Parenting a child with special needs requires understanding and communication from your spouse. You have to remember that you both are on the same team. You were on the same team before your child entered this world, and staying on the same team is important. This is important for parenting in general, but absolutely vital for parenting a child with special needs.
One of the goals for Rob and I with this site is to help encourage and strengthen marriages and families by being honest about our struggles and helping you realize you’re not alone in your feelings and you can have hope and overcome whatever current situation you are facing.
1. Don’t blame your spouse
When Reagan had her crisis, there was some blaming on my part, not in a purposeful way; but through some of my feelings and in dealing with my grief, I unintentionally hurt Rob.
Rob created spreadsheets for us to track Reagan’s food and since her diet is so restricted, and we relied on these spreadsheets to calculate how much protein she was having in a day, we wondered if the menus we were using on a daily basis failed us. My questions about the food made Rob feel like I was blaming him, which translated to, Rob you failed. He 100% didn’t. He worked so hard on those spreadsheets and we still use them to this day. There are over 500 pages of menus that we’ve kept track of, every single day of her life since 2013.
Just recently, almost four and a half years later, I had this epiphany of how Rob must have felt in those first few months after Reagan’s crisis. I couldn’t let go of thinking it was the food for probably close to a year. I wanted my hurt and anger to go somewhere, and it was misplaced on Rob’s shoulders. In our journey, there came a point that we had to really trust that God knew what he was doing and that this was always the path. We gave the burden of guilt we were both carrying to God, and we put it squarely on his shoulders so that we could begin to feel freedom.
2. Don’t hold your feelings in
But don’t unleash them in an unhealthy way meant to hurt your spouse. You can’t fake your feelings or mask how you’re feeling and allow bitterness to bubble up in your heart. No one can understand how you’re feeling, unless you share it. And the person who likely will be the best one to truly empathize with how you feel, is your spouse, who is going through the exact same thing.
Being thrust into the special needs parenting world is different for everyone, but also an unexpected place to find yourself. I don’t know that many people expect this to be the turn their life takes.
It can be scary. Let that emotion breathe.
It can be amazing. Let that emotion breathe, and all the emotions in between.
Grief. We dealt with a lot of grief and went through all those stages (denial, anger, bargaining, depression and acceptance) more than once. It’s OK to go through all those stages and feelings. I implore you to include your spouse in each and every stage and to go through this together. Two is greater than one. You’ll find that you may never be in the same exact stage at once, but that’s why you need one another, when one is angry, the other can help you move closer to acceptance. It’s a constant pulling, helping one another get up the next step; it is a beautiful thing to walk through this together, and come out stronger.
3. Don’t forget to dream
Things are different than you dreamed they would be. One thing we continued to do is dream. It was very hard to dream and we didn’t do it right away. A lot of fear was clouding our ability to dream.
Will Reagan ever go to dance class like me? YES.
Will Reagan ever go to school and learn? YES.
Will we ever get on a plane to go on a vacation? YES.
Will we ever be able to go out to eat in public? YES.
Will we ever be able to sleep through the night? YES.
These were total pipe dreams after Reagan’s crisis. But we pushed, not knowing that our every day grind was moving us closer to making those dreams a reality.
Dream of the things you CAN do right now, vs. what you can’t do. And keep moving forward. Every inch of gain is getting you closer and closer to the dreams you never thought were possible. Talk with your spouse about how you can accomplish new dreams. If you see something that is missing, carve out a new program, push opportunities you dream of forward.
Don’t forget, special needs families and children, we are all fighters. Don’t let that fight die when it comes to your dreams, let it be the driving force.
You can do this life. You only have one life so make the absolute most of it, and keep dreaming.
Jesus came to give you life and a life more abundant. - John 10:10