Each one of us has a life story that is unique and ours alone. Most likely your story includes trials, tribulations, the mundane, the incredible and everything in between. Peppered throughout all of these experiences may have been great loves in our lives, and profound losses, as well as grief and fear. All of these things are a part of the human experience and have the ability to shape us, strengthen us or destroy us: sometimes all three of these things happen, depending upon our circumstances.
Hopefully, we can learn somehow to continue to live life on its own terms, especially when we experience a major shift in our world as we know it. The passing of a loved one is a tremendous loss, where we, and our lives, are never quite the same afterwards. There are also losses/disappointments, though not as profound, but are nevertheless life-altering. Inevitably we all will have to face the emotional pain of life -changing losses- the question is how? What do we do with the grief and its pesky partner, fear, that often comes to call during these very difficult times?
My Mom’s recent passing brought all of the aforementioned back to my mind, heart and soul. I have learned to let grief have its way with me; to no longer deny it, but to accept it for what it is. Grieving proves that I am living an authentic life, as painful as this particular time is. Grief is the price of love; the stronger the love, the deeper the grief. This is one of those times and the same was true when my Dad passed away almost 12 years ago. I feel so blessed to have had such good parents and know that I will see them again one day in Heaven- this is both my solace and my hope. In the meantime, I miss them greatly..
My first experience with deep grief was after Brian was diagnosed with autism at 2 years old. I had a very delayed “grief reaction” to this diagnosis (more on that later). But before the autism, there was his initial diagnosis of Down syndrome at birth. I already had an idea that this was a strong possibility based on markers during the pregnancy, some of my own reading along the way, and my instincts…
I remember crying a lot several hours later after Brian’s birth. I was definitely grieving, but I was ultimately hopeful that Brian would thrive and live a good life, based on what I knew about his disability and my personal and professional experiences with the disabled -and he has! However, all of my preconceived notions, hopes and dreams went out the window when the neurodevelopmental specialist said that Brian had autism 2 years later. Initially, I felt numb and wasn’t processing fully at the time exactly what the doctor was saying. I was on the outside looking in at my life with total shock and disbelief. I was also scared to death of Brian’s future and what that would look like and still struggle with that to this day..
Despite my fears, there was no time to grieve – Brian’s diagnoses was a call for action- ASAP! Open heart surgery, Early intervention, more ongoing medical challenges, special education, ABA therapy, advocacy, etc. Many special needs parents are beating the same drum, day in, day out, for years on end. Our disabled children’s needs are all encompassing that way, every day, for the rest of their ( and our) lives. Yes, grief and fear would just have to wait, (got to go to that next doctor or therapy appt) but, ultimately, both would have their way with me..
I ignored the grief and fear for a long time. I didn’t want to feel pain and I was afraid I wouldn’t be able to handle what I might discover about myself and my limitations. I wanted to move forward, get on with helping Brian be the best that he could be- that was easier- but so exhausting! I was a caretaker, but forgot to take care of myself in the process.
I didn’t want Brian to miss any opportunities for improvement. Subconsciously, I set expectations and goals for him and myself that were in the long run inflexible and unrealistic. It was sheer madness when I look back on it now and I kept this all going for a long time. I may have looked like I had it all together on the outside, but I was actually dying on the inside..
Eventually, exhaustion got the better of me several months in the post autism diagnosis and that’s when grief arrived in a big way. The therapies, the doctors, special education and behaviorists, and Brian’s sensory overload to everything around him finally broke me one day. Gut wrenching grief that opened my eyes to my denial and anger over Brian’s disabilities, which eventually transformed into bargaining with God out of fear, then ultimately, and very slowly, the acceptance of what I could not change and the courage to change those things that I could by the grace of God. I finally came to the end of myself. The Christian faith that I was raised in had always played an important role in my life. I knew that with God all things are possible, but lost my way for a season. I also knew that I needed to trust Him, despite the grief and in spite of myself. I was finally ready for help…
It continues to be a daily surrender and choice to trust God for all of the details of Brian’s life, especially the parts that I still grieve over. The hopes and dreams that I had for him will not necessarily come to fruition in this life, but I am learning continuously to be flexible and open to all possibilities and miracles…and to have peace with it all, regardless of how things will be. That is important, because the alternative is despair and hopelessness- been there, done that! I am a work in progress, but it is much better than it was once I was ready to surrender and relinquish control of what I could not change.
I know that I don’t walk alone in my struggles as Brian’s Mom and never will, regardless of what happens or how I feel. My Higher Power is always with me.. I believe that God has a plan for each one of us, even when we don’t necessarily understand it and especially when He seems to be so silent- it often is in those particular moments that God is in absolute control, working diligently behind the scenes on our behalf.
God’s timing and ours don’t often align, but there is generally a good reason for that too. Is it easy to trust Him? Definitely not! But His track record in my life is a solid one, based on the strong evidence of His faithfulness, especially during those times in the valley. When I look back at the tapestry of my life with total honesty, it was especially in the most difficult moments that God ultimately provided a way to move forward. It may not have been the way I expected or necessarily wanted, but things ultimately worked out in their own time. This reassurance is the fuel that keeps me going one day, sometimes one moment at a time.
One of my favorite verses in the Bible is from the book of Jeremiah, Chapter 29, verse 11: “ For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. Grief and fear can make you feel hopeless and rudderless. A future without hope and plans will absolutely crush the heart and soul. But God will meet us and walk with us through our grief. I don’t know what the future holds, but I know who holds my future.. God will restore our hope and give us a future even when we don’t feel that this can possibly happen. All He asks is for our willingness- He will do the rest, one day, one moment at a time..
Until next time, thanks for reading! 😊
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