Brian and I just returned from a fun weekend at the Great Wolf Lodge in the Poconos, PA. If you have never been, I highly recommend it- Water Nirvana everywhere! Brian couldn’t get enough and would still be there if I didn’t physically prompt him to leave! 🤣 We were waterlogged and weary by the end of Day 3 , but so happy for the opportunity to try something new. I was so proud of Brian for handling like a pro most of the changes and transitions that an experience like this offers. You just never know how a major change in routine and environment is actually going to go down until it’s showtime! These factors can be a major challenge and very stressful for special needs families. I was on my own for the first time with Brian, as Jim was away in Japan on company business, so my anxiety level was quite elevated. Brian is a young man now, taller and stronger, and not as easy to handle, especially during a meltdown. Predictably, the initial transition into the facility was difficult and overwhelming for a few minutes, but the supportive Lodge staff, amenities, and promises of a gizzillion gold fish crackers, iPad privileges, and swimming eventually helped and WE WERE IN!!! Phew!
During the course of our stay, we met up with other special needs families, as well as families with typical children. It was such a great experience to meet folks from the tristate area who share certain commonalities, and just as interesting to meet others in which there were no similarities whatsoever. It was during one of Brian’s difficult transitional moments going from one part of the water park to the other that I was approached by a woman who I quickly surmised had a very different journey than mine. Our conversation went something like this:
She: ” I’ve been watching you in awe for the past few minutes and don’t know how you do it”.
Me: ” Do what?”
She: “Manage your son like you do.”He is so adorable, but strong, that’s got to be tough!” Are you here alone?” ” I give you a lot of credit, I could never handle what you have to, you’re such a great Mom”.
Me: ” Thank you, I’m sure your right about that, excuse me, have a nice day”.
I have had similar conversations periodically in the past with other parents. Most special needs families that I know have had them too. I don’t fault people for their fascination with Brian and I understand why they ask a lot of questions. He is a very cute and curious creature! But this time, it was the “pity pat” on the shoulder and The Look, you know what I mean, it’s the ” I feel so sorry for you”- that triggered very unexpectedly those feelings of loss and sadness that I thought I had resolved a long time ago….
Everyone has or will face major loss at some point in their life. Losses can vary in size and scope and are painful. Losses create sorrow, cause grief, and can test our very character. Brian’s arrival into the world was a simultaneous mix of elation and deep sadness. Delighted to blessed with such a beautiful boy, yet grieving the loss of the dream that we had hoped for. Feelings of guilt and shame for even saying such things. Oh, those early days especially were a cesspool of fear, doubt, and anger- why him? Why us? Overwhelmed by the medical needs of our baby who needed open heart surgery and so much more… those losses were deep and profound. So many times I just didn’t want to feel the pain anymore, so I immersed myself in the world of being Brian’s Advocate and Medical Director. I didn’t have time to feel sorry for myself, there was just too much to do.
We eventually moved to our current town. Eighteen months later, my husband lost his job and was out of full time work for over 3 years. I was diagnosed with colon cancer less than a year after Jim lost his job. Brian had severe sensory issues back then and was having difficulty settling in at school. Multiple school visits, conference calls, surgery, chemo, and job interviews. No time to process these losses, too much to do!! Keep on keeping on, hang in there, keep the faith, and all those other platitudes that are well-intended and are meant to be helpful.
Predictably, the “crash and burn” phase inevitably occured, because major losses in life can not ultimately be ignored. You can run away from them, play hide and seek with them, but eventually the grief from the losses will get you and of course it’s at the most unexpected and least desirable time. Funny how that works. My showdown with grief and loss occured long after Jim had finally landed a good job. Brian was in an appropriate school placement, and my cancer was history. It was a dark, terrifying depressing time, like being in a deep hole with no lifeline. I thank God for counselors and medications! Eventually the sun came out again, but the struggle never really goes away..
There are several lessons I have and continue to learn about losses and grief: 1. Both are an inescapable part of life 2. Don’t deny them, lest you pay a heavy price, 3. You are stronger than you realize, 4. You will be refined in the fiery furnace with a new armor of compassion for others, 5. You may lose an emotional battle, but you will ultimately win the war! 6. Grief can easily be triggered when you are reminded of old losses, but these moments are also an opportunity to see how far along you have come despite them, 7. You never walk alone- God and His resources are there to help you, now and always…
On a final note, I have learned through experience and mistakes what NOT to say when I see others going through a major loss:
1. I understand what you are going through-( how is that even possible?)
2. Everything will work out just fine-(Well, that’s not always true. Life is sometimes not fair).
3. Try not to worry- give me a call if you need anything- Of course, you worry, you’re human! And the person struggling will never call, by the way.
It’s understood when people say these things that they have the best of intentions and don’t know exactly what to say. Consider the following in lieu of platitudes:
How can I help? What did you need? Let’s make a date to get together. I can watch your kids on…. I’m going to call you next week, send cards, etc, anything and everything that involves self-care for healing for the person who is struggling with loss. Finally, just listening helps so much! You don’t have to have the perfect answer to the loss, just a willing ear to listen and a compassionate spirit to understand- but please, no pity!!
All of us will need support through losses in life, regardless of who we are. Those of us with special children are more susceptible, but no one is immune from the grief that accompanies losses. It is a question of when and how we respond to the grief that will determine how we effectively cope. Better sooner than later for sure! Self care will always be paramount for the long haul. When others support us in this quest, and visa versa, all of us are stronger and more able to weather the challenges that will be thrown our way. I know I can’t live my best life otherwise…
Thanks for reading, until we meet again…❤️😘😊