Medical Mom Monday - Margaret
Keith’s diagnosis: HLHS, post Glenn, inpatient on heart transplant list accruing time.
Advice you would give to another family?
Take it one moment/day at a time. I’ve had to come out of my future planning self and pause. Take a deep breath. This journey has some hard times and joyous times. Pausing and being present has helped my husband and I appreciate all the small moments more.
Another heart mom told me to write everything and take pictures. I have to pass along her advice as well. I have just began writing now that my son is 1 and living at the hospital waiting for a heart transplant. It’s given me more time to reflect. While it was the last thing I wanted to do, I am grateful I took those hard pictures after surgeries. I immediately put them in a hidden folder after I took them and showed no one. Now I’m grateful to see where we have come and have that for my son to see one day, if he chooses.
You are not alone, Mama. Montana Brave Hearts helped me beyond words! They gave me a village I’ve never experienced before. I have made life long friends.
What's the biggest challenge you've faced?
The biggest challenge is learning all the medical side of things and advocating for my son. I did not go to medical school. What I did do was listen during rounds, be involved in every care, asked questions about every surgery, and show up everyday. There have been time I felt defeated and voiceless. I feel like a broken record when the teams do it the way they always do things and I tell them no that way DOES NOT work for my son.
My son is a HARD poke. A lot of heart babies are. Pokes have always been a challenge and no matter how many signs or times I say “he’s a hard poke” someone thinks they have all the answers. I’ve gotten more confident on how I advocate for any poke: IV, PICC, labs, etc. I’ve had to ask questions, understand the process of placing an IV/PICC, and build relationships with trusted healthcare providers so I can best advocate for my son’s care when it comes to pokes.
I know the caregivers have the best intentions. I also know that Moms are the gatekeepers of their child’s care. Caregivers need to pause and listen to what we are asking and take the time to find the best practice for our child.
We have found a good system now and I’m so grateful for our IV Team!
The song Strong by Anne Wilson has helped me through those really hard pokes.
How do you balance taking care of your child's medical needs while still taking care of your family?
Through the grace of God. Many days I fall short. I don’t give my 3yr old enough one on one time or be fully present when my husband and I finally have a moment to talk or my water intake for the day is nonexistent. When these things happen I pray that God will help me fill in those gaps. Thankful tomorrow is a new day and His mercies are new every morning.
We moved to a new state from Montana for our son’s medical care. We had no family or friends yet. It was a big adjustment. Now trying to live a “normal” life can seem overwhelming. I just want to take my kids to the zoo, library, or watch them play in the backyard together. One day. If you are asking yourself the question “am I doing enough for my family?”, that means you are a good mom.
I have timers on my phone for all of my son’s medications and calendars remembers for procedures even while he’s in the hospital waiting for a Heart Hero. This helps me stay attentive for when he comes home and allows me to have uninterrupted play with my daughter and son, knowing the alarms will help the transition from Mommy to Nurse Mommy. My husband and I also decided that family meals are so important. Sitting around the table blessing our food, giving thanks for another day, and the time to connect is refilling. Durning the weekdays we dinner at home the 3 of us and then on the weekends all 4 of us eat at the hospital.
It takes time to find a good rhythm. This valley won’t last forever, the mountain top is just ahead.
