It’s no secret many parents of kids with disabilities are weighted down by the everyday demands in life. Sometimes, it feels as if you’re merely surviving.
If you have ever parented from the trenches, you know how desperate you can feel and how even the smallest task – like doing laundry – feels so overwhelming that you lock yourself in the bathroom and cry. I’ve been there.
You put everyone’s needs before your own. You give, give, give and after a while you’re empty and depleted. You don’t take time for yourself because there’s only so much time in a day, and caring for your children is a priority. It’s what we do as parents.
At times you’ve had to fight schools, doctors, insurance, or what feel like the world.
Dear mom or dad, who fights for you?
I want to assure you that you’re not alone and someone understands the loneliness and the grief and the joy and the love that you experience parenting a child with a disability. So I’m doing the best I can across this screen, reaching out and fighting with you.
And you are worth fighting for.
Let me remind you why you need to fight for you:
- Because you need more energy.
- Because you need to live with a sense of peace that surpasses your circumstances: “Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:7 NLT
- Because you need to set an example for your children.
- Because you want to be able to care for your children as they get older.
- Because you matter!
I am not saying that this is easy. It means looking at yourself with as much love and compassion as you do for your child.
I know there will be times when you feel too exhausted to do something for you. I’ve been there. It takes less energy to turn on the TV as opposed to making myself get up to take my dog on a walk (I need those walks as much as he does!).
I know there will be times when you feel guilty that you’re doing something for you rather than for your child. But remember that you have to take care of you to take care of others.
I also know your time is limited and there is only so much you can do in a day. Your child will always take priority over yourself, it’s part of being a parent.
But I don’t want any of these obstacles to keep you from doing something that will help you gain a sense of peace. I don’t want you to feel constantly held back by life’s challenges knocking you down and kicking you hard.
In my personal life, I have found that I can do small things that make a big difference, and perhaps these will help you survive too:
Practical: Know what is for dinner the night before
Does this sound familiar to you? It is 5:30 pm, everyone is hungry and you have no idea what’s for dinner. I’ve been there more times than I can count! Instead, every night I decide what’s for dinner the following day. If I have a plan, things go so much better.
Spiritual: Cultivate Thankfulness
Here is the truth, 2015 was a hard year for our family, for me, so at the end of the year I decided I needed to cultivate thankfulness. Every day in 2016 I have found something to be thankful for (you can join me on Facebook and share what you are thankful for each day). This year has not been any easier, but my outlook in life has been tremendously different. I am beginning to see the many ways in which God is present in my life as I practice thankfulness. My perception has changed, there is so much I am thankful for, including things that before I was unable to see because I focused on the hard.
Personal: Learn to Say No (I promise the sky will not fall down!)
I’ve learned that saying no is okay. I’ve learned that sometimes life is so overwhelming that it is okay to call and cancel therapy for that week. I am only one person, and I can only do so much.
And because I don’t want you to feel you are guessing at what you can do to make life more manageable, I created a simple guide with 13 practical ways to help you find peace in the midst of chaos, so make sure you get a copy of this freebie: Yes, send me, The Special Needs Parent Survival Guide
Every step is a victory
Things will come up. After all, life is unpredictable. And in this life we live we cannot avoid having a crisis. So you take it day by day. Just one day at a time. Some days you will do better than other days, some days will be good, and some days will be brutal. Some days you will be merely surviving and find yourself holding on tight for dear life. But every day is a new day. You can always start again and get back on track. You can start again over and over, there is no failing at this.
I want you to really hear this, there is no failing at this. Every time you take a step – no matter how small – it is a victory.
I want you to find great joy in the everyday things, the small things, the drops of grace that fall on you throughout your day.
Oh I wish I had a magic wand to make life better for you, for me, for every parent who is struggling or has ever struggled. But it doesn’t work that way.
I know you want to be present for your kids and take care of them. You want to be mentally, spiritually, and physically available to the best of your ability.
There is hope. And hope is what you hold on to believing that you can live a life of peace even in the midst of chaos.
You can do this, I believe in you, I’m fighting with you.
Yes, send me, The Special Needs Parent Survival Guide
Special Needs Parents, Are You Surviving?
I created a guide with 13 practical ways to help you find peace in the midst of chaos, opt in to make sure you get a copy of this freebie!
Thank you, Ellen, for this timely post.
You are welcome 🙂
Fantastic Ellen. A great column for all parents. Bravo!
Great advice!
Thank you, something I need so much today.
Oh how I needed to hear/ read this. Im Struggling right now with taking care of me! Thank you so much for these words.
Thank you Ellen. Nice to hear this in my current struggle.
So much needed at this time in my life! I will personally be thankful everyday for all the blessings I have whether small or large! Thank you!!! Thank you for your inspiring words!
Shell, you are welcome.
Bless you as I sit here drowning in tears, this is what I needed today in this moment. God is good ????
Jessi, sending you hugs, and now that at this moment, I am praying for you. We all need to know we are not alone, and that someone gets it.
Thank you so much! It is helpful to know that someone else gets it! It’s so hard to understand, I know, if you haven’t walked it. I definitely appreciate your prayers. Blessings,
I really needed this. My caregiving burden is great and my support system is limited. I am actually having health issues of my own now as well. I am leaning hard on my Christian faith. Your blog, as well as those of some of your colleagues, keeps me uplifted. Thank you so much. God bless you and your family.
It’s almost 1am and I haven’t slept in days! When she doesn’t sleep I don’t sleep for fear something could happen . :(. I needed to read this so bad right now! I am struggling for the first time in 29yrs with needing some “me” tiime and feeling incredibly guilty about it! Thank you for the reminder to take care of myself as well. And thank you for this amazing article ! 🙂
Cheryl I’m prying for you!
I have almost hit a brick wall this week and was asking god to help me know I am on the right track and knowing I am doing everything and balacing when all seems out of place at times lately especially with myself then I come across this. I am not alone. I call it right now as well as when my beautiful daughter achieves something new my Thank You God moments so Thank you for this site
Beth, I am praying for you. You are not alone.