I have recently been reflecting on Brian’s journey that began almost 20 years ago and have been reminded that for as many steps of progress he has made, so much has remained exactly the same… If you asked me when Brian was first born what I thought his life would look like 20 years later, the answer then and the reality today are two completely different things. Keep in mind, we had no idea that a dual diagnosis of Down syndrome and autism even existed, let alone Brian actually being diagnosed with both at 2 years old. I believe there are reasons why we are not supposed to know what the future holds and even more reasons why it’s so important to have faith in a Higher Power, who I call God, when life throws you unexpected curve balls.
This journey with our special children will be filled with The Good, The Great, The Bad, and The Ugly, sometimes all in one day! Our rollercoaster experiences with Brian over the years repeatedly teach me to hang on for dear life to God for His grace and strength, especially in those dark places when times have been overwhelming and scary. I have literally been on my knees at times praying for courage and wisdom to help our son. Sometimes things work out the way I hoped: other times the answer is “no” or “not yet”. Yet, when I look back at all that has happened in Brian’s life and in ours, we have truly never walked alone and ultimately things have worked out as they were intended, even if we didn’t understand or agree with the outcome at the time. God has had an incredible track record of being extremely faithful to our family throughout all the seasons of our lives. I need to remind myself of this fact, especially in the midst of difficulties, that “ He will work all things together for good” because that continues to be the case.
Despite my faith, I am still scared of the day when I can no longer take care of Brian because of my own physical limitations. The daily struggle that all of us lead with our special children is real, along with the emotions that accompany each challenging episode, day after day, year after year….Sometimes, the good and the blessings don’t feel like enough. The sadness and depression are also real, as well as the disappointments and dashed dreams. So is the exhaustion and fatigue of physical, mental, and emotional caretaking of our children, especially as time goes on. Brian will never be able to take his own shower without assistance or manage any activities of daily living or self care on his own. I certainly wish he could, but that is not going to change, though there will always be ongoing progress. The thought of assisting Brian with these needs until I am no longer able to often overwhelms me, yet relinquishing this role to someone else is just as difficult.
These truths have been weighing especially heavy on my heart this week. I think they are always there, just below the surface, but I’m reminded of the “ downside” of raising Brian, especially when I’m sleep deprived. Lately, I have been struggling with getting enough sleep, a common problem for millions of parents. I find it has become more of a challenge as I get older, so I am trying to find ways to improve the duration and quality of my sleep. When I don’t get enough of it, the world becomes a dark and exhausting place and caring for Brian becomes a huge challenge.
A friend had shared with me a while ago the acronym “HALT”- are you Hungry, Angry, Lonely, or Tired? That is an excellent question- sometimes I’m all 4 things at one time! Even experiencing one of the four can determine how the day is going to play out if I’m not aware of what I’m feeling and then doing something about it. We special parents particularly have a tendency to put our own needs on the back burner when caring for our kids, but if we ignore HALT, it can ultimately be at our own peril.. It is not an option, but an imperative that we eat healthy meals, acknowledge our anger when we feel it, (so we are able to move forward), reach out to a family member or friend when we feel lonely and finally take naps and get to bed earlier when we are tired.
For years, I felt guilty about doing such things, as I thought it would be taking away time from Brian. However, becoming burned out, exhausted, and irritable were red flags that what I was doing was clearly not working and I needed to do something different. I am a work in progress, but I am choosing to change those things in my life that I can, one day at a time, like the aforementioned, knowing that both Brian and I will be the better for it. Plus, I’ll accomplish what I set out to do with a positive attitude and more patience when I’ve eaten and rested properly. These are things I can change, but there are certain things that I will always be powerless over. I have a choice to make: try to control uncontrollable situations/ people or surrender and accept them. I am learning that true surrender and acceptance of one’s daily hardships doesn’t mean defeat, rather, it is the beginning of true peace and the ability to live each day in freedom, despite how we may feel in a given moment. Feelings are not facts and are often fleeting, but they are not the end game, thank goodness! Our emotions are reminders that we are human and signal that something is right or wrong and that we have choices to make.
12 Step programs like Al-Anon, provide a wonderful road map to follow for those effected by someone else’s behavior. While originally intended for family and friends of alcoholics, I believe the first 3 steps of Al-Anon can also be applied to parents/caregivers of special needs children:
Step 1 – I admitted I was powerless over Brian and our lives have become unmanageable.
When I substitute “Brian” for “alcohol”, I see the truth of this step. I can’t control the fact that Brian is disabled and how his disabilities effect his life in multiple ways. Our lives have most certainly been unmanageable at times as a result. I wish I could eradicate his diagnoses with a magic wand when I see the struggles, experience the setbacks, and think of his future. It can all be very frightening. I may not be able to control these challenges, but what I CAN control is MY reaction to them, as well as my actions. When I make the choices that will benefit Brian to the best of my ability, our lives become much more manageable.
Step 2- Came to believe that a Power greater than ourselves can restore us to sanity.
There is no doubt in my mind that there is a Higher Power at work in our lives. Sometimes, God chooses to work behind the scenes, through the love and support of others, or through the resources that He provides. Over and over again I have seen such goodness and miracles in Brian’s life that have increased my faith and have given me hope, gifts that I hold on tightly to especially when difficult times or a crisis hits. This is my sanity, my hope, that enables me to get out of bed each morning and face another day, otherwise it would be too hard..
Step 3 – Make a decision to turn our will and our lives over to the care of God as we understood Him.
Step 1 is: “ I can’t”, Step 2 is: “He Can” and Step 3 is: “I will let Him” The acknowledgment of our human limitations is very freeing. That doesn’t mean that we don’t do anything, in fact, we special parents are some of the strongest advocates on the planet. Our children depend on us to act on their behalf, every day, in multiple ways. It is a huge responsibility and some of the most exhausting work that I have ever known. Advocating and taking care of our children is intense, relentless, and often tries our patience. It is not at all for the faint hearted, but we don’t have to journey alone…All that is required is a willingness to allow our Higher Power to guide us, give us strength and grace- no matter what marathon we are running – and He will!
Until next time, thanks for reading! 😊