We have all heard the expression “it takes a village" and in our case, this statement is absolutely true. From the moment our daughter was diagnosed with cardiomyopathy at two weeks old we have had their support.
They were there during her heart transplant, through rejection, and still today, 25 years later we have these amazing people in our life. I was a young, first-time mother, and never dreamed I would be in the position. Without a doubt, I would never have made it through all the obstacles we faced if I had not had this amazing tribe of people supporting us.
You name it, they did it
From the start, it was overwhelming the way people reacted to the news of Alyssa's diagnosis. Our parents, siblings, aunts, uncles, cousins, and friends all rallied around us and provided us with the emotional and physical support we desperately needed to face the battles we had ahead of us. They took turns sleeping at the hospital, brought us clothes, fed us, got our medication from our own doctors, cleaned our home, held our hands, cried with us, did fundraisers, set up prayer chains - you name it, they did it.
Support from strangers
What I did not expect was the outpouring of support we received from total strangers. As word spread of our situation, we began receiving well-wishes, prayers, and gifts from our friend's families, friends of friends, co-workers, church members, and community members. Parents in the ICU gave us prayer cards, inspirational keepsakes, and much-needed advice on how to handle life in an ICU. One day a teen mom who I new had many hardships gave us a pink fluffy dress her daughter had outgrown she said “I would like your daughter to have this for when she leaves the hospital." It touched me and I made sure that I did put Alyssa in that pink fluffy dress and felt a pang in my heart as I put it on her.
As time has passed I have learned who my tribe is and it’s been a crazy road. The people who show up for you are not always who you think it will be. Sometimes it’s that friend you haven’t spoken to in months but always comes through when you call. Sometimes it’s that person who doesn’t have enough time for their own family but sets aside time to talk me off the ledge when I’m scared. I have had friends and family take my daughter for biopsies when I’ve been sick and watch my youngest daughter for us while I’ve been in the hospital for weeks with Alyssa.
Sometimes it picks us
Every time I post something on my Facebook page about biopsy day or doctor visits, I know exactly who the people are who always comment and send their love and prayers. We don’t always pick our tribe, sometimes it picks us. We learn who shows up and we learn who we need to stay close to. I in return have people in my life who I support and show up for regardless of what I’m doing or want to be doing. No one wants to go through the tough times with someone but we do it because it’s who we are. Those are my people and I will always be grateful for the amazing family and friends we have gathered on our journey.
Do you use exercise to help manage your heart failure?