It was a cold, blustery, January day in New England, yet our spirits were high as we stripped wallpaper and painted walls to freshen up our kids newly purchased first home. It was just perfect for their growing family; complete with a room dressed in pink for my 2 year old granddaughter, plus a nursery for the little one on the way.
Though exhausted from the tasks at hand, we were driven with anticipation and excitement
of the upcoming moving day that weekend. In the midst of the day there would be an OB appointment – seemingly just a regularly scheduled appointment that gave none of us any reason for pause. However, within a few hours our hearts and minds would be in upheaval at the report from that appointment there was cause for concern for the wee babe – my second grandchild – who my daughter- in-love was carrying.
The next few days were a blur filled with specialist appointments and waiting for test results that left our stomachs in knots, all while moving our children into their long awaited goal of their first home. When Monday morning dawned we received the news; test results revealed the baby had full Trisomy 13.
Lori Peterson, pictured holding her grand-daughter, BNA Baby Erica Joy.
As a Mimi and a Mom, both roles I deeply cherish, I can only describe the feeling I had as anguish. Anguish for my granddaughter, who already had a spot in my heart and I loved dearly, though only 12 weeks in the womb. Anguish, likewise, for my children, in seeing their hearts torn at the relayed news, and me not being able to fix it – after all, as a mom, this was what I longed to do!
My mind was filled with prayers and pleading to God on behalf of my granddaughter and my children – I held nothing back – asking for grace, mercy, and yes, even miraculous healing. I desperately wanted to know how to love and support my kids best. They in turn loved their baby girl whose long term future, they were told, was very grim.
I, nor anyone I knew well, had ever heard of Trisomy 13 until this point. For the next several nights – into the wee hours – I researched, Googled, and prayed for God to give insight and lead me to resources and help as I, and the rest of our family, journeyed alongside our children. Through this process God lead me to find the Be Not Afraid website.
There was one seemingly big problem, however. Be Not Afraid was in the south and I and my children lived in New England, which are many miles apart. It seemed like a long shot in getting help from that far away, but I was desperate after looking for hours, finding nothing even close to resembling it near me. I filled out their contact page and within hours had received a reply which asked if we could connect by phone. Within a day or two I was on the phone with a Peer Minister.
I remember entering the conversation with an overwhelming sense of fear, hopelessness, and complete inadequacy. By the time the conversation ended, though still feeling very inadequate, I likewise felt empowered. I would now be able to help guide my children, along with the rest of our family, along this path God had chosen for us because…
1. I believe God is in control of all things and is always with us, and…
2. We now had a support network (through BNA) committed to walk by our side as a resource, guide, and prayer warrior, albeit from afar. Words do not sufficiently convey the gratitude I have for BNA.
The next several months were long and hard as my kids faced many appointments, with little news of encouragement and hope. Each step of the way my children were amazingly courageous as they walked in their pain. Through all of it, broken as we were at the realities given by the medical community, we embraced our sweet girl, who her parents named, Erica Joy, after my son, her daddy, Eric. Our BNA peer minister relayed to me that she had once heard the definition of “Joy” said to be, “the most infallible sign of the presence of God.” I loved, clung to, and tucked this away forever for this sweet child, our little Erica Joy, who at 37 weeks, went to the arms of God.
Never have I witnessed or experienced such pain as that day. Her soul, we knew, had already passed into heaven when her body was brought into this world. Still we met her, loved on her, sang to her, and thanked God for her, all the while clinging to and looking to that day when we will one day be reunited forever in Eternity.
We celebrated Erica’s short and significant life with a private family burial. The following day my husband, Senior Pastor of our church, presided over a beautiful memorial service that about 180 people attended. Following, we went outside where we let pink balloons – our Erica Joy balloons - float up to heaven.
Erica Joy is loved and missed every day! Her big sister, Madelyn Rose, often reminds us “Baby Erica is with God,” when a song, word, or conversation about heaven or God is spoken. You see, Erica’s short little life impacted and changed not only me, her Mimi, but our entire family forever.
As the Mimi, I would like to say it changed me for the good, as I know God’s desire is to use all of our life – not just the joys, but also the sorrows - for His purposes. In saying this, I hope that some of what I learned from my granddaughter’s life can help others who may find themselves on a similar journey. Offered below are my suggestions for those who have a grandchild prenatally diagnosed with a lethal or life-limiting disability.
1. Become informed
For me, this meant doing research and providing my children with materials that could help them understand, process, and move forward through the pregnancy and birth. BNA gave me many resources to draw from – books, other websites, etc., that I was able to either guide my children through or pass on to them. The books I gave them to read, I read myself, so I could understand, prompt discussion, or listen intelligently as they processed.
2. Be their biggest advocate
Affirm them often in the wonderful ways they love their unborn child. I did this verbally, and in written form – text, email’s, and cards I gave to them. Solicit prayer for them. Our church body and dear friends from near and far rallied for our children and family on their knees. I am confident God carried us because of these prayers.
3. Be a good listener
Though very imperfectly, I tried to listen to not only the spoken words, but the unspoken words that were being harbored in my children’s hearts. At times I would try to prompt them to share these- letting out their fears, tears and sorrows for release. Sometimes this was appreciated, and other times it was apparent it was just too hard and the best thing I could do was to just give a hug and go to prayer on their behalf – asking God to meet them in their struggles.
4. Be willing to do the hard stuff
As time went on my husband and I were asked to do other tasks by my children. These included keeping up their Caringbridge site (a super helpful tool to communicate to the masses, so repetitive conversations don’t need to happen), securing a photographer to come take pictures at Erica’s delivery, as well as making all the impending funeral arrangements – a task that was much too daunting for them to undertake given all they had on the minds, hearts, and plates.
5. Help keep the child’s memory alive
My home is full of photos of my grandchildren, including Erica. It is a constant reminder to others of the important place she has in my life. I also had a hardbound photo book made for myself and other family members. Talk frequently about the beloved child. In our family we talk about Erica all the time! We haven’t forgotten her and never will. Visit the grave if you are able. I find myself at Erica’s grave almost weekly.
6. Remember significant days and dates
These include anniversary dates and holidays. I continue to note monthly of the date of Erica Joy’s passing. At Christmas my husband and I gave monies in Erica’s memory to an organization that cares for orphaned, sick children. We presented to Erica’s parents a pretty packaged box that held a card telling them this, along with their other gifts.
7. Be a grace giver
Do this for others as there will undoubtedly be things said that are insensitive and just plain unhelpful. People generally do not intend to say hurtful things, but when faced with an uncomfortable situation, rather than just giving a hug or offering prayer, they insert their whole foot in their mouth. I found online a great list of “dos” and “don’ts” to say to grieving parents. I freely handed these out to people who would comment, “I just don’t know what to say.”
Likewise, give grace to yourself. I realized early on, my inadequacies in being able to provide “perfect” care for my children as I walked alongside them. Find support for yourself – a safe place to cry, to be prayed for, and to be a lifeline for you! This may be found in a spouse, trusted friend, counselor, pastor or a combination of them.
8. Be Present – during and after
I have already suggested many ways to be present during the pregnancy and impending birth, yet it is vitally as important to be present after you have said goodbye. Everyone grieves differently but everyone needs to be allowed to grieve. For my family, we found comfort in just being together. We all knew what each other was feeling and didn’t need to explain anything. Once my son returned to work, my girls and I rallied together daily – just being together, which sometimes included outings to keep our minds from “thinking” too much. Our church showed their presence by bringing meals to my children (and sometimes the whole family) for three continuous weeks. Not only did this provide nourishment, it gave others who cared a tangible way to express love.
I sit here now, nearly one year to the day from saying goodbye to my beautiful
Pink balloons were released at Baby Eric Joy's memorial service.
granddaughter. I ponder her middle name – JOY. I am acutely aware that my heart is forever seared by this sweet child. I likewise am aware that growth has occurred in my life from this pain. I am able to give praise to God for all of it, for I know that one does not erase the other. I think this is the JOY – woven in and amidst the sorrow as only God Almighty can do. I look at life differently and try to cherish every minute of it. Heaven seems closer. I take fewer things for granted. My marriage is stronger for we tethered ourselves to one another in the storm, and anchored that tether to God. Our family is bonded tighter because we loved, stood with, and supported one another through it all. Our church learned tangible lessons about putting into action real-life caring. God has opened new doors and given me opportunities to use what I learned and to walk alongside others who are going through similar experiences. I am forever changed because of Erica Joy and I am forever grateful to God for her life.
By Lori Peterson (Grandmother to BNA Baby Erica Joy)