Our magic number... 25.

Now and then I’m asked that one question that I’m yet to answer without tears welling up in my eyes, often catching whoever curiously asked completely off guard.

“What’s the hardest part about raising Parker?”

I’m sure many would guess my answer would be his aggression, anxiety, maybe the battles with the school over the years, waiting years for him to talk, or maybe even watching his peers move on in life but all of those are wrong. They aren’t easy but certainly not the hardest part.

The hardest part is a simple, two-word answer that I can’t even type without tears. “The future.”

Right now, through the very best of days (which we have a lot of – Momma’s of littles – hang there, way better days are ahead!) and the very I wish we never had moments that are not so good, I have the ability to protect him. We have our very happy, sometimes quirky, routines and life. It works, very well, for us. And, quite honestly, I would be very happy and content doing this forever.

But, I can’t.

Shortly after Parker was diagnosed I read a story. I can’t remember if it was in a local newspaper or through a link online to a magazine like “Woman’s Day” or something. It was a long time ago. While I don’t remember where (although I wish I had saved it) I remember exactly what it was about and it forever changed me.

It was the telling of a family who had 2 sons with intellectual disability. Their entire lives they lived at home with their parents. They had, no doubt, a great life. There was no question to how very much they were loved. This was, however, all they knew. One day one of the parents died, I think the father but it doesn’t matter, and while extended family expressed concern the living parent refused to move the now elderly adult sons into a home.

The men were in their late 60’s. The parents in their late 80’s. A few short months after the first parent died, the only person left in their life - the other parent - died too.

Within 6 months these 2 men with intellectual disabilities who had only known one home and one life under the care of their parents, had lost their entire world. Everything. Both parents were gone.

The men were placed, together, in an assisted living facility. It was an incredibly challenging transition that took its toll on the multiple places who attempted to bring them in and on the men, themselves. They had no idea how to function without their parents. They were thrust into a world they did not know and could not understand.

The story didn’t have a happy ending. No great tale of how the men adapted and thrived. It continued on chronicling their ongoing confusion and struggles. It never ended. They never settled in and found a new routine and life. They simply survived, barely, at best and not for long.

The article took all of the air from my lungs. I could not breathe. I could only cry. I knew what this meant. 

Up until that point, I had said, adamantly, to everyone that Parker would live with me forever. And at that moment, I realized,  he could not. There was no way, no way at all, that I would ever do this to him. No matter how much I want to protect and shelter him, I cannot keep him from the world but, instead must teach him to survive in it and thrive, successfully without my by his side.

It was then - early in his diagnosis that his dad and I came up with the magic number “25”. That by Parker’s 25^th birthday we would be sure he was living as independently as possible outside of our home.

25 felt right. At 25 he would still have us as a safety net. We could make the transition slowly and find the best place for him. It would be like going off to college like his sister will be doing. And most of all, we would be able to see him be successful, on his own (however that would look, likely at a residential facility) and know that when the time came and we were no longer here, he would be ok.

It’s a plan that we’ve been set on for what feels like forever, without any doubts or uncertainties of this plan.

And then… he turned 18. His class graduated high school and I was granted guardianship. Suddenly 25 feels way too soon. Not because he won’t be ready, I will be sure he is but because… I won’t be.

Being Parker’s mom is being his caretaker. It defines me. And I’m good with that. But really, it’s all I know. I don’t know how to function without helping him through each day. I’m lost when he’s with his dad or at camp and I am not tying shoes, tucking him in at the end of the day or reminding him to have patience because I cannot jump at every command… and despite his protest he can do some things himself!

Making that leap at won’t only change Parker’s life, it will change mine. In a major way. And part of me does not want that at all. Not even a little.

The thought of him living away from me with someone else caring for him, tying his shoes, telling him “goodnight” is a bit – ok, a lot – heartbreaking to me.

And I know what some of you are thinking, “Why can’t he just stay with you and then go live with Allison after you are gone or  too old to care for him?” And, in all fairness, Allison will tell you that is her plan. He also is blessed with 2 pretty awesome step-sisters now who may also feel the same way and want him to reside with them. But, the reality is, it’s not fair and it is not an expectation that I (or Scott and Jen) have for them.  Parker is not Allison’s responsibility. She will have her own life too. While I fully expect her to always include her brother in many things, I also expect her to live her life to the fullest. The same for his step-sisters. I’m not completely sure it would be fair to Parker either to have to live with his sisters, even knowing how very much they love him.

If, many years down the road, they decide this is what they want – they will have our support. But, it’s not something we are planning or expecting.

Lately, I’ve been struggling with that magic number we picked (and I have to say it’s “by” 25 – if something perfect comes available before age 25 and he’s ready – in no way would I hold him back. I would cry a lot but I would do what is right for him because that is the most important.) subconsciously talking myself out of it a little more each day.

Then, unexpectedly, I was reminded why it’s so important to me to have a magic number.

The film Mimi and Dona crossed my newsfeed. It’s a documentary you can watch for free until September 19^th through this link – I highly encourage you to watch it, with Kleenex in hand.

Mimi was 92 when she accepted she could no longer care for her daughter, Dona (in her 60’s), and placed her in a residential facility at the urging/demands of her family. It was the hardest thing she ever did. Not only did she say it but you could see it in her face and hear it in her voice. No part of her wanted to do this and she very desperately wanted to bring her home.

“You don’t know what it’s like to say goodbye to someone” she said to her family. And she was right. Those words were so true, so powerful and so very much from the heart. No matter how much you love your sibling or relative with a disability and can see from the outside what appears to be the “right” decision for them, you don’t know and understand the pieces that hold our lives together. It’s always easier from the outside.

What I saw was likely different than what her family who was urging her to leave her daughter at this facility saw and heard. “You don’t know what it’s like to say goodbye to someone.” Was much bigger than saying “goodbye, I will see you soon.” Not only was Mimi having to say “goodbye” to her daughter but to the only life she had known for all of Dona’s life too.

She was leaving a huge piece of her heart behind. The guilt, the worry, the anxiety, the helplessness all stayed with her while her heart and her love slowly faded away in the distance. She also knew that her relationship with Dona would never be the same.

This was more than just saying “goodbye” until next time. It was saying “goodbye” to everything she had fought for and known for over 60 years.

It meant starting over, for both of them, with broken hearts.

While I don’t want to give away the entire movie, I do want to point out that the decision did not end well. And while it was never said, I can tell you as a mom who is also a caretaker, that a part of Mimi – no matter how good of a person she was – never forgave those who forced that decision on her for Dona to move. It didn’t have to be said. It’s simply known. I would never be able to forgive anyone who forced that decision on me that led to that outcome. (Yes, an outcome that may have happened regardless but there is no way to know). Maybe Mimi is significantly better than me, forgiveness isn’t my strong suit. But I know it’s a heart ache and anger I would take to the grave.

*Side note – I saw so much of me in Mimi and so much that I strive to be. She was so filled with love and fought so hard for her child… I have so much admiration for the incredibly woman she clearly was.

The movie, again, like the article I read so many years ago took all of the air from my lungs. It left me gasping, unable to breathe.

It made me realize that I have a magic number for a reason. Because if I don’t 25 will become 35. 35 will become 45. 45 will become 55… and eventually, we will be in the spot Mimi and Dona were in, where the family I mentioned early were in – where Parker and I would live in a bubble unable to survive without the other.

And that is not fair to him. And some would argue to me.

I know that many of my friends just sent their kids off to college or off to the military. And while I cannot imagine how that feels, I know that their children can tell them absolutely everything. Whereas my son, cannot.

While it’s a comparison many like to make, the reality is it’s different. I won’t be sending him off to college and welcoming him back when he’s on break… or can’t find a job and living in my basement until he’s 35….  I’ll be sending him off to find people to try to love and care for him as much as I do. To protect him. To keep him safe. To love him unconditionally. To show him the world and also protect him from it.

I’ll be looking for the impossible but I am determined to find it. Or create it.

I won’t know if he’s had a rough night. I won’t know if he’s scared or had a bad day. I won’t know if someone is abusing him or taking advantage of him. I won’t be there to protect him for the ugly in this world.

I won’t be able to fully explain to him why he can’t live with me forever like he wants to right now.

I’ll have to trust strangers. I’ll have to set up systems to check in. I’ll have to be vigilant and do all I can to help him understand how to protect himself or report others. 

I’ll have to walk away when he’s crying for me to stay. I’ll have to hear his anger when I don’t go pick him up on a whim and bring him home. I’ll have to re-learn how to live without being his caretaker full time.

I’ll have to learn to trust which is, very simply, something I do not do at all. Ever.

This will be the hardest part about raising Parker. Letting him go. Letting him move on with his life without me as his full-time caretaker. And then trying to find out who I am without him always by my side.

While it will be the hardest part, it’s also one of the most important parts. Parker loves being with friends. He loves the independence he is gaining. He will thrive. He will do exactly what I need him to do… he will prove to me that he can live life successfully without me by his side.

He will show me happiness. He will show me pride. He will show me new friends. He will show me new experiences. He will show me that all of the sleepless nights, all of the IEP’s, all of the pushing of boundaries, all of the research I did had a purpose.

And while it will be possibly my most challenging task ever, I will figure out who I am beyond his caretaker as well. Who knows what’s waiting ahead for us both but I know we will find out before I’m ready.

My heart broke for the family I first mentioned and for Mimi. I cannot imagine the pain. Please understand, I do not judge them. I believe they did what was right for them at that time in their lives. I believe the felt this was the very best decision for their child/ren and family. And, maybe it was. I simply respect and love them for being such incredible parents.

I also appreciate their stories being shared, reminding me that this path isn’t the right one for us. I cannot keep him with me until I am no longer able simply because I am not ready to let go. If I was his entire life and suddenly gone, all of the work and progress we’ve made would have been for nothing. It would turn his world upside down in a way no one would be able to fix. I cannot do that to him and I won’t.

So, our plan remains solid. It’s one that will benefit Parker the most. And in a few years when we reach that point, I know he will absolutely shine and build bonds that will carry him through the years that extend beyond me.

I know this is a challenging subject but one I hope you take time to think through. This is just our plan. It what we believe is most appropriate for Parker. It does not mean it is the right plan for everyone (or anyone) else. My request is that you think through the future and what will happen to your adult child if you are suddenly no longer here and if there is a way to prepare them for success while you still are.

This is the hardest part about raising a child with a disability. The future. The decisions are not easy. Learning to live again without caring for someone who carries your heart 24/7 will not be easy either. No one understands how hard it is to say “goodbye” yet at the same time, some of us have a pretty good idea.

Love and hugs my friends. This journey is not always the easiest but it’s also not one we travel alone.