Fearing the Future as a Special Needs Parent
As my daughter and son grow, I often find myself dreaming of their future. I image them leaving for their first dance, being behind the wheel of the car for the first time, falling in lust (teenage love), throwing their caps in the air at their graduation ceremony, and planning their own futures. One thought leads to another and I picture them getting married, raising their own children, all while discovering who they really are. Always hoping that whatever the future holds, it is their best life. Lately, the image of my daughter appears blurry. Severe anxiety has wreaked havoc on her young life. Instead of clear images of my sweet baby swept into a teenager and then a young adult, my vision is hazy to the point where I no longer recognize the sight. This hazy vision is all too common for a special needs parent.
Even though anxiety is as common as the air we breathe, I find myself unsettled as soon as it rises from the shadows. These past few months have been quite blissful, considering where we have been. We have had many more positive moments than negative ones. Maybe that is why last Saturday night, after my daughter’s unexpected anxiety attack, the thoughts of her future took hold inside me so tightly. In these moments, all I see are the blurry images of her future. They create sadness and fear so strong that it nearly brings me to my knees while the sobs escape my chest and tears stream down my cheeks.
Sadly, it is an image that too many special needs parents face…the unknown future of a child with a disability that has no cure yet holds an incredibly positive promise with the right treatment. If I am able to remove the fear, I do believe that her future is still one of happy adventures and independent successes. How she gets to that future is full of questions and what she misses along the way is vast. My fears are very real right now. I know any special needs parent reading this understands.
When she was 7, I never once questioned the future. Inside, I felt this was a momentary illness, that with time and treatment, would end, and life would go on its happy way. The thought that, 6 years later, we would still be dealing with nearly the same issues is mind-boggling to me. I say this knowing that there have been many wonderful moments in our life.
Today is a million times better than last year is at this time. Thinking of where we were a year ago, I could be happy if I was told that this was as good as it gets. But here’s the thing…we don’t know how good it can get. I want the very best for her…a lifetime of health and happiness. To me, based on research and discussion with doctors and therapists, her anxiety can still be managed better and her overall mental health has a tremendous area to improve. What that looks like though, no one knows. And that is scary.
My heart breaks when I think of what she has missed already in life…birthday parties for friends and herself, classroom experiences, lunchroom camaraderie, the 8th grade Washington DC trip, sleepovers, late night phone gossip with a best friend, and so much more. With high school just around the corner, the idea that she misses teenage rites of passage like your first kiss, Prom, Friday Night Football games, learning to drive, or visiting college campuses, is almost too much to bear. I am far from the person I was in high school, but I know that those experiences had an influence on who I am today.
Seemingly insignificant moments to an adult are momentarily earth-shattering to a teenager. Through those moments, teens learn to overcome adversity, stand up for themselves, resist peer pressure, what makes a true friend, how to prepare and study for important tests, the list goes on. How often, as an adult, do we reflect on those moments either during a conversation with friends, a television show, a song heard on the radio, or as a parent when our own kids reach a certain age?
I remind myself daily that nobody, no matter how healthy, has a truly clear picture of the future. For some, the path will be relatively straight and focused. For others, like my daughter, my hope is the haze fades with each passing day. While it is important to look ahead, seeing the overall goal, it is more important for me to focus on what we have and what we can do to continue the positive path we are currently on. Time may not always be on our side, but we can do nothing to stop it. And that is why there is so much fear as a special needs parent.
She has this incredible light to share with the world…the world is hers to take. She can be a stand-up comic, a special education teacher, a mother and wife, an inventor, a detective…she can be anything. I hope, more than anything, anxiety does not rob her of the future that awaits. The world deserves to have her whole self in it.
I have been reading your blog more often lately as we mark the 1 year anniversary ( ? no party, no gifts) since our daughter was diagnosed with OCD. Last hear at this time was absolutely brutal and I honestly didn’t know if the next day would bring an inpatient stay somewhere. To watch my daughter suffer from invisible scary thoughts that traumatized her was so heartwrenching for me. I finally decided to go to therapy after a few months of agnonizing over my daughter’s condition and try to get familiar with uncertainty. The path that both of us were on was actually the same- one of accepting the unknown and being okay with that. One year later she too is in a different place, taking those brave brave steps to get up in the morning, face the day, go to school, face her fears, do her ERP therapy despite the anxiety it brings, etc. She is so much more than I ever gave her credit for. Our road is long- I too don’t know if she’ll enjoy what we consider teen milestones- the prom, driving, etc. but I know that I’m more comfortable these days with “one step at a time” than I ever was before. I’m learning how to be a better parent, a better listener, to be the parent that my daughter needs me to be, not the one that I THINK she needs me to be. Everyone’s journey is so different and to try to compare ours with someone else’s that we think may be “better” is futile. I wish you and all the parents who love our kids so very much the strength to face every day with hope and acceptance and at the end of the day, know that we’re all doing the best we can.
Wow. This brought tears to my eyes because our paths are so similar. The unknown is just so scary but we must accept that each day is a new day and we cannot control what happens. I absolutely love how you say that you are the mother that your daughter needs, not the parent you think she needs. This is so hard to grasp sometimes for me but so very true. Thank you for sharing your honest story with us.
As the mother of a 15-year old son with severe anxiety/OCD/depression, I sob every day thinking of the future. My feelings swing from “he’s only 15, he has plenty of time” to “oh my god, he’s almost 16 and he’s already missed so much and this summer he’s supposed to get his permit, be a camp counselor, hang out with friends and break curfew, find his first love”. But the truth is, he can’t even walk into a Target without having a panic attack. Every day is a struggle, and there are the really bad days that wipe out any hope of a “normal” future for him. But, we do have a few good days now and then where I see a bit of hope. Those are the days I need to hold onto.
Oh, Sarah, I have had months where I sobbed every day too. Last year at this time, my daughter could not walk into stores either. We have been there and it is the worst. You are not alone! I really had to learn to only focus on the here and now because the what ifs of the future were too much to handle. My daughter has missed out on so much in life already and I know that, even though she is so much better, she will continue to miss out of some things. Focusing on the small moments can help but it can be hard. Have you found any therapy/treatment that helps with the mental illness issues? It took us years but for us, finally having the right therapist and medicine combination, we are finally living a mostly stable life. Please let me know if I can do anything for you or if you just need someone to talk to who understands.
I can tell you one thing – your daughter is so lucky to have a mom like you in her life. Your love and commitment is heart warming. I’m sending a big virtual hug to you and your daughter in hopes that next year you will look back again and see how far she’s come. xo
Ah, thank you. I love the idea of looking back a year from now and seeing even more progress! Thank you for the inspiration.
You are amazing and doing an amazing job. Continue to be there for her and reassure her and love her.
Thank you. I will forever!
Wow, this must be very tough. As a daughter who watched her mom battle depression, I can’t even imagine parenting a child with severe anxiety. It sounds like you are focused on the right things to help her through it!
Thank you. It is hard but we are making progress. I am sorry your mom struggled with depression.