The number one thing we were asked while facing our daughter's initial diagnosis, and then during our period of testing and waiting for fetal surgery, was "is there anything I/we can do?" And when you're in the thick of that uncertainty, coming up with answers to that question can be exhausting. So what can you do? I've compiled a list of helpful ideas of what to do, and what not to do, based on our own experiences.
1. Give them space to process. Reach out and initially establish that you are there if they want to talk, but don't push. Along with this, do your own initial research on their child's diagnosis. Sometimes it felt gut-wrenching to answer the same questions over. While you may be asking questions out of compassion, know that nearly every other person in their life is also asking the same questions.
"No, we don't know if she will walk."
"No, we don't know what caused this."
"No, we don't know if her cognition will be affected."
"No, we don't know if it will affect my delivery."
"No, we have no idea how much any of it will cost."
Along with this, know that they might not want to talk about it every time you see them. Ask them about anything else. Any time we could talk casually about anything besides Callie's diagnosis, it gave us a brief moment of normalcy. Giving expecting parents any chance to feel "normal" is a gift. Ask them if they want to talk about the diagnosis, don't just assume any time is a good time.
2. Indulge in what brings the parents joy. I already knew that I had the best group of friends before walking this journey, but I had never been more thankful for them than I was that week. My friends know that peonies are my favorite flowers, and are only very briefly in season, and each sent a few dollars to go towards my "peony fund' and encouraged me to go to Trader Joe's and buy my favorite flower, whenever I was ready. This was the first time that I left the house in days following our anatomy scan.
3. Do not make it political. If someone learns of a life-altering diagnosis halfway through their pregnancy, they do not want to hear anything about pro-life/pro-choice. Or that your cousin's husband's ex-wife had a baby who didn't listen to the doctors and "chose life anyways." They don't want to be in this position at all. They have already dreamt about what their little personality will be like, what color hair they will have, and what their sweet smile will look like. Now is not the time for politics.
4. Understand that they are grieving. Their child may not have a fatal diagnosis, but life is forever changed for what they thought it would look like. We mourned a normal pregnancy and knew that from here on out, it was no longer what I preferred, but what was best for our child. I cried over not knowing whether or not our daughter would ever get to wear a tutu for a ballet recital. Or if she would ever get to chase her brother around the backyard. Grief is omnipresent and lurks in places you'd least expect. Be aware that everyone grieves differently. I retreat into isolation and don't want to talk to anyone, while my husband finds comfort in his regular routine. Any way they handle it is valid.
5. Send food or take-out gift cards. Grief is nauseating. Nothing sounds good to eat, and there is certainly not a desire to cook. Let alone the mental load of planning a grocery list, going to the store, cooking the meal, and cleaning up afterwards. Providing the means to let them just order dinner and use what little mental energy they have on other necessary life things. Like parenting, cleaning, working, etc. We were able to sit on the couch, cry, and order dinner at 9 PM if something finally sounded good.
6. Offer to help with their other children, if they have any. We were so grateful for everyone who stepped in to watch our toddler while we went to a multitude of appointments. Or for those who offered to keep him and for us to just go on a date and enjoy each other's company. Childcare is incredibly expensive, and often parents facing medical diagnoses are already wildly concerned about money. Giving them an evening out is a blessing.
And finally,
6. Be wary of platitudes- religious and secular. Of the things that have hurt me most deeply or made me question my faith on this journey, these simple little phrases top the list. These things people say that sound nice or could be comforting to you, may be deeply upsetting to someone facing this journey.
"Special children are born to special parents." So I'm being punished for being a good parent? In what world is that fair?
"You're so strong/you're handling this so well" - I actually am not strong. I am continuing life as "normal" because I do not have another choice. I am falling apart at the seams and just trying to hold things together.
"God only gives his toughest battles to his strongest soldiers"
"God doesn't make mistakes; this is who she was meant to be."
"Her story will bring people to God."
Oof.
So what should you say? Whatever you say, say it with a careful heart. Families facing a fetal diagnosis are arguably at their most sensitive and emotional points of their lives.
"I know this can't be easy."
"I'm proud of you."
"This isn't fair."
"Is there anything I can pray for specifically at this time?"
"How can I best support you?"
I will never forget how I was loved during the second half of my pregnancy with Callie; I will forever remember the friends who reached out, checked in, and loved me. I will remember the people who prayed over our family and supported us. I will remember the solid foundation my husband provided for our family so I could just focus on taking the next step and doing the next right thing. Showing up for the family in whatever way you can is something they will never forget or be able to fully express their gratitude for.
So proud of you, Sarah <3
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