Keeping Their Memory Alive: Mikayla and Chase’s Stockings


DSC_0383-1We are coming up on the fifth Christmas since we lost our daughter Mikayla and the fourth since we lost our son Chase.  Newly bereaved parents have expressed how difficult the holidays can be for them, but even several years out from my loss there is always this sense of wonder when I watch my two living children enjoying the gifts and blessings of the Christmas season as I let my thoughts wander to what it would be like if all four of my children were here on earth with us. I remember that first Christmas all to well, it was so difficult to find joy amongst the grief.

I did find something that gave me hope though, something that gave me purpose…we called it Mikayla’s Stocking.  The last several years, of course, it was Mikayla and Chase’s Stockings, and we hope to do a version of it year as well.  This idea helped us  immensely during the holidays and I am sharing it now in hopes that if you are a bereaved parent yourself, it might spark some ideas of how you could do something in memory of your baby.  If you aren’t a bereaved parent, but know someone who is, I hope this will encourage you to reach out to that family during this holiday season.  See the bottom of this post for other resources that may help.

The thought of not having a stocking for Mikayla to hang with the rest of our family stockings was heartbreaking.  We could not stand the thought of that stocking hanging there empty on Christmas day…so we decided to fill it with good deeds and acts of kindness in Mikayla’s name that we spent time doing during the holiday season.  The idea was inspired by a fellow baby loss blogger, Mattie, in memory of her daugther Shyla.

It started by a letter that was sent out to our family and friends inviting them to join us in filling Mikayla’s Stocking with stories of good deeds and random acts of kindness they were inspired to do in her memory.  We then picked out a matching stocking with her name embroidered on it, and each day afterwards we thought of small things we could do to spread joy amongst our community and to help others days be a bit brighter.

Sure, there were lots of tears that first year…and sometimes there still is when I think about how very different our lives could be if Mikayla hadn’t died that year.  But keeping focused on doing things that would make her proud to call me mommy helped me survive those first holidays without her.

This was part of a blog post I wrote about her stocking that first year,

“Instead of hanging our four stockings on the mantle, with excitement for what little treasures might fill them on Christmas day,  I hang them with tears in my eyes.  Mikayla has a stocking, I cannot imagine it any other way.  I love seeing her stocking hung up with the rest of ours, our little family of four.  Instead of a doll dressed in pink, Mikayla’s stocking is adorned with an angel.  Instead of filling it with toys, I am filling it with letters from our friends and family that we will read on Christmas day to try to bring a little joy to that stocking that would otherwise be empty.”

We asked people to send us notes about what they did in these acts of kindness so that we could put them in the stocking.  We didn’t open them as we received them, we just tucked them inside her stocking.  On Christmas Day morning, we opened up all of the letters.  And that stocking was not empty on Christmas morning….it was overflowing with LOVE.

This project brought a lot of joy to our family during one of the saddest Christmas holidays we have ever celebrated.   We were absolutely awed at the letters and notes that were sent to us to fill her stocking.   I remember going to the mail box and each new envelope labeled with “Mikayla’s Stocking” filled me with such joy….someone remembered, someone cared.  For me, that’s all I really wanted for Christmas that year.  And if by trying to keep the spirit of my daughter alive, it helped brighten the spirit of even one person, I knew it was worth it.  I guess it’s how I grieve.  It helps me to know her short life had a purpose and that it continues to impact others.

It’s now been several years and I’ll admit I feel a lot less sad about the approaching holidays this year.  We have been so blessed this year, but I do still find myself wondering what it would be like with four little kids running around our house.  I don’t let my mind linger there for long though.  Instead I find myself planning how we are going to honor Mikayla and Chase this holiday season.

DSC_0152

DSC_0156Below are examples of our Letter from the first Christmas and also the one we sent the second year.  Please feel free to use these to draft your own letter if you’d like to invite your family and friends to fill your child’s stocking this Christmas.  If you do your own Angel Stockings, we’d love to hear your stories!

{YEAR ONE LETTER}

Dear Family & Friends,

First, let me thank you all for your love, support and prayers over the six months.  Thank you for sharing in the excitement of our second pregnancy and in the sorrow of our loss. Today is Nov 14.  Tomorrow will be 5 months since we said good-bye to Mikayla. We know each one of you felt our pain during the loss of Mikayla. We celebrate her life and, like a stone tossed into a pond, hope to see some of the far reaching ripples of the good things her life can bring.

As the holidays are approaching, we are excited to spend time with family and friends and watching the excitement in Jonathan’s eyes just overwhelms our hearts sometimes. But, we still feel the need to remember our daughter, Mikayla, this Christmas. Christmas is our favorite time of year and we have been searching for a way to keep it that way, even in the midst of our pain.  I found this wonderful idea from another mom whose little girl is in Heaven and was really inspired to do the same thing she did the first Christmas without her baby.

We have a stocking monogrammed with Mikayla’s name that matches the rest of our family stockings, but really don’t want to see it hang empty, so we have decided to enlist all of you to help us.  All that we ask is that sometime between now and Christmas, do something nice for someone, no matter how small or large. It doesn’t have to involve money–just commit a random act of kindness. When you do it, think of Mikayla and dedicate that act her. You can even leave a note saying, “This random act of kindness was done in memory of Mikayla Grace”, but you don’t have to. 

Please write down your act of kindness and send it to us and put “Mikayla’s Stocking” in the subject line or slip a note into your Christmas cards to us. I won’t read it. I will print it out the emails and put it in her stocking. Then, on Christmas morning, we will open up all the notes and read them. 

Feel free to share this request with your other friends and family.  Even if only a few of you do this, we will have a really beautiful thing to share on Christmas in our sweet baby’s memory and someone else (the recipient of your kindness) will benefit by a true example of the spirit of Christmas. I will pray that all of us will be struck by inspiration, that something will come to each of us, some kindness that we can share of ourselves, in Mikayla’s name and in her memory, to benefit someone else.   For idea’s and inspiration for random acts of kindness, visit http://www.missfoundation.org/kindness/ideas.html 

Thank you so much for your participation and your continued love and support,

Melissa, Mike, and Jonathan

 

{YEAR TWO LETTER}

Dear Family & Friends,

We are so, so thankful for our family and friends who have supported us over this last year and wanted to invite you all to do some random acts of kindness this Holiday season!  Last Christmas we invited many of our family and friends to participate with us in filling Mikayla’s Stocking with Random Acts of Kindness done in her memory, and we have decided to do something similar this year as well. It was such a wonderful experience for us and those that participated, helping us focus on the blessings we do have and the kindness of others.  

As most of you know, 2011 started out as the year of {HOPE} as we discovered we were expecting our third child. Unfortunately at a routine ultrasound on April 22, 2011 we were told that our baby had no heartbeat. While we were only 10 weeks along in this third pregnancy, we had already fallen in love with this child and our hearts were broken to know that he had already joined his sister Mikayla in Heaven. We felt our lives open to a whole different kind of loss, because while we felt this life was already our child, there simply wasn’t enough time to convince others how special this baby was or to share our hopes and dreams of this child with them. A few weeks after we lost him, we got the genetic results back that our baby was a little boy who died from Trisomy 22. We have named him Chase Gabriel, and while we never got to hold him in our arms he still remains within our hearts forever.

Last year if you’d told us that we’d be hanging up yet another stocking in memory of one of our children we wouldn’t have believed it. We know this too will be a difficult holiday without our two children, and we are searching for ways to bring joy to our lives and the lives of others again this year. We celebrate the life of both Mikayla and Chase, and hope we are able to continue to find ways in which the lives of others can be touched because of their brief lives touching ours. 

This year, we will be filling stockings again and if you’d like to participate, we ask that the acts of kindness are done with both Mikayla and Chase in mind. Sometime between now and Christmas, do something nice for someone, no matter how small or large. It doesn’t have to involve money–just commit a random act of kindness. When you do it, think of our children and dedicate that act to them. You can even leave a note saying, “This random act of kindness was done in memory of Mikayla Grace and Chase Gabriel”, but you don’t have to.

Here are some ideas:

  • Take your neighbor, friend, coworker some cookies
  • Make someone a meal
  • Compliment someone
  • Shovel someone’s driveway or sidewalk
  • Let someone cut in front of you in line at the store
  • Buy someone a cup of coffee
  • Donate money to any charity
  • Donate toys to the Salvation Army
  • Adopt a family with a one year old or a baby (Mikayla would have been 1 1/2 this year and Chase was due to arrive in November)
  • Buy someone who is hungry lunch
  • Volunteer at a homeless shelter serving dinner
  • Volunteer anywhere

 There are so many ways to spread kindness and cheer this holiday season check out this website for more ideas: http://www.missfoundation.org/kindness/ideas.html

Please write down your act of kindness and send it to us by mail (email me at mikaylasgrace@gmail.com if you need my address) or email and put “Mikayla and Chase’s Stockings” in the subject line or slip a note into your Christmas cards to us. We won’t read it. We will print out the emails and put them in the stockings. Then, on Christmas morning, we will open up all the notes and read them.

Feel free to share this request with your other friends and family. Even if only a few of you do this, we will have a really beautiful thing to share on Christmas in memory of Mikayla and Chase and someone else (the recipient of your kindness) will benefit by a true example of the spirit of Christmas. I will pray that all of us will be struck by inspiration, that something will come to each of us, some kindness that we can share of ourselves, in Mikayla and Chase’s names, to benefit someone else.

Mikayla and Chase are on our minds daily and now to see them, instead of opening our eyes, we must open our hearts. We do believe that they both came into our lives to bring us the gifts we needed to continue touching lives through sharing our experience with others. They have taught us about love and about giving. They taught us all of that, and then they left. Through us, and through you, their gifts will live on through the lives of others touched by the mission of Mikayla’s Grace and our acts of kindness for many years to come.

Thank you so much for your continued love and support,

Melissa, Mike, and Jonathan

And our two little angels watching over us in Heaven, Mikayla & Chase

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“No act of kindness, 

no matter how small, 

is ever wasted.”

 Aesop

There are a couple of other good resources for how to survive the holidays after losing a baby.  These blog posts may be helpful for family and friends of bereaved parents to read as well.  We wish all of our supporters of Mikayla’s Grace a peaceful holiday season.

http://facesofloss.com/real-advice/surviving-the-holidays

http://www.roseandherlily.com/2012/11/remembering-your-baby-at-christmas.html

If you are a bereaved parent and have other ideas how you honor the memory of your baby(ies) please share them in a comment to this post.

Neonatal Intensive Care Awareness Month: Guest Post, Rory’s Mom Amy Jesse

What I’ve Learned During the Journey to Become Rory’s Mom

Growing up I knew one thing for sure – I wanted to be a mom. Whenever someone asked me what I wanted to be, mom was at the top of my list. I spent a lot of time imagining myself as a wife and mother, but it turns out my journey to motherhood would not be an easy one.

Rory at 2 weeks – 1st Kangaroo Care (Christmas Day 2012)

Rory at 2 weeks – 1st Kangaroo Care (Christmas Day 2012)

My challenges started with a few years of infertility. When I finally got pregnant, I was plagued by a very small blood clot that formed in the placenta that would periodically produce large amounts of bleeding. Each time I bled I was convinced I was pregnant no more. I was crippled by anxiety. I tried to convince myself that this baby was the one we were meant to have, that he was already a miracle because he came to us after we’d given up hope. After my first trimester, the bleeding stopped and I started to feel pregnant. At 16 weeks I was lucky enough to start feeling movement. Our baby was really there! We were so excited for our 20-week ultrasound. Our excitement was quickly replaced by fear. The technician and Maternal Fetal Medicine (MFM) doctor spent a lot of time pouring over the image on the screen. Pointing, discussing, wondering…was my cervix starting to open? They determined it was closed and I was put on progesterone to keep it that way. Hopefully. During my 22nd week I saw both my OB and the MFM doctor. Both determined that things were still fine, but because I was measuring very short, I’d be looking at bedrest if things changed. On the day my pregnancy calendar changed to 23 weeks, my life changed forever.

I was starting to dilate. Even as I type those words now, I can’t believe them. At 23 weeks, my baby was coming. 17 weeks early. We had decided not to take extraordinary measures during delivery. If he survived the birth and showed signs of life, then we wanted them to save him. Thankfully we were at a hospital that would do so. I am frequently heartbroken by stories from those who delivered at hospitals that would not take a chance on a 23-weeker.

Rory on Day 133 – day before discharge!

Rory on Day 133 – day before discharge!

At 23w2d my son was born. That was the day I became Rory’s mom. He had a prolapsed cord, but he made it through. My little miracle. What a fighter he is. He fought for breath. He fought through NEC (potentially fatal intestinal disease) and two surgeries. He fought through a PDA (a hole in the heart that is typically closed by the time a full-term baby is born). He fought through ROP (exposure to oxygen causes the blood vessels in the eyes to grow rapidly). He learned how to suck, swallow and breathe. He learned how to be okay with stimulation. He rarely cried. He charmed the NICU staff. He fought hard for 134 days to come home with us. What an amazing day that was. Now he’s 21 months. I still can’t believe he’s a toddler.

Now it’s my turn to fight. After our lives have settled down and we learn to cope with a toddler, my troubles have taken over. In recent weeks I’ve found myself plagued with anxiety, depression, and PTSD. I try to focus on my son and how fortunate we are. I tell myself this every day. But guess what? It doesn’t erase it. It doesn’t erase the trauma we went through before and after he was born. It doesn’t erase those guilty feelings. You know the ones I’m talking about. The ones where you wonder if you could have done more. The ones where you mourn your pregnancy and you feel angst or jealousy related to your pregnant friends. The ones where you feel like your body completely failed your baby. It doesn’t erase the constant worry. No matter how thankful I am. No matter how much I want to be in the moment with my son, no matter how many times I kiss him and hug him and tell him I love him. No matter how proud of him I am…it’s there. Those fears, that anxiety, that lingering sadness, those flashbacks. Oh, those flashbacks. I’m getting help to deal with the challenges I’m facing because I want to be the best mom I can be to the son who fought so hard to survive.

Rory's 1st family vacation – August 2014

Rory’s 1st family vacation – August 2014

NICU Parents need to know that the trauma they experienced is real. They need to know that everything they feel is okay. They need to be given resources to help deal with what they have been through. They need to know that just because they are lucky enough to walk out of the hospital with their baby, their worries aren’t over. If they want it, they need to be able to be part of a network of families who can relate to their NICU journey. Because as much as family and friends love you, they don’t understand lockdown, obsessive hand washing and sanitizer use, and your reluctance to have them come to visit. A fellow micro preemie mom and I have started a NICU parent support group in our area for exactly these reasons. We are committed to providing a community where NICU parents fit in, where they can get the support they need, no matter where they are in their journey. Our hope is that families everywhere have access to similar support. NICU families don’t just need support from other parents. They need it from everyone around them.

If you are not a NICU parent, but want to know how you can help, here are a few ways.

  1. Set up a meal drop off schedule. Reach out to anyone and everyone you can think of and then pick people who might not help and contact them too. We received donations from people I wouldn’t have expected. People left food on our porch, in our garage fridge, and even in our mailbox. After spending all day at the hospital it was so nice to come home and be able to eat.
  2. Offer to help with child or pet care. Our neighbors would let our dog out so we wouldn’t have to rush home. Family would come take our dog for a week at a time which was especially helpful around surgeries, bad weather, etc.
  3. If you ask to visit the NICU, be prepared to be told no. There were some days we didn’t know hour to hour how our son was going to do and visitors were an additional stressor. If you are approved to visit, bring food! Our cafeteria food was tolerable at best.
  4. Don’t question a NICU parent’s request for you to wash and sanitize your hands, change your shirt, not smoke, etc. We are not simply being overprotective. We are following doctor’s orders, hospital procedure, and are just trying to keep our baby healthy. A common cold for you and I can be life threatening for a NICU baby.
  5. If you ask for an update or send well wishes and don’t hear back, don’t take offense or assume the worst. There are days when 15 people might be doing the same thing and there’s just not time or energy to respond.
  6. Just listen. This is a terrifying time for many NICU parents. Please avoid comments such as, “Everything happens for a reason” or “Everything is fine now that you’re home, right? At least you don’t have to worry anymore” or “At least you didn’t have to get big and fat.” These are just a few examples. If you aren’t sure what to say, please just listen.

We are often asked how to give back to the NICU that provided such amazing care.

  1.  Ask your NICU if they have a wish list. Consider asking for NICU donations in lieu of birthday gifts.
  2. Send cards to the NICU with photos of your little one(s).
  3. Write a heartfelt thank you note to the staff to let them know how much you appreciate them. It takes a village to raise a child and they will always be part of yours.
  4. We hear this most often from hospital staff…VISIT! It can be tough to go back, but it’s incredibly rewarding for the staff to see how well your little one is doing thanks to the care they received from all those wonderful doctors and nurses. We all know that what they do is incredibly worthwhile, but they need to be reminded. They have really hard jobs!

No matter how much research is done with the intention of preventing NICU stays, there will always be babies who arrive early or have challenges at birth. Often there is no reason. There will always be NICU families and NICU staff that need us, all of us.

Amy Jesse (NICU Co-coordinator for Mikayla’s Grace and Co-founder of Wisconsin NICU Parents)

Donation of CuddleCot System for Infant Loss Families at Meriter Hospital

Cuddle_Cot_BannerMikayla’s Grace has partnered with Babies Gone Too Soon to provide a donation of a CuddleCot System for Meriter Hospital.  This unit will be one of the only ones used currently in the United States, although they are used extensively in other countries.  We are excited to be able to bring something to our local hospitals that will improve patient experience and give them more time with their babies when they experience an infant loss.

The cost of providing this unit to one hospital is $3000.  If you would like to donate to help provide this unit and ones to future hospitals, please donate through this button below and put CuddleCot in the donation comments.  We know with your support we can continue finding ways to comfort bereaved parents!




This info from Flexmort’s Website on the CuddleCot:

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Dealing with the death of a baby is clearly an incredibly difficult event for parents and bereaved parents should be given the option of spending Time with their baby. Providing families Time is internationally encouraged by midwives, bereavement practitioners, still birth/neonatal charities, academics and is also recognised in International Position statements/guidance. Time allows the family to form an important bond with their baby; whether changing a nappy, dressing the baby or simply just to stay close this can help families in dealing with their loss. The problem is that in a warm room the baby’s condition can deteriorate quickly which parents often find distressing. Therefore cooling the baby is absolutely essential, however parents do not want the trauma of being separated from their baby whilst they are placed into a mortuary refrigerator to cool.

How does the CuddleCot™ help?


The CuddleCot™ system cools the baby in situ allowing the baby to remain with the family thereby providing the family time they want. The CuddleCot™ cooling pad is placed in any moses basket, crib, pram or bed; it is connected by a specially insulated hose and is quietly cooled using the CuddleCot™ cooling unit. The CuddleCot™ system comes in its own carry case and Flexmort’s moses baskets are also available as an option.

The benefits of using the Flexmort CuddleCot™ system in helping a family deal with bereavement are widely accepted across the globe and the system is in worldwide use across maternity departments and children’s hospices e.g United Kingdom, Australia, Canada and the US. Please see testimonials at the bottom of this page. The CuddleCot™ meets the rigorous hospital equipment applicable standards for use within hospital environments across the world and our UK premises are inspected regularly by the relevant organisations who issue certification/approvals.

Here is one mom’s testimonial of using the CuddleCot:

“We HAD to spend as much time with him as we possibly could because once we let him go we would never see him again.  I came to find out weeks later that this chilled Moses Basket was one of two Cuddle Cots in the U.S. and we had the great fortune to have access to one. It was discreet and quiet and the Moses basket beautifully masked the chilling pad.

The Cuddle Cot gave us the irreplaceable gift of time. We all have limited time on earth with our loved ones but when decades are condensed into hours every extra minute is precious and necessary. We were granted time in a quiet and private place (after all of the drama of delivery) to say goodbye to our child (and all of the dreams we had for him). We were granted time to just look at him and memorize as best as we could his beautiful form. We were granted time to call our families so they could come and visit us and spend the time they needed to both meet him and say goodbye to him. Humans aren’t hardwired to accept birth and death in one day. It’s not natural. It’s unfair. It’s so many indescribable things. Families that have to suffer this agonizing experience should be treated with as much compassion and time as possible.

Most parents are blessed to have many memories and experiences with their children to reminisce over on nights when they’re missing them. The only experience I will ever have with my son is the time I spent with him in the hospital after delivery. Having access to a Cuddle Cot gave me the opportunity to spend several uninterrupted hours with him so that I might carry that ONE and ONLY memory of him with me for the rest of the days of my life.”

Here are some videos showing more: