We fight conditions & disorders through knowledge & community.

  • Wed 22 Mar 2023
  • Wed, March 22, 2023

Daring to Hope

MomandBaby2I’ve always been a seeker of knowledge and information. When I became a mom it definitely kicked this trait into hyper-drive.  Of all the things I’ve learned and experienced, the special needs community was something I knew little to nothing about. By now, I’ve run the gamut on research and I’m still going strong.

Some of the first meaningful pieces I found in regards to my personal healing came from other parents.  One of the first is by Kristi Campbell titled, ‘What It Means To Be a Special Needs Mom‘ and another, by Emily Perl Kingsley, called ‘Welcome to Holland’.

I did not seek out these stories for my personal benefit.  Initially, it started out as another search for an answer, fix or ‘cure’ and the thought of taking care of myself was nowhere on my radar.  In my mind if I could just heal my daughter of her struggles, I would be okay again by default; so naturally, those were the answers I was seeking.  I didn’t realize just how unhealthy I had truly become because of this type of thinking (or lack of thinking).

As I found testimony from other parents, a couple of things happened.  First, it felt really good to hear someone say what I had been silently feeling for so long. I was terrified to admit to or acknowledge my own feelings up until this point – a type of denial that was exceptionally unhealthy for me. Secondly, I realized I had nowhere near the type of clarity or positivity these caregivers have, but I knew I wanted it badly.  Reading their stories made me understand the value of being healthy and that my well-being is crucial to my child’s success.  

I found these pieces of their memories to be profound and beautiful at a time when seeing beauty did not come easily. They are eloquently written and inclusive of details in a way that I could only hope to but never achieve so beautifully.  I feel a camaraderie with these women although we have never met.  I read their words and I understand them to my very core.  I understand the confusion, desperation and pain they write about and also the hope, beauty and resolve.     

As for me, even my closest friends and family members will tell you I keep my cards close to my chest.  Sharing my feelings does not come easily or naturally for me but my desire to reach out and help others is forcing me to step up and away from my comfort zone.

I want to break the isolation that can sometimes occur when you receive devastating or shocking news and you have no idea who can help or where to turn because you don’t know anyone else who has been through it.  Sharing your story with others who have been through it can be incredibly rewarding and uplifting.  It can help encourage you and give you strength.  The more people you meet and speak to who have been there, the more knowledge and confidence you will have to be the best caregiver you can be.  It can supply you with strength when your reserves are completely empty.

After finding these articles, I began my journey of reaching out.  It didn’t happen overnight, but as soon as I was ready, I began to meet with others who were going through similar circumstances.  I found this to be a tremendous help in putting some of the missing pieces in place for me.  Among many things, the sharing of resources, the sense of being understood and being in a judgment free environment all contributed to building me back up again.

As I reflect back to the beginning, I see a person struggling to hang on. Barely even a shell of the person she use to be while doing her best to maintain a brave and unaffected face for the rest of the world to see. She is heartbroken, frightened, sleep and nutrient deprived. I see her at the end of her rope with almost nothing left to hold onto to. Refusing to let go only because her love for her daughter was far more powerful than any affliction her child would have to bear.

No one knew just how deeply I hurt – not even me. I was broken and I had to put myself together. I had no idea where to turn or how to do it but not doing it wasn’t an option. I would have to pull myself up with the limited power I had left and keep searching for answers. A thoroughly exhausting and frustrating endeavor because for the first time in my quest for knowledge, I repeatedly came up empty handed when it mattered the most. I was completely disoriented by what seemed to be an apparent lack of resources.

Now I can see that I was being torn down and broken a part for the greater good, a requirement of my transformation process. I had to be gutted of outdated ideas, beliefs, clutter and anything detrimental to progress.  Those things had to go. I mourned for some of them as they left but I needed the room.  I was being reconstructed, remodeled and updated with new software.  I have been upgraded with new terminology, acronyms, information and knowledge, with new insights, more compassion, empathy and appreciation for things I would have otherwise missed.  I now find joy in smaller things than I used to.  I am far less judgmental and far more compassionate.  I have stronger and more meaningful friendships.  I stand tall outside of my comfort zone with purpose and conviction. I have hope.

I also have more going on now than before, including a lot of stressful things, yet, because of my new upgrade, I am happier than before too.  I gained the ability to appreciate smaller things and I gained perspective on what is and is no longer a big deal.  Some of the things I used to think carried monumental importance are now a welcome walk in the park on a lovely spring day and that, among so many things, gives me a hefty amount of gratitude.  I have also found immense joy in helping others who have found themselves in similar circumstances.  Helping someone avoid even a shred of that frustration is the best medicine.

I still surprise myself sometimes when I write an email or speak with someone to realize how much I’ve learned. Yet despite what I have picked up, I am barely scratching the surface. I know there is still so much and there is never going to be an end to all I need to know and therefore, I will never stop seeking.  This is a lifelong journey and I have to be relentless. 

Despite my upgrade, a few things remained the same.   Chief among them is an admission I must make that is no easy task for me and that admission is this – despite my best efforts to prove otherwise, I am not always strong.  I still have dark moments from time to time and I suppose I always will. I am almost certain I have times ahead when I will feel like breaking down again.  But I have hope now that it will be okay.  I will remind myself that I am being prepared for another, even better upgrade and I will come out of the other side better because of it.  My community of friends will be there for me as I have been for them.  Because for me, the only thing more difficult than watching helplessly as your child struggles or suffers, is doing it alone.