Ellie : Connection Through Heartbreaking Realities

In 2014, my husband Patrick and I welcomed our first child into the world. A beautiful little girl with pouty lips named Ellie. About a month before she was born, Patrick and I first heard the words that would shape our lives and the life of our daughter from that point forward: “Severe congenital heart defect.“ At that late stage of pregnancy, it was difficult for the doctors to give us any specifics. Our new life, full of morbidity statistics, long unpronounceable diagnoses, and a terrifying amount of unknowns, had begun. We were now “Heart Parents” and “Medical Parents.” Broad terms used to describe parents that have to watch their child fight, day in and day out, for all the things that most of us take for granted- eating, breathing, talking, walking… living. 

We could never have imagined or comprehended the journey that was in front of us, but I will never forget the moment that I first realized just how different our experience was from that of most first time parents. It wasn’t the month in the hospital on bed rest before Ellie was born, or her birth in front of at least 10 doctors and nurses, her stay in the NICU, or even when she coded and had to be resuscitated at 10 days old. 

It was Facebook. 

I was in my daughters hospital room sitting behind a screen, attached to a breast pump and scrolling my newsfeed, which that day featured several of my friend’s professional newborn baby photos. I don’t know if it was the hormones, or the stress, or the lack of sleep from spending months in the hospital with my very sick newborn, but the grief suddenly kicked. Hard. Those pictures seemed to represent everything that our little family had missed out on. First diaper changes and night at home, snuggling, breastfeeding, cute little baby outfits… for the first time I truly felt the awful feeling of “us” vs “them.” 

It was a very lonely feeling. 

But I was a Medical Momma, so I had my pity party for a few hours and then I went back to work helping my daughter fight for her life. Eventually, Ellie got to come home for a few months and at about a year old she had her first open heart surgery. Patrick and I had learned to juggle doctors’ appointments, medication schedules, the feeding tube, physical therapy, occupational therapy, and speech therapies, plus working, dealing with insurance, appealing for denied medications and procedures, and trying to keep up with household and medical bills. To say it was exhausting is a gross understatement. There was no time, money, or energy left for going out with friends or play dates, plus I was finding it harder and harder to relate to my friends and their experiences, which were so different from my own. 

My feelings of loneliness and isolation continued to grow. It was around this time that I first heard about an organization called On Angels’ Wings that provided free professional photographs for the families of medically fragile children. To say I was excited doesn’t even begin to describe it. That day in the hospital I had resigned myself to the fact that we would never be able to afford a luxury like professional family photographs- there would always be a more pressing need that would take priority. When I heard about On Angels’ Wings, I immediately felt like maybe I wasn’t as alone as I thought I was. Maybe there were other families in our community having these exact same thoughts! 

I felt like one of my many prayers had been answered. 

It was about so much more than photographs – I felt seen. I felt heard. I was amazed that someone had anticipated this need I felt deep in my soul, to have beautiful documentation of my daughter’s life- the good and the bad. I wanted to worry about “normal” things, like what outfits we would wear and how to make Ellie smile for the camera. I wanted to show the world that our family life was not something to be pitied, but full of the kind of joy, love and hope that comes from having to cherish every single moment as if it could be the last. 

Five years ago I had my first conversation with Michelle Cramer, the founder of On Angels’ Wings, and I knew that I had finally found someone who understood us. Someone who had seen a child die. Who knew that children don’t always get better, and that what we needed wasn’t another person telling us that everything would be fine. We needed someone to get into the trenches of reality with us. To let us talk about life, and death, and grief, and prayers that seem to go unanswered. Michelle did this and more. 

She connected us to a community of families grappling with these same heartbreaking realities. Through On Angels’ Wings we have met families in all the stages of this “medical family” life. Not just the grief that comes with the diagnosis, treatments, surgeries, struggles and death, but also the enormous joy of milestones met, successful procedures, hospital discharges, birthdays celebrated, and rainbow babies. This medical family life is full of the highest highs and the lowest lows you can imagine, and it is a wonderful feeling to know that we are not facing them alone. 

Since our first On Angels’ wings photos, Ellie has had many more heart surgeries and medical procedures, including a miraculous lifesaving heart and double lung transplant last year. Through it all, Michelle and On Angels’ Wings supported us and anticipated our needs by providing last minute hospital photo shoots, Making Memories Day, prayers, cards, gifts, hugs, and so much love for our family. Our OAW photos over the years document not just the stages of Ellie’s medical journey, but also the many stages we have gone through as a family. We have become a strong family unit capable of not just coping with our life, but appreciating and cherishing every moment of it.

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