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Parent Stories & Experiences


Just wanted to say how unexpectedly wonderful the weekend was! I expected it to be relaxing, but not so awesome! The rest of the world looks at what we all go through every day from the outside; it is so wonderful to know people on the inside, looking out! Everything was so well done, and seamless. The spiritual component was such an added blessing. I haven't felt that connected since my Emmaus weekend in high school!

Camper parent John

Nurtured Hope, Trust and Unity in All of Us

Sharing the COPE weekend with my daughter was like an immersion in love, support, good humor and fun. These are all the things that we all need especially the moms and dads who daily give of themselves. As a grandparent I witnessed complete trust and letting go of control and being just a kid again. Your approach to this weekend nurtured hope, trust and unity in all of us on this journey with a deadly illness. I was and am filled with hope and love for all the children and parents. Thank you for making them and me come alive with a restorative peace and understanding that passes all understanding. We drove home as if there was a huge beam of light guiding us. And that light was ignited by you and your warm thoughts and hugs. God bless you abundantly today and always.

Camper grandparent Dorothy

A Life-Changing Realization

When we checked in at COPE, I was prepared for just a relaxing weekend. And while I did eat too much and relax all weekend, what I was not prepared for was the experience: the kindness, the caring, the camaraderie, the tears of relief and sadness and joy and understanding all intermingled. The host parents who welcomed us at the door set the tone: Joyce provides much-needed comedic relief (our coping mechanism!), and Father Dom’s storytelling is second to none. Dividing into moms and dads was beneficial for us on so many levels, and I hope it was for others, too. Knowing that we all struggle with the same feelings, despite the diagnosis, brings us together. Opening up is hard, especially when you are forever struggling to keep up the strong façade and holding in the feelings that threaten to overflow. I always fight it, I try to hold it in, but the women I met this weekend helped me realize that it really is all right to let go. It’s okay to not be okay. I can’t thank them enough for helping me reach that breakthrough.

After our weekend at COPE, we both left feeling like we could take on the “real” world again. I left feeling energized, with a new outlook on life, as clichéd as that may sound. The self that I lost, that I neglected, is back. I have realized that I need to be kinder to myself in order to be the best nurse-mom I can possibly be. I needed the reminder that I’m not alone and that a listening ear is a text or call away. I needed the reminder that, before we were Ava’s mom and dad, we were Dave and Lindsay. We are still Dave and Lindsay, and that is a life-changing realization.

Camper mom Lindsay

A Necessity

This past weekend was the best gift Brian and I could have given ourselves. It wasn't just an opportunity to get away; it ended up being a necessity! We have reconnected during a time that we most desperately needed it.

The man I brought home was the same man that I fell in love with almost 20 years ago. He laughed, he danced, he sang, and he remembered – the love of Camp, the love of himself, and the love of me. I cannot thank you enough for this!

Camper mom Tyyne

An Amazing Gift

What you all have done for us parents is truly an amazing gift. You allowed us to be ourselves, to forget for a little while that life revolves around disease, to remember what it was like for us to just be a couple and be with others who were on the same journey as us.

I forgot how good it feels to laugh so hard I thought I would pee my pants, to dance till my legs hurt, to find the humor and grace in life.

To be able to hear and learn from such warm, compassionate and intelligent people such as Dr. Joyce and Fr. Dom. What we took away from this weekend was far more valuable than money and wealth. What we gained isn't measured that way. It is measured in smiles, laughter, friendships, hope, and renewed spirit. To think that an organization of people would think to do this for parents is truly astounding.

JJ's disease has taught us more than any formal education could. As much as it has placed challenges in our lives it has also brought us many good things. A greater appreciation for life, a realization that family time is important, and – just as important – it brought us to people we would never have known of otherwise. It has put some of the most selfless people in our lives. People who just want to make things as easy as possible. People who allowed him to have the experiences of typical kids. It brought us to Hole in the Wall Gang Camp and COPE and to some of the finest people we have ever had the pleasure to meet. We have never looked at his disease as a curse or terrible thing. Yes it sucks and yes we would give anything for him to be healthy BUT without his disease we would never have been blessed with a group such as yourselves, or the appreciation of what is really important in life.

Camper parents John & Liz