Today I want to talk about what I wish I would have known. I really wish we could sit across from each other with a cup of coffee and I could share these things with you. I know the weight of the world you feel right now. Before we start I want to tell you, that you are a great mom and you are doing the best you can in an impossibly hard situation, I see you!
Number One: I wish I could tell myself not everything was an emergency.
Obviously there are true emergencies like hospitalizations, emergency room visits and ambulance rides. But most of Sam's life is not a true emergency, even though our brains think they are. This is our worse case scenario mindset, taking over. Which is really easy when you live in that fight mode for so many years like we did. When we first got Sam’s prenatal diagnosis, I went home and started googling. I ordered all the books, I joined all the groups and I was going to have it all planned out and then he was born at 25 weeks - God had bigger plans - and all plans I had went out the window. It was no longer emergent to read the books and get in the groups - he was here and that was an emergency in itself. Through the years, though his health, thank God, has drastically improved, he has overcome so many odds, but I often find myself back in that fight or flight scenario. Back in the days when everything was an emergency and every day felt like something life changing was going to happen. Everything felt urgent. And it was exhausting. Everything felt like a race so much so that when life did calm down, I was still running at 100 miles an hour headed straight for burnout. So much of what happens with our kids is a very long and slow walk, with one step forward and three steps back and I know how incredibly frustrating that can be. I got to a point where I felt like I was also rushing with him - rushing for the next milestone, the next accomplishment, but what’s the rush? We have time. I needed to lower my expectations and ask myself what is the rush? Why am I in such a hurry all the time?
Here’s a little practice that I liked to do -- that my therapist taught to me to ground me in the present. I would name the thing that I think is an emergency. For example, let’s just say your child is refusing to eat at school and you think you need to fix that right now (as in, drive up to the school this minute and fix it, call the feeding therapist, and change up what he was eating, etc.).
1. First I just needed to name what’s going on: Sam’s not eating at school. (Before we go on, notice I did not say 'Sam’s not eating at school he’s never going to eat again' -- I can be very good at catastrophizing.) You may feel all these things but try to take the emotion out of it. Sam refused to eat today at school.
2. Second, what is one step that I can do today to move me towards making things better? Notice, I didn't say make things 100% better. What is one thing?
3. Next is to speak truth over it. There’s been so many days when Sam’s just decided not to eat lunch or refuse a snack, or to go to bed, not eating dinner. His feeding journey, for a lack of a better word, is the most frustrating and confusing thing I have ever done as a parent. Honestly, though, I have to think to myself how often Maddie and Noah (my other two typical kiddos) skip a meal, not eat lunch, or go to bed hungry because they refuse to eat their dinner, which is all the time!
4. Lastly, Remind yourself: OK this is not an emergency. We have time to slow down and take one step at a time. We need to just do our best to try to eliminate that “hurry mindset”. If it isn't a true emergency- do we have time to sit back and process what is going on?
Another good example is Sam is going to kindergarten in the fall and his IEP is coming up. A hurry and fear-based mindset would have me saying, 'I’ve got to figure this out right now -- I’ve got to call the school, I’ve got to hire an advocate, I have to do _____ and if I don’t do everything right now, it’s ruined.'
Instead, I need to remember, 'I need to make this a priority and in the next few weeks. I will block off time to work on it but if I don’t get it done right at this moment, I will be fine. He will be fine.'
Number two: Everything is not my responsibility.
Now this one is very hard as moms we feel like we have to give 100% to everything. Dad’s may feel this too. My husband is loving and an incredible father, but he has this amazing ability to just, not overthink where I overthink everything, I can tell him something and he immediately is able to take a deep breath and see what needs to be done. I have Olympic gold medals in overthinking and worrying. If everything is not our responsibility what does that mean? What will I worry about then! I am now worrying about not worrying!
An example for me was - the responsibility to do therapies at home when Sam was younger. I found it insanely overwhelming to try and be mom and also be a therapist. I was trying to keep sheets of exercises to do for PT OT, speech and feeding that I felt like I wasn’t even able to be his mom. I was just being a therapist and caregiver, and I hated it. It wasn’t good for our relationship. I had to take that off my plate. I had to say that all of his therapy is not my responsibility. I cannot take it all on. There’s a lot of blame that we put on ourselves when our kids don’t hit certain milestones and in certain time frames and I had to let go of the timelines I was putting on him and myself. Sam is going to accomplish great things in his life but it’s on his timeline- it always has been- no matter how much therapy I do in my home I had to give myself the permission to be a mom first.
The amount of pressure I was putting on myself to do all the things and be all the things was leading straight to burn out. I had to give myself permission to release that responsibility.
Number three: Your well-being matters
I think this is the most important one. I wish I could go back and say to my younger self... SLOWDOWN! Take the time to take care of yourself. We often say I don’t have time to take care of myself, but you don’t have time to put this off! I know several dear friends who have just barreled through and didn’t remember to care for themselves at all and now they are paying the price- dealing with health issues with their body that resulted from not taking care of them, autoimmune diseases, chronic migraines, weight problems, and bad joints. So, if I can go back and tell myself anything I would say, do what makes you feel happy and well rested. Find the things to do and do them every day. The little things add up! They don’t have to be extravagant even though a trip to the spa sounds amazing but as parents of kids with disabilities, we can’t do that everyday, but what is something you can do every day? What about 15 minutes of quiet time in the morning? What about a walk after dinner? How can you take care of yourself in this season? Maybe it would help to think of them like we have accommodations for our children to thrive in their environment. What accommodations do you need to make you function best in your environment? We do this for our kids, so that they are supported in their day to day. How can you do the same for you?
Recently, when I was in a challenging season at the beginning of every week I started asking myself 3 simple questions:
What can you ask for help with?
What can I let go of?
What do I have to look forward to?
Those 3 little questions can help you start prioritizing your own well being so you can show up better for the ones that mean the most to you! Those are the things I wish I would have known sooner - not everything is an emergency, I can’t do it all- not everything is my responsibility, and what “Accommodations” do you need to take care of yourself in this season. There's so many more I could say, but I am starting with those.
What is something you would have known earlier in your journey?
I would love to hear from you!
Xo, Sara
motherhood, parenting, self-care, lessons learned, personal growth, maternal well-being, coping strategies, mental health, stress management, time management, self-compassion, resilience, support, community, special needs parenting, journey, reflection, mindfulness, emotional wellness, balancing responsibilities
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