When my daughter was born with a genetic condition and a heart defect, my family was overcome with support. We were met with the typical newborn baby gifts and greetings. Then support went above and beyond the norm. We received numerous meals, cards of encouragement, monetary gifts, and personal visits. Our family felt loved. Her initial diagnoses were a shock, and the outpouring from others was beneficial. We needed support, and we received it.
In thirteen years, my daughter’s list of medical diagnoses has grown, as well as the number of surgeries and hospital admissions. It often feels like we move from health crisis to the next with weeks or a few months between episodes.
While parenting a child with chronic health conditions, the amount of support my family has received has varied. I have experienced a flood of support, a complete lack, and everything in-between. It’s understandable that others can’t keep a high level of support long-term. People have their own lives and families that need attention. They also have their own problems that require energy. Church clergy have other parishioners that need counsel. In general, people have busy lives.
Support systems are important. Texts from friends help. In-person prayer is encouraging. Knowing people care does make a difference. However, other people can’t be my only source of support. They can’t meet my every need and won’t always be around. At the end of the day, I am often left with only myself.
When my daughter’s breathing suddenly worsens and I’m home alone, there is no one there to calm my nerves. When alarms are going off at 2 A.M. in the ICU and my husband is traveling with work, I have no one there for me while I comfort my daughter. When I try to fall asleep at night, but my mind is replaying events from the day, it’s up to me to break that cycle of thinking.
Support from others is great, but I learned early on that I have to find ways to encourage myself. I have to take ownership of my own mental wellbeing and emotions. When I am feeling down, I can't rely on others to pick me back up. I can’t wait for my pastor to show up to pray; I have to find strength to pray.
Even when I’m alone, I’m not completely alone. God is with me, strengthening me. God is ultimately the source for everything we need. It’s important to seek Him for help and not other people. I have to remember to pause in the chaos and seek God. Sometimes, that’s hard for me. I am busy being a caregiver, and I forget to care for myself by saying a simple prayer.
I appreciate David’s words in Psalm 69 (NKJV):
20 Reproach has broken my heart,
And I am full of heaviness;
I looked for someone to take pity, but there was none;
And for comforters, but I found none.
29 But I am poor and sorrowful;
Let Your salvation, O God, set me up on high.
30 I will praise the name of God with a song,
And will magnify Him with thanksgiving.
My circle of comforters has gotten much smaller over the years. I am thankful for those who are in for the long haul, showing us love and kindness with every text and hospital visit. I am grateful for family members who assist me day or night. I am forgiving when they are busy and simply can’t.
Most of all, I am thankful for God. He sees every tear I have cried as a mother and every heart-pounding moment of crisis. He understands my pain and wants to help me when I call out to Him.
There are moments in this life that feel really lonely, but that isn’t the truth. God is always there. You aren’t alone in this. God is part of your support system.
Evana is a wife and mother of two children. Since becoming a parent, Evana has spent many hours driving to specialty appointments, praying beside a hospital bed, and learning about her children’s diagnoses. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.