If you had a child with cystic fibrosis after 2019, you probably have had people tell you, “It’s a great time to have a kid with CF! There is so much hope right now!” Pause. Rewind ... You just had a baby; were told that there was an abnormal newborn screen and given the scariest diagnosis you’ve ever received; but it’s OK, because everyone is so happy that it’s not 20 years ago.
Cystic fibrosis comes with an entire care team for a reason, and one of those team members is a social worker. Those amazing people are there for your child and for you, the parents; I am constantly reminded that I need to take care of myself so that I can care for someone else. Mental health is a problem, and we’re starting our journey sleep deprived, with information overload, and toxic positivity.
Every clinic visit we are given an ACORN depression/anxiety screening (Mine is always off the chart as I had seen a psychiatrist for years before having a child) and reminded about basic self-care skills. You might be told that CF sounds scary and that there is a grieving process before accepting that your kid is really just your amazing kid with some extra tasks thrown in. This is where toxic positivity starts to fester – on the day of diagnosis you’re told that now is a good time. It doesn’t matter how in shock or angry you are, just that it used to be so much worse, and the prognosis is a positive one in comparison.
Look at all the meds you have now, they say. Your child could live to be middle age! Your negative emotions are silenced, your grief pushed down, and your life continues with the expectation that you’re madly in love with your new life raising a baby. Some of this is brought on by the team and community around you, but a lot of toxic positivity is self-imposed too.
You want to be the happy go-lucky person, and you don’t want your child to feel all the things overwhelming you, so you smile and point out the good, crying alone in the car.
I felt alone in a crowd and so angry for such a long time. I started advocating and staying up at night researching. I joined a support group that my clinic had, reached out to any and every group I could find -- including baby blues -- but honestly, none of that got me through grieving the life that I had imagined for us. It didn’t end my fears that the world was out to get us with one sneeze.
It was important for me to find someone who was going through what I was going through and was having such a difficult time explaining to others. I became connected with another mother of a child with CF through CF Peer Connect. My first match was great at taking charge and scheduling phone calls with me. We talked about what was happening now and what treatments looked like for her kid at that age and the next few months after. We discussed that we are more than just medical moms and how to have time that is just for ourselves, and some of the benefits that come with a CF diagnosis.
I’m so glad that I had that connection early on because my match was a calm, reassuring person who told me that things were scary, it wasn’t just me overreacting, but that new parents of children with CF all grow past this sad, angry, overwhelmed stage and move onto CF being a part of life and not all of it.
It took a year, and I’m glad to say that I don’t live in that place of anger and fear anymore and that has a great deal to do with talking to and following so many other parents of children with CF who are thriving.
I am in a place now where I see the positive things that I’ve been told in a healthy light. I do believe that we are going to be able to treat cystic fibrosis like a chronic condition (similar to diabetes) medically managing a normal life, but it took me a year of seeing my son grow up and experience that the coughing would not kill him. It took me a long time to process my own emotions and make new dreams for us, and it took finding a community to share the good and the bad with.
Being thrown into the life of a parent of a child with CF is overwhelming. You probably haven’t figured out how to process the grief of life happening as you imagined, learned what CF is, or what it means for your child. Having all that and a global pandemic? Chaos.
Normally when you want help learning how to do something you find someone to sit down with you and see one, do one, teach one. That’s impossible when your kids can’t be in a room together. I got to have a piece of that connection with my second match … this time we were more informal and preferred to text as things came up instead of scheduling time to talk.
I found someone who was able to give advice and answers to my questions, and we were able to share wins that other people wouldn’t understand. I was able to send a picture of the first time I didn’t have to hold the neb cup. We shared pictures of how we were storing supplies.
I got to organically learn about things that I didn’t know to ask about yet -- my kid hadn’t entered daycare struggles, but through talking about life I learned tricks like sending Ensure® to daycare for snack time so that they can still eat the low fat snack everyone else does and still get their calories or enough fat to make the enzymes worth it.
If you aren’t at a spot where you feel hopeful, it’s OK. You’ve been told that things will become normal, and you don’t need to believe it yet. Find someone to listen to you say out loud that it’s hard. It is hard, you’re doing your best, but staying at 100% isn’t sustainable. I see you -- struggling or not. Be angry and move mountains. The hope will be there when you’re ready for it.
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