The CF Parent Relationship
When my husband and I had our son, we were in our late twenties: old enough to have established a solid relationship and young enough to have the energy to live out our big dreams. While my pregnancy came as a surprise to us, the groove that we found ourselves in did not. We were made for each other and we were made for parenthood. This was confirmed when we were given one of the biggest tests a parent can be given.
Becoming CF parents
A newborn CF diagnosis is Earth-shaking. For a parent, it is like being taken from your already rocky mental state from having a baby and being thrust into space. It's dark, lonely, and you don't know where you are headed. You do what can and you lean on each other. Sometimes that works out and sometimes it doesn't.
While it can be isolating, you have to trust your partner. We are almost 12 years into this journey with our son and we have learned (mostly the hard way) what we, as a couple, have to do to survive this together.
How we make the CF parent relationship work
We share medical responsibilities
There is no "You are in charge of the CF stuff" in our home. We each grab a part, doesn't matter what it is, and do it.
We each carry these responsibilities and tackle them together. Neither one is "in charge" of something. We each know how to do what needs to be done and there are no fingers pointed when something isn't completed. The least helpful thing CF parents can do for their child or their relationship is play the blame game.
We allow the other to feel
By now we know when the other person is feeling the CF caregiver load. We each gladly shoulder those burdens for the other person because we both realize how incredibly important it is for their mental health.
You go go go, get into the rhythm of things for so long--at some point, you need to back off for a second. You can only handle the momentum for so long before you break. This leads to mental burnout and hurt feelings. Offer to carry a little of their weight while they get themselves back on track.
We act like a married couple
Like most parents, date nights and time alone is rare. And, like most parents, this needs to be a priority. We might be the parents of a medically fragile child, but we are still parents and we are still a couple. We still have to place our marriage in the place of a high priority.
A lot of times we find ourselves more in the caregiver role than the husband and wife role. It's not a good place to stay for long. When this happens, we plan some time alone. We make this a priority and don't make excuses. If we don't have each other, then we aren't a team. We aren't just a medical team, we are a married couple and time alone has to be a reoccurring thing, even if it's not near as much as we would like.
Remember, you're a team!
As tough as being the parent of a child with CF can be at times, placing your marriage on the same list of high priorities as your child, is crucial. Working together as a team and leaning on each other for support is incredibly important for your marriage and your ability to be the best caretaker that you can be. We are better caregivers when we take care of ourselves and each other.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?