They told me to take care of myself, I told them I’ll sleep when I’m dead
Some people need to learn the hard way. I am one of them.
Shelby was born in October 2013. She was in the NICU five and a half months, which of course meant WE were in the NICU five and a half months. Four months after coming home she had emergency open heart surgery because of a “pseudo” aneurysm in her heart, then we had the intense pain and fear of a second surgery in nine months. In one breath these events strengthen us and weaken us.
We came home to a full assault (because that really is what it is, isn’t it?) of fear, doctor visits, Early Intervention appointments, palliative care services, learning how to schedule enteral supply deliveries, eventually the addition of out-patient therapies, parenting sisters… and trying to take a shower. Throughout this process well-meaning people—people who have never experienced anything like this by the way!—kept saying “Don’t forget to take care of yourself.”
My response was always, “I’ll sleep or rest when I’m dead.”
A little over two years later I’m half a step away from a whole lotta crazy. I can literally feel my body, emotions, spirit, mind crumbling. I thought the things I had been trying to do to take care of myself (like switching to the Paleo Diet and going to the chiropractor) were all I needed, but they couldn’t even begin to keep up with the stress or reverse the damage that was done.
For Christmas this year my husband booked a one night stay for two (that’s two adults, not kids) at a spa resort in Vermont. I cried a sweet stress-relieving cry and promptly changed it to a three night stay. I was ready for a break, to put my needs first and to take care of myself, even if only for three days!
It was a necessary break and I waited way too long for it. Here are some things I learned….
- MONEY!!! Being a one-income family is tough, it’s even tougher for us who have complex kids. Part of putting off taking a vacation was not having any money. I was at the point of desperation where the thought of vacationing on a credit card wasn’t so bad.I have a December birthday; when this awesome time of year rolls around the birthday and Christmas money I receive always goes towards bills. This year it didn’t: I intentionally set it aside for a vacation. I also planned on using respite funds until our amazing church learned about our need and gave us a gift for our vacation.
People who love you can and do want to help! Be open to those in your community who may be able to meet your needs. Is there a social group who may be able to gift you? Or someone who may have a condo you can use for free?
- FEARS!! The first fear was, “What’s the point of taking this vacation? I’m just going to come back to all the stress anyway.” I don’t know how to handle this still (I’m writing this on our last day away), but I do believe that having the break was much better than not!
Shelby got a spa day from
her grandparents too!The second fear is about letting go. I was really worried about entrusting Shelby to my parents who take great care of her, but usually only have her for one-night sleep overs. The core of this fear was what my husband described as “calling an audible” (I don’t get football… groan), but he explained it this way: My parents just don’t have the experience turning on a dime should Shelby’s needs change or if there is an emergency. I mean that respectfully Mom and Dad!
To relieve this fear, my husband and I made a list (I like lists because they force you to be short and clear) days in advance of our departure on how to care for her g-tube, give meds, fill her pump and deal with gas. Then we reviewed it with my parents twice and made them do the list following what I wrote on the day we left. The other thing we can do to make this fear disappear is go away more often.
The third kooky-lady fear was death. What if something happened?! What if I died? I run such a tight ship and do it all myself that no one else, not even my husband, knows what I do or how I do it: Which pharmacies for which meds, which doctors we consider Shelby’s primary caregivers, how to give meds, how to care for her g-tube, and most of her providers’ contact info are in my phone. I need to write this down, currently it’s all in my “mind palace” (Sherlock fans). But of course, this is also a fear that goes way beyond vacation time!
- But I also learned other things about myself. Like that I loved not taking care of my kids.
- It was easy to not talk about the kids, but hard to find other things to fill the silence. What did we talk about before kids?!?!?!?
- I need to find things to do FOR myself. I realized the Paleo diet and chiropractor visits I mentioned above are really FOR other people, i.e. getting healthy to take care of others. Being healthy is great, but I also need to do something to just unwind.
- I’m going to start reading again.
- I love steam rooms and saunas.
- We’re not waiting another six years to take our next vacation.
If you’re a special needs parent please take care of yourself. Going to the market alone is not “me” time, I’m speaking to myself too. And if you’re the loved one of a special needs parent encourage (force) them to vacation AND figure out a way to help them do it!
Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years… and the subsequent adventures on her blog, Fab Feeney Five.
Related Posts
Special Needs, Support
Five Steps to Finding Joy: Faith and the Journey of Parenting with Special Needs
When we pray the Rosary, the Joyful Mysteries invite us to reflect on moments that reveal profound spiritual truths. Yet, if you’re like me, you may wonder how these events...
Special Needs, Support
How Do You Keep Faith Alive When Your Child Remains Ill?
I understand the emotional toll of chronic illness, but I also believe in the power of faith and community to uplift and sustain us.
Special Needs, Support
Overcoming Burnout: 6 Tips for Mothers of Special Needs Children
Feeling anxious, low, and tired all the time? Parental burnout is common among special needs parents. Read below for some steps you can take to feel better.