number 7 horse crossed the finish line 1st and 2nd.

Thank you, Children’s Medical Center, for hosting this time to allow us to share in the memories of our children. May the peace of Christ be with each of you, always.

Ava47

Ava47

Go Ava47!

Go Ava47!

1st place - 4 horse 2nd place- 7 horse

1st place – 4 horse
2nd place- 7 horse

Orchids and Angels

If you have read my book, Ava’s Story, you know Dr. Li Ern Chen.  She is an amazing person, surgeon and friend.  Li Ern is a photographer by hobby, capturing nature in the most beautiful ways.  For the last year she planned and hosted a fundraiser in which she sold her photos on canvas at The Kodner Gallery in St Louis.  Li Ern attended medical school and did her fellowship at Washington University St. Louis and one of her mentors, Dr. Kodner, owns the museum and also raises orchids in his greenhouse.  Many of her pictures were of his orchids and the fundraiser, ‘Through the Eye of a Surgeon’ benefited HateBrakers.  HateBrakers is a St. Louis-based non profit organization geared towards ending the hate-breeds-hate cycle through education, awareness and story sharing.  Todd and I decided to surprise Li Ern and attend her charity event.

Li Ern was at the front desk greeting her guests.  She was definitely surprised to see us!  We walked downstairs where her art was featured and admired her work as we mingled with Li Ern’s colleagues, friends and family.  Another one of Ava’s surgeons, Dr. Anne Fisher, walked up and gave us a big hug.  She has since moved from Children’s Medical Center in Dallas to Beaumont Children’s Hospital in Michigan where she is the Surgeon-in-Chief.  We told her all about Jackson and that we had faced CDH again.  As we were all catching up I began to see people hang tags with their names indicating that picture was purchased.  I was happy to see all the people supporting Li Ern and HateBrakers.

Todd and I were browsing Li Ern’s gallery and I thought I would pick one out as inspiration for redecorating my office.  One had initially caught my eye; Li Ern had captured a beautiful white orchid with deep purple, inner petals.  The flower was cropped up close and you could feel the soft texture of the flower with your eyes.  Todd pointed out a few other pictures that were just as stunning; it was so hard to decide.  However, I was still drawn to the white and purple orchid.  Todd said, “it’s your office, get the one you want!”  I didn’t realize each pictured was numbered with a small, indiscrete white sticker next to each canvas.  He asked me what number mine was so I walked towards it to look closely and as I viewed the number, the breathe escaped my lungs and my eyes filled with tears.  I looked at Todd as a tear ran down my face and he automatically knew it was number 47.  I gazed back at the picture and said a little prayer of thanks to God for revealing his miracles so graciously to me.  A few minutes later Todd handed me a tag that said, #47 Dickerson.  I proudly draped it over the picture.  I couldn’t wait to tell Li Ern!  By the time we left, most of her pictures had sold.  It was an amazing afternoon.

That evening we waited for our cab to take us to dinner.  A couple was waiting with us and the dad proudly told us he was on his way to his only daughter’s wedding.  We told him where our recommended dinner reservations were taking us and he said, “you have to go to Dominic’s on the hill. It’s the most romantic and best Italian in St. Louis.”  So, we changed course and headed to Dominic’s.  The Maitre D sat Todd and I at a cozy, candle-lit table in the corner.  “Your waitress for the evening will be right with you.  Her name is Ava.”

We landed the next evening just as the sun was setting.  There were storm clouds in the distance and guess what I saw as I looked out of the plane window?  A beautiful rainbow desending from heaven.  I was overwhelmed with peace and happiness.  It was the perfect ending to an extraordinary trip.

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The Light

It’s been over a year since I’ve written anything to publish. I’ve spent more time journal writing which can be very helpful while sifting through the layers of grief that losing loved ones can create. Most of my posts develop in my head over a few days.  Some thing or some event lingers within my thoughts and grows in my heart and inspires me to write.  So, please let me share with you a few things that happened last week.

I decided to pick Jackson up from school before doing my volunteer work at church for the week. Each week I put out the children’s bulletins for church service, update and organize the children’s worship bags.  Jackson had a fun-filled day at school with an egg hunt and special snacks that afternoon.  I pushed him along in the cart and we started in the sanctuary balcony which is lined with beautiful stained glass, arched windows.  The windows are adorned with pictures of God, Jesus, His Disciples and Angels.  I don’t think Jackson had been in the sanctuary since he was an infant.  Almost immediately he noticed and commented on the windows, “Look at the pretty windows, Mommy!”.  I asked him who he saw in the windows.  He replied, “I see God, Mommy”.  As we were walking to the other side of the balcony, he commented, “I see Jesus, Mommy”.  A few seconds later while looking away from the windows and up and out over the balcony he said a few more times, “I see Jesus, Mommy!”.  It was like he was trying to convince me he actually saw Jesus, not just in the stained glass window.  I didn’t realize it right away but when he started to softly sing, Jesus Loves Me, it hit me.  Chills ran up and down my body and an immense sense of peace filled my heart.  Jesus Loves Me is not one of ‘our songs’ but he had it down to every word and chord.  I’m sure his wonderful teachers at school sing to him.  To hear Jackson sing the words of that sweet hymn brought me back to the very basics.  Yes, Jesus does love you, and me and everyone.  He Loves All.

Fast forward to bedtime that same evening.  Jackson and I are in the playroom filled with toys.  I asked him to pick one toy to bring to bed and then told him it was time to go ‘nite nite’.  Normally, he would start negotiating with “two more minutes” or “one more story”.   Not this night.  He stood up, walked out of the playroom and went directly to a side table in the hallway that has pictures and family mementos on it.  He pointed to a toy that belonged to my cousin, Billy.  “I want that toy, Mommy.” So I helped him get the toy off the table and tucked him snugly into bed.  As I walked out of his room he played with Billy’s toy that makes chiming sounds as you turn the circles.  Billy and I were best buds growing up and his Mom, Aunt Lori, gave me this toy during a special time in my life (note for another post).  Billy died in a tragic car accident when he was 30 years old and left behind a little girl.  Aunt Lori and I share that unfortunate bond of mothers that know how it feels to lose a child. She’s an amazing women:  strong, faithful, kind, thoughtful.  Aunt Lori and Billy possess these same wonderful attributes.  It was a heartwarming moment.

I retired to Todd’s office to do some work while he and Jason were still out at a basketball game.  I have Jackson’s baby monitor on my phone in an app.  I turned the monitor on and began to work. I immediately noticed a glowing circle of light by his crib and figured it was a reflection or glare on the screen.  Several minutes later I noticed it had slightly moved.  I sent a text to my mom and asked her to log onto Jackson’s monitor (Gaga and Papa have the same app) and take a look to see if she saw the same thing.  A few minutes later she sent a message back saying she could see the glowing light. I called her to tell her about the events that had happened earlier that day in the sanctuary and also with Billy’s toy.  We decided I should go into his room and check things out and that she would watch from her phone.  I entered his room and found nothing.  I saw no reflection, glare or light.  I walked around, moved the monitor and brushed off the screen.  When I called my mom back she said I walked directly through the light.  I logged back on and the glowing light was still there but had continued to move down and now had created a tail.  I took several screen shots from the app.  I tried to continue to work and my mom said she would continue to watch the light.

About an hour later she sent me a text, “The light is gone.”

My reply, “The light is always present.  We were just blessed to be able to see it tonight.”

I wonder if Jackson really did see Jesus in the sanctuary?   Was that Billy or Jackson’s sibling angels in his room watching over him?  I think so.  I believe.  I believe that children’s minds are so innocent, free from negativity, sadness and the ugly that encompasses our world.  Children can see the light because all they know is good.  And God is so good.

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Three years removed from my arms

On special Ava days, like today, I wake up wondering — almost anxious — if I will see signs from her. I am amazed at how strong our bond is even though I can count on one hand how many times I got to hold her in my arms.

Tonight, I am thankful for 3 special cards I received today. Tonight, we remember Ava, leaving us for her eternal life 3 years ago.

My Aunt Lori sent a sweet birthday card that arrived early — even with the icy weather we’ve had it got here overnight. I received an acknowledgement card today from a special friend’s parents. I’ve only met them once but they placed a poinsettia in their church sanctuary in loving memory of JT, Jr. My third card is from Todd. JT, Sr. He’s not a card giver but when I woke up from my nap there was a card addressed to ‘My Love’. It brought me to tears.

3 unexpected cards on her 3 year angelversary.

I love you, too, Sweet Ava. Fly high, my angel.

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A Family Portrait

I want JT to hear the ocean waves.  I want to sit in the sand where the waves withdraw from under my feet, taking with them my heartache.

I woke up the next morning after what would be our last doctor’s appointment to evaluate JT’s CDH and knew we should take a family trip to the beach.  I find peace in the consistent break and roll of the waves.  When I see the moon’s glow reflecting off the dark water it reminds me there is always hope.  So, we planned our trip and were in Galveston a few weeks later.  I thought we should take family pictures to capture this special time together with JT.  My mom reminded me to pack Ava’s pink bear so she could be present with us in the pictures.

We set out in the early evening to meet the photographer.  As we were leaving the beach house I realized I left Ava’s bear at home.  I was sad but Todd reminded me she’s always in our hearts.  The photographer asked us to meet on the boardwalk in the middle of town and said we could walk down to the beach together — she knew a perfect spot.  After taking several pictures I turned around and saw a lifeguard stand.  It was numbered.  We were taking pictures in front of lifeguard stand 47.  Ava, and now JT, are always in our hearts.  We may not always be able to see our angels.  But Ava made sure she was present in our family pictures.

Mommy, Daddy, Jason, Jackson, JT and our life guard, Ava.  All together.

A perfect family portrait.

Lifeguard stand 47

Lifeguard stand 47

Angels Among Us…

I am sharing from my Facebook page, ’47 Days of Inspiration’, for my family and friends not on fb.  I posted this last week and will continue to post inspiring stories throughout the 47 days from October 22 – December 7.

 

I believe there are angels among us. I believe Ava watches over us and protects us. I believe she sends signs that she’s dancing in heaven. I believe she sends signs when she’s present among us. I believe Ava has taught her little angel brother , JT Jr., to do the same. Right after JT went to heaven I prayed while I held him in my arms. With tears streaming down my face, I prayed that he was with his big sister, Ava, and that she would teach him to send signs to us. I knew in my heart he was in the kingdom of God. But when these signs happen, it’s heartwarming and sometimes breathtaking. It strengthens my faith and allows for peace and hope to take over my grief and heartbreak. The day of JT Jr.’s funeral I received an email from Shawna, our photographer from Now I Lay Me Down to Sleep. It’s an organization of volunteer photographers that will come to the hospital after an infant loss to take precious pictures. She sent me the link to our photos. I clicked and opened the first photo. I noticed I was viewing ‘1 of 47’. Shawna took 47 pictures that day in the hospital. Tonight I am sharing with you picture 47 of 47. I believe there are angels among us. Ava and JT Jr. are a few of them.

James_047

 

If our love could have saved you, you would have lived with us forever.

Dear Family and Friends,

I’m writing with a broken heart to let you know James Todd Dickerson, Jr. was born Thursday, August 29 at 5:30AM and passed away peacefully in my arms at 6:05AM. He weighed 5 pounds 4.2 ounces and was 18 1/4 inches long.

We were admitted to the hospital Wednesday night and Todd and we had a few hours to prepare our minds that our son would be born soon. Our hearts could never be prepared, even with more time. Todd held my hand through labor and as my contractions grew closer and stronger the pain subsided. Thanks to my sister for watching Jackson, I had my Mom on my left and Todd on my right. Dr. Lo turned the bright lights off and we all took deep breaths between contractions. Right before the last one I prayed out loud, “Lord, please be with JT as he enters the world and give him the chance to breathe. If you take him from us, please have his angel sister and Jesus wrap their love around him and protect him.” Dr. Lo put him in my arms and he laid on my chest. I wrapped my hand around his tiny body and could feel his heart beating with my fingers. It was beautiful and peaceful. We all talked to him, sang to him and loved and kissed him.

All he ever knew was love. I have faith he is with his sister Ava and I have faith I will join him in heaven again someday. JT’s sweet spirit will be in my heart forever.

Todd and I have spent the last few days to ourselves to take in everything that has happened. We appreciate the love, prayers and support from all of our family and friends.

Love and Peace,

Jennifer

http://www.legacy.com/obituaries/dallasmorningnews/obituary.aspx?n=james-todd-dickerson&pid=166720742

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Slow Down, I’m not ready…

Dear Family and Friends,

I wanted to update everyone and let you know I have gone into the early stages of labor. I started contracting last night and spent most of the day in labor and delivery trying to slow things down. We are back home now but the contractions are getting stronger and closer together. I’m only 34 weeks — I carried Ava and Jackson to 39 so this is very unexpected by everyone. I am scared, anxious and a little frazzled.

I’m not ready physically or mentally. I have a ‘To Do’ list here that I just started. The monogrammed outfit and blanket are not here yet. Our family is not in town yet. Please JT, slow down, Mommy is not ready. I’m not ready to say goodbye.

We are praying for peace and a miracle. I pray that God gives JT his chance to breathe. I will try and update everyone as things progress.

Love,

Jennifer

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Impossible Decisions

Dear Family and Friends,

I wanted to update everyone on some recent consults and tests we’ve had with JT. Todd and I went back to Houston for further consult, the family meeting we never had before, at the beginning of July. Fetal surgery was still being considered by the doctors and the fetal review board. During our family consult we received so much more information about the severity of JT’s condition, risks and possible outcomes. Unfortunately, we are talking about statistics gathered by few bi-lateral hernia cases since they are so uncommon. JT’s condition was classified as lethal. I kept thinking, couldn’t they come up with a better word? At best case scenario, they could expect fetal surgery to double the size of his lungs. So, it could bring him from 11% estimated lung volume to 22% which is still classified as severe. We would be required to stay and deliver in Houston which meant months to possibly a year in the hospital. Our consult lasted about two hours and we had questions answered and support given by expert CDH doctors from around the world. It was informative and we needed to hear these details. We had the following week to make our decision, again, about fetal surgery. That weekend Todd thought we should have one more MRI in Dallas to see where lung volume was 4 weeks after our last MRI. If his lungs had grown we would move forward with fetal surgery. We had counseled with our pastor and found some peace and comfort in his words. We will have all the information we need to make this big decision for our family, for JT.

The following week we were once again going over MRI results with Dr. Twickler. She could not identify any lung tissue on the left and estimated only 6% lung volume on the right side. Tears were shed by all 3 of us. It was quiet in the dark room that displayed images of JT across computer monitors. There was not much to say. Our hearts were breaking as our minds tried to wrap around, why, why, why?

As sad as the test results were and as hard as it is to think about the severity of his condition, I went to bed that night somewhat relieved. Relieved that we made the right decision, although an almost impossible one, for JT. I let go of the anxiousness I had been living with since we found out JT had CDH. I told Todd the next day I wanted to enjoy the rest of our pregnancy and time together with JT. I want JT to hear his brothers laughing as much as possible. I want JT to hear the ocean. We are headed with the boys and my parents to Galveston next week. I pray with JT, I sing to JT and I talk to him to let him know we will always be together. If I cannot hold you in my arms for long, I promise I will hold you in my heart forever.

We had an appointment today with Dr. Lo, who will be delivering JT. She’s a dear friend and will hold our hands through this process. We talked about some details of comfort care at delivery. I don’t think I can write about those right now. We choose a special date of October 2nd for induction. My Grandfather, Willis, and Great Uncle William were born on October 2nd.

We sincerely appreciate the continued support and prayers from our family and friends. A card, phone call, text or inspirational gift will arrive at just the right moments. Even a neighbor on my doorstep to spend a few hours talking about nothing and everything can keep my chin up. Todd and I are truly blessed with the most thoughtful, generous and kind family and friends.

Love to each of you,

Jennifer

Never Lose Hope

I wanted to let everyone know that we will not be going to Houston for fetal surgery. Our hearts are heavy. I have been thinking the past two weeks of some advice dear friends gave us on our CDH journey with Ava…Never lose hope, but don’t let it cloud the reality of the situation.

We have not and will not lose hope. We will continue to pray for a miracle.

Our family vacation to the lake could not have come at a better time. We are about two hours into our road trip and about 20 miles from home! I am exactly where I want to be with Todd and our 3 boys by my side. And I’m sure our angel is watching over all of us as our family travels in from all over the country.

Love and Peace,

Jennifer