After taking Jane to Disneyland when she was 1.5 years old we knew that a future trip was not in her best interest (or ours). A full-priced ticket for a visually imparied, immobile child who is sensitive to too much stimulation and wants to lay down most of the day.. Ya, it’s not going to happen. (Do I detect a need for a Disney special-needs lounge? Couches, cozies, air conditioning? Call me.)
Fast forward 6 years and we are officially planning our first Disney trip! With only two of our three daughters. We knew it would be like this. I had made peace in my heart. And even when we first started chatter about taking our two youngest without Jane I felt assurance, “Yes! It’s to everyone’s best interest. We can do this!” I think it was even that very morning that I thought, “Wow, special needs does not dictate our life decisions. I feel like we have overcome so many milestones of grief! I am so emotionally resilient and experienced!”
Oh , Disney. You magnificent excavator of emotions.
The injustice of having a special needs child is highlighted when you remember the world is not made for them. There is no “easy” way to take an 8 hr road trip and spend 3 days at a theme park with a child like Jane. And if we remember correctly, which I do, oh so vividly, Jane hated Disneyland. If you’ve heard me speak or followed the blog for a while you may remember a certain curse word released into the air in the early golden hours of the afternoon during our last Disney trip. Sure, she may like it more now that she’s older, but at what expense? Her little sisters seeing Mom and Dad stressed? Stopping every couple minutes to accommodate Jane, prepping medications and missing out on rides so Jane is not left alone? Escaping to the hotel so Jane can lay down, and missing hours of time with them? The choice is not easy, but it is clear.
For the sake of the memories of her sisters, Mom and Dad have to make some really unfair decisions. Like deciding that when it comes to the family vacation, we actually have to leave behind a member of our family.
It’s not all sad. I have great memories of the long California road trip to Disneyland with my parents, and I am excited for our two youngest daughters to experience car snacks, rest stops and the feeling of seeing that entry sign for the first time. I can’t wait for them to remember that the world did not revolve around their older sister when they were little but that we actually poured time and energy into them, alone. They are worth it, and we are pleased to be with them and only them. Even if they never know the Jane sized hole in Mom & Dad’s heart during those times. I pray they never do.
That’s just how this life works. How the grief of special needs works. Things can be so beautiful and so unfathomably gut-wrenching at the same time. The magic will be palpable but the thoughts of a new memory without our favorite girl will be hard.
But the truth is , those two littlest girls will not be so little forever. When they are grown and having children of their own, it will still be Mom, Dad , and Jane. So for a real fleeting moment in time, it can be Mom, Dad, and them. Jane will be very happy. Cozy at home with Grandparents, being poured over with love and detailed attention. Our youngest daughters will be mesmerized and free to be exactly who they want to be for this special memory. And we will take it all in, without distractions or feedings or diaper changes or meltdowns. Well surely, there will still be meltdowns, adults not excluded. But hopefully no cursing this time. No promises.
Thanks for being so transparent in this. I can imagine how conflicted the emotions can be, but I’m happy for your family and this trip. Have fun!
It’s difficult, I know, but for a moment, take Jane’s special needs out of the equation and know this: it is perfectly okay to spend time with one or some of your girls and not all of them at once. In fact, it’s great for them to know that you value them as individuals, apart from their membership in the family.
Oh I know this feeling well, how many times has it broken my heart to not bring Hannah to things so that Emily can have a different experience of actually having a present mom or dad with her. It is such a unique grief, no matter how often I try to rationalize it away, it is definitely deep and still there. No matter how many times I remind myself that Hannah would be miserable, that this or that activity would not even be possible for her to even participate in, that it would actually just bring more stress instead of the joy that I desire for her to experience….. it still breaks my heart. It is even harder now that she is more aware when she is left behind, it makes it difficult to not feel guilty, except for the fact that Emily needs present time with her mom as well. It is a grief and re-grief situation every time. As you said so well, may my Emily never understand the depth of the hole that the absence of Hannah makes. I am so glad that you got to go with Rich to have this time with your girls. It means so much to them, thankful for the love and care of Grandparents… truly a gift from God ♥️
Wonderful healthy wise mama ! I love this.
And Jane has better parents with more joy because if this. Lucky Jane to have you!!