9. When Hard Times Come, Let Yourself Feel All The Feelings
9. When Hard Times Come, Let Yourself Feel All The Feelings
Today is our youngest daughter’s birthday and last week was Easter. So, it seems fitting to share this particular lesson at this time. Content warning/awareness: medical diagnosis.
Our youngest daughter’s due date was Easter Sunday. I loved that and thought it would be so cool to have a baby on or near Easter. She came 3 weeks early. At about a week old, we got a phone call that stopped us in our tracks. Her blood work had shown a flag for Cystic Fibrosis (CF). At first we were told it was likely inaccurate. But, after further testing, it was confirmed that she had this genetic condition. We received this news during the week leading up to Easter. Of course we were quickly thrown into worry and had a lot of questions. How could it be that our older kids were healthy and fine, and this little baby somehow wasn’t? What even is cystic fibrosis? What does this all mean? Will one of us have to quit our jobs to focus on medical care?
I did what I think most people do. I googled. The first thing my eyes saw was “life expectancy of 30 - 40 years.” More questions: How can this be? How will we walk this road? What does it mean to raise a child knowing we could outlive them? What will it mean for her to live her life knowing it will be shorter? … some really intense questions around life and meaning and all that. just wild!
I joined a support group on Facebook. And immediately the parents all said “NO! for the love of God, do NOT google CF!” - and boy they were right! What I have learned since then is that it’s really hard to say that someone has CF and know exactly what that means for that individual. There are over 2000 known variants of CF and that changes how someone is affected. The support group friends also explained that there are medical breakthroughs happening right now in the cystic fibrosis world, and there is a lot of hope. That age expectancy that I saw for example, is inaccurate (read about the misconceptions). Though I was grateful to know there were ways medicine could help, I couldn’t hear the “hope” part of it yet. I was too in my grief.
Before I go further, let me pause to offer a quick generic explanation of CF from the Children’s Hospital of Pittsburgh website:
“Cystic fibrosis (CF) is an inherited (genetic) condition found in children that affects the way salt and water move in and out of cells. This, in turn, affects glands that produce mucus, tears, sweat, saliva and digestive juices. Normally, the secretions produced by these glands are thin and slippery, and help protect the body's tissues. In people with cystic fibrosis, the secretions are abnormally thick and sticky, so that they don't move as easily. Instead of acting as lubricants, these thicker secretions may clog tubes, ducts and passageways throughout the body. Cystic fibrosis also causes increased salt in sweat on the skin.”
It was days before Easter. We had this precious newborn and 2 older children. We were swirling with grief and worry and were utterly sleep deprived. We were trying to sort through information and also just trying to adjust to this new life. I cried a lot. I remember thinking, I know that we have what we need to be able to handle this. Like, I know that ultimately we will figure this out. We have family nearby. We have a big support network of our church and friends. We are resourceful and will be able to tackle this however we need to. And… I don’t fucking want to! I didn’t want this to be our life. I didn’t want to have this be how it was. I just wanted it to be different.
I was grieving the life I thought we were going to have and trying to sort out what the new life would look like. I was also sad that this diagnosis was robbing me of those precious first days and weeks of newborn life. On the support group, a woman posted pictures of her one month old. She was filled with joy for her baby. I wanted to be there. I wanted to be able to move from grief to joy. But… I also knew I didn’t need to rush it or push myself to be in a place I wasn’t. Her post began to give me hope. I wasn’t there yet, but I knew I could get there.
We spent a few days feeling our feelings and dealing as best we could. We both processed in our own way. I cried and texted friends. Jeremy did research. And then, Easter was coming. I just couldn’t imagine going to church. I didn’t want to answer questions. I knew I couldn’t match everyone’s joy, because I was feeling worry and grief. But, I also knew, I wasn’t going to spend Easter inside and crying. I just knew that’s not how we were going to spend our Easter Day. I’m not sure whose idea it was but we decided to go to the Tulip Festival north of where we live. It would be a drive, but we felt getting outside and seeing the beautiful flowers would be fun for our kids and would offer us something special to do as a family.
That day still stands out in my mind as one of the most glorious days of my life! The sun shone! The tulips were gorgeous! The fresh air was crisp and good for my body and soul. I watched my big kids laugh and play! We took pictures. We explored. We began to see what life would be like now that we were a family of 5.
When I look back on that time, I am struck by the way our lives mirrored Holy Week. We went from days of grief and despair to joy, new life, and the reminder that God’s love is greater than grief and fear. When I look back at that time, I am proud of myself for not rushing through my pain, but letting myself sit with it. I trusted in myself, my husband and our family that we would get through this, but I allowed my sadness to be there. So much of our culture is busy because I think it helps us ignore some of those bigger, scarier emotions we don’t want to face. I think we allowed ourselves to go there, and then to rebuild and to break forth into this new journey we were going to be on. Easter Sunday was a day of resurrection for me. It was the day I was given back joy, hope and the reminder that we would be ok through this.
I want to share that since then, we have learned a lot about cystic fibrosis and her variants specifically. She has a mild version of it. She is currently on medication and now that she turns 2, she will begin the new “miracle drug” called Trikafta. The beauty of this medicine is that it treats the causes, not just the symptoms. Recently, there was an article in The Atlantic about these new CF breakthroughs. She is truly doing remarkably well and we are so grateful for our team at Seattle Childrens! And, I am so grateful to the families who have walked this road before us who participated in research and who are able to share their stories and offer that sense of community.
So, the lesson, the thing I hold important in my life, is that it is good and ok to let yourself feel the feelings. You don’t have to move beyond and try to get somewhere you’re not ready to get to yet. Cry, share, process, research, etc. Whatever lets you feel the feelings. Two things can be true at the same time. You can know and trust that you’ll be able to get through hard times. And you can also be pissed, hurt, sad, angry, heartbroken, grieving, etc… too. Another piece of this is that these feelings will come in waves. We don’t have to set a timeline or feel like we should be “over it” by now. It’s ok to ride the wave of grief or sadness and then move forward.
It’s a tough season right now for many folks I know. People I care about have had medical concerns come up, have lost family members, lost friends, or are walking with people who are in their final days. So for all of us, I hope we can all remember that it is ok to feel all of our feelings. And it is good to remember when we are out in the world that everyone has a story and some pain they carry. May we all be a little gentler with ourselves and each other today and always. Love and kindness go a long way, especially when life feels hard.
Reflection Questions:
Do you let yourself feel your feelings?
What things do you use to distract or numb?
How might you make it easier for you to sit in all the feelings?
Songs:
In Me - Rebecca St. James - I chose this song because it’s been a song that I have hung on to for years as a reminder that I have a deep well of strength within me. Strength to make it through hard times!
Hold On To Me - Lauren Daigle - This song is one of my go to’s to pray and to ask God to hold me and never let me go.
Rescue - Lauren Daigle - I love this song so much. It’s that remind that God and friends will surround me and fight for me no matter what.
Click HERE to go to the 40 Things, 40 Years Playlist featuring the songs from each blog post.
More About Cystic Fibrosis:
Learn more from the Cystic Fibrosis Foundation
Donate to the Cystic Fibrosis Foundation to continue to fund research.