Cincinnati Children's Blog

ParentTOUCH Volunteer Gives Others A Hand to Hold On To

ParentTOUCH Volunteer Gives Others A Hand to Hold On To

This month we are sharing reader-submitted stories that reveal the true spirit of the holiday season. This is Erin’s story of understanding and friendship when it’s needed most.

My name is Erin Moore and I am the mother of 4 small children, one of whom has Cystic Fibrosis.

When my son Drew and his twin sister were born in 2010, he was immediately taken to Cincinnati Children’s for bowel surgery. Soon after he was diagnosed with Cystic Fibrosis. Our world was turned upside down. Over the past three years, we have had the honor and privilege of working with so many wonderful caregivers at Cincinnati Children’s. They have touched our lives in ways that they will never know.

I now participate in a support program at Cincinnati Children’s called ParentTOUCH, where parents who had a child in the NICU spend time visiting with parents of a child currently in the NICU to share a message of hope. I get so much out of volunteering in this program, hearing from so many families the same wonderful things that I feel about the doctors and nurses and many other wonderful caregivers that work there. They carry us through this journey that none of us asked to be a part of, and our lives would not be as good as they are without them!

I wasn’t aware of the ParentTOUCH program until about a year after we were home from the NICU. We were so overwhelmed with having twins, one of whom required a lot of special attention that first year, that we hardly had time to eat.  I had such an incredible experience in the NICU during one of the most difficult times in my life. I’d often wondered how I could show my gratitude for all that everyone had done for us during our stay.

An opportunity to join the ParentTOUCH group was posted on the Cincinnati Children’s Facebook page and I contacted them to learn more. After talking with the team, it was an opportunity that I couldn’t pass up. I needed a way to show my gratitude and was honored when I was asked to be a part of the team.

I volunteer 2 hours every other week. Having four children ages 4 and under, one of whom has special needs, leaves very little time. I am thankful that I am able to spend every other Wednesday night with parents who are so grateful to see someone who really does know what they are going through. When I walk through the door, whether they are happy or sad, or tired and frustrated, once I tell them who I am and why I am there, there is a comfort and companionship. They know that I understand. I have been on their journey.

The Moore family.

Spending time in the NICU is a humbling experience and has made me realize the importance of giving back. I get so much more than I give every time I visit Cincinnati Children’s, whether the people I see realize it or not.

Every once in a while I cross paths with someone who is starting their journey with Cystic Fibrosis and I wish that I could find the words to tell them that they, too, will be okay.

I found an article online that I often share with folks I meet in the NICU. It is a parent offering words of advice and wisdom to another parent who is going through a similar experience. It’s called “What I Would Tell You” by Julie Keon, and it summarizes exactly how I feel and why I joined the ParentTOUCH program. Here it is.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastroenterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it.

And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bull.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Happy Holidays!

Cincinnati Children’s began piloting the ParentTOUCH program (which stands for “Together Our Understanding Creates Hope”), last August in the Newborn Intensive Care Unit. The idea, modeled after a program developed 24 years ago at Children’s Memorial Hospital in Chicago, is that the stress and challenges of parents with sick children can truly be understood only by those who have walked that journey.The program is expanding to the Pediatric Intensive Care Unit, the Heart Institute and the Inpatient Neuroscience Unit. Learn more about ParentTOUCH
and watch a video about another’s families journey.

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