The Delisle Family

“People always say it takes a village to raise a family. Well, I didn’t expect my village to be found in a brick house across the street from the hospital.”

“Anyone who knows me would joke and say I’m a professional NICU mama. This isn’t something I would brag about but I have noticed it has become part of my identity. In 2014 our daughter was born almost 4 months early weighing only 2lbs 2 oz. Crazy right … 108 days In the NICU I watched my daughter’s heart stop 3 separate times, lose pic lines daily so many heart dips, collapsed lungs and heart issues. She was considered the noisiest kid in the NICU for always setting off alarms and sending the nurses running. We had been told so many times that she wouldn’t have much quality of life if she even made it out of the NICU just based on how things had progressed the first months with an expected survival rate of less than 40%. Today you can look at her and never know what she has been through. In 2016 we had our second daughter born at 2 lbs. 4 oz who due to major brain hemorrhaging and internal trauma from extreme prematurity did not survive. 2017 came and we had yet another NICU adventure with our son born at 2 lbs. 12 oz hopeful but now cautious and realistic we didn’t know what would happen. Another child was lost to the NICU due to a brain hemorrhage causing irreversible brain damage and swelling months into his stay. You would think we would count our blessings and be done right? No. We had another NICU stay in 2020 during COVID with our youngest. Knowing the routine having done it so many times before, we faced it all over again. At this point in our lives, everyone knew us, from the neonatologists, nurses’ specialists and the staff at the Ronald McDonald House. This time we had a NICU survivor having been through so much again. Watching another child’s heart stop, watching the struggles coming off supports. Taking one step forward and 3 steps back. Another one to prove them wrong. She may be tiny and may have her own set of obstacles from her prematurity but you would find that it does not slow her down that she is a very spicy young girl thriving regardless of any challenges her team of specialists throw her way.

You think that’s enough for a lifetime, right? The NICU trauma in itself is enough to break a person but here we are standing. I can confidently say I made it by with LOTS of help from the Ronald McDonald House and its amazing staff.

People always say it takes a village to raise a family. Well, I didn’t expect my village to be found in a brick house across the street from the hospital. Back in 2014 with our first NICU stay, I was introduced to the Ronald McDonald House. Looking at a long road with all the “what ifs” that come with premature babies and medical complications. I was lost. I felt like my life was just crumbling. My husband continued to work to be able to keep up with the house and payments back home. So, I was alone. It took me a while to warm up to the idea of making friends with the staff telling myself “I wouldn’t be here long… This will just be a short part of my life story. I wouldn’t see much of these strangers again…” Was I ever wrong? The staff at the Ronald McDonald House have watched my girls grow up, as we are there almost every month.

Having medically complex children isolates you. It’s like the outsiders just don’t get it. They compare your situation to other healthy non-medical children and you always feel the need to explain yourself. It’s like your world becomes consumed by medical issues and others can’t see the struggle behind the scenes. All the OT, PT, and SLP homework and meetings just to start catching up to milestones that other babies reach on their own without needing all the extra homework and daily intervention. I was able to find my Group at the Ronald McDonald House. Other parents may not know exactly what you’re going through, but they get it. The staff may not know first-hand experience but they see it day in and day out and they understand the day-to-day struggles. Meeting these other medical families in the Ronald McDonald House has also given me the confidence to navigate life knowing we aren’t alone in the struggle. Whether it was found in the rowdy room when the kids are blowing off steam, before or after a hospital visit. Could be 3 am in the dining room after a hard 18-hour day in the hospital just coming back to recharge before going back and doing it all over again. Sometimes even the simple hi at the coffee corner when you’re grabbing your coffee and cookie before heading out the doors fueling yourself preparing to brave the day.

This house has seen me at my absolute worst but has also seen me at monumental milestones in our lives. The staff have also experienced me for all the in-betweens. Some days in the house passing by staff I would hear “Did you eat today? Go pack a quick lunch from the pantry before you leave.” Or “We saved you a plate from supper in your bin.” Sometimes I was being stopped at the door after a week or two of coming back just for the bare minimum and being pulled aside having staff notice I was burnt out and needed to be checked in on. They looked out for me when I was too consumed looking out for my child forgetting to take care of myself.

I remember during our COVID NICU stay they made everything as easy as possible when I was separated from my husband and two other kids for months. The staff made sure that I had room and space to bring my older kids into the house, and online school and all while I wasn’t able to go home having one child living in the hospital, needing to stay close with each hour being so unpredictable.

There are no words to accurately describe the Ronald McDonald House and how grateful I am for what it has done and continues to do for me and my family. Knowing we have a safe place to return to for medical adventures, tests, surgeries, and appointments takes stress off me and gives the Kids a perfect distraction when they are facing their medical turmoil. The rooms have become my safe place to collect myself before and after whatever we are facing that day because it has become familiar and routine.

The house is always evolving and ever-changing to accommodate and meet the needs of families staying there. And I am so proud to be part of this village.:

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