Terrifying Transitions for Special Needs Families

Hello friend! 

Oh, summer – what mixed feelings I have for you. Summer tends to be a time most get to take a deep breath, plan vacations, visit relatives, work on tans, participate in traveling sports teams, open up lake houses, take out their boats, or plan camping trips. It’s a season when time slows down a bit. 

Our youngest son, T.J., graduated from high school last week. We are so proud of him. He not only graduated high school but also worked his hind end off doing it. He did it in regular classrooms with the help of his aides. Over the past 11 years, we traveled for doctors’ appointments, clinical trials, and had numerous surgeries, all where we would work on homework on airplanes, in hotel rooms, or even while he was hooked up to a 3-hour infusion drip. His teachers, facilitators, and aides worked tirelessly to catch him up when he returned. 

Here we are getting that dreaded question, “What are your plans next, T.J.?” Don’t get me wrong; part of me is happy people ask because it keeps him focused on the next steps and his goals. But there’s a part of me that wants to hunker down in a corner, squish my eyes closed, and cover my ears with my hands like a toddler and say, “la la la la la” so I can ignore the situation because we don’t know what his next steps are. 

It’s just not that simple for him. College doesn’t seem like an option for several reasons I won’t go into right now, but maybe it will be in a year or two. We will never tell him “no” if he’s willing to try. His physical limitations and how quickly he gets fatigued limit what he can do in the workplace; however, if anyone can find a career, it will be T.J. He is exploring options and has some incredible ideas he’s excited about exploring. The thing with T.J. is he usually needs help being directed, specifically regarding executive function. Thinking through steps and stepping out of his regular routine is difficult, and this causes anxiety daily, multiple times per day. I have my own home business, so it can be anxiety-producing for all involved. 

If there is anything I have learned over the past decade of being his mom is this – don’t borrow trouble. Don’t anticipate problems. Take one day at a time. (If you know me personally, you know I am a planner, and this is sooooo difficult for me!)

I think back to when we first got his diagnosis. We were told many things about what to expect and what not to expect. I look back over this past decade and realize that if I had listened to the “what ifs,” the “most likelys,” or the “probablys,” our lives would have been one long miserable waiting period of terrifying transitions based on others’ presumptions. Instead, we paved the way based on our trust in God’s truth and grace. 

Sure, we did our due diligence and planned for what we could. We have tried to make as big of a difference for T.J. and others on this side of Heaven. We advocate, try to help researchers, figure out new ways to care for our son, and be proactive in his care. However, we don’t try to control the outcome of his life. 

So, as I transition to this new stage, I will also transition not based on fear but on fortitude. I believe Satan uses my fear against me. If he can keep me cowering in the corner with my hands over my ears, I’m not listening to God’s voice. If I’m cowering, I’m not standing, ready to battle for my family or myself. 

I don’t want to be the mom who cowers or tip-toes ahead in trepidation. I want to forge ahead with the strength of God wrapped around me like armor. With that in mind, I know I must “put on” the armor of God. I must choose to deliberately utilize each piece, knowing I will be protected. 

Notice, I didn’t say that I won’t be fearful; I simply said I won’t let Satan use my fear against me. I will not go into this next season based on fear. 

Read Ephesians 6:10-18. The apostle Paul talks about how the enemy will scheme when you are at your most scared, most vulnerable, most confused, and most overwhelmed. It is in these moments that we must choose to utilize to turn to God and deliberately put on the FULL Armor of God: the belt of truth, the breastplate of righteousness, shoes of the gospel of peace, the shield of faith, the helmet of salvation, the sword of the Spirit (Word of God), and prayer.  

I think I speak for all three of us when I say that Amy, Carrie, and I have had to get down on our knees numerous times and pray, asking God to help us put on our armor, readying us for whatever battle is coming next. 

That is one of the reason’s I wrote our new book, “The Other Side of Special: Navigating the Messy, Emotional, Joy-Filled Life of a Special Needs Mom.” I know the vast array of emotions that come with being a special needs mom (heck, with just being a breathing human being).

We are emotional beings, which gives us the ability to connect to other people and God on an intimate level. May we never lose that. 

This month, Amy, Carrie, and I discuss why we wrote the book and how it came about to actually being. If you haven’t had a chance to listen, tune in and listen to this month’s podcast episodes!

We also have a FREE 5-day devotion, “Hope and Encouragement for Special Needs Moms,” on YouVersion’s Bible App! Download the app and check it out.