In Search of a Comfortable Barcalounger

I have been putting this post off for weeks. I’ve told myself that I have writer’s block, that I’m too busy, that life, you guys.

Really, I am just hiding out. From myself and from you and from this blinking cursor who knows that I won’t write another thing until and unless this comes first.

Deep breath.

Today, I am meeting an estates and trusts lawyer. In 33 minutes, I will put on some nicer shoes, hopefully remember some earrings, and get in my car to meet my parents at the office of their lawyer and discuss my son’s future.

Today, a man I have never met will ask me, “Do you think your son will be able to manage his assets when he reaches age 18?”

I will look at this man, a stranger until today, and say, “No. I don’t think so.”

I wonder if this man will know that I feel like I’ve stabbed myself in the heart with those out-loud words.

I can already hear my inbox dinging with messages. “No limits!” and “Don’t give up!” and “He’s just differently-abled!” I hear you, and I want you to know that it makes this worse. This has not been a quick or easy realization. There is a time to fight and a time to advocate, and there is a time to face every possible reality and plan for it. Today, I am planning for my son’s possible reality.

Here’s the truth. Yes, we have lived in special needs world for several years, but I honest-to-goodness thought it was temporary. I really did. I thought with enough work, enough therapy, enough motivation, in time, I could get Jax to that finish line that said “typical-ish.” I thought he might hover at that line, he might take a few steps forward, one step back, but that line was the goal, the only goal. I did not allow myself to consider the chance that he wouldn’t reach it.

After watching my son this year, and watching the gap between he and his peers grow, watching his struggles in school, watching his comfort zone shrink, I think we might be here to stay in special needs world. I think I better get rid of this movable camping chair and buy myself a Barcalounger.

I’m going to go tell a stranger to set up a trust for my son because he might never make it on his own. I will designate someone to manage the trust, and I will work my ass off to fund it. I will come home and I will hug my son fiercely and tightly and tell him that he is my favorite thing. I will send him off with the sitter so I can have an hour to myself.

Then I will be honest with myself, I will think about the magnitude of this, and I will let myself be absolutely terrified.

Sincerely,
Becca

Rebecca Masterson is a writer, speaker, and an advocate for children. For more from Rebecca, follow her on Instagram.

20 Comments

  1. xsoulxonfirex

    Your candid words on your struggle is inspiring. I have no idea how you’re feeling but I hope to hell it gets better soon. All the best xx Jackie

    Reply
  2. xsoulxonfirex

    Your candid words on your struggle is inspiring. I have no idea how you’re feeling but I hope to hell it gets better soon. All the best xx Jackie

    Reply
  3. Nikki

    That is such a hard call to make. While I agree with everyone on the idea of no limits, I also know there is a difference between limits and being prepared. I spend a huge chunk of my time working with my son toward independence and being able to do self-care stuff, teaching him what he needs to know to be on his own. And I spend another chunk of time planning and preparing for what we do if that doesn’t end up working out. Because as much as you want to just keep hoping, there’s also the responsibility as a parent to make sure they are safe and have their needs met. Today you’re brave, even while you’re absolutely terrified.

    Reply
  4. Nikki

    That is such a hard call to make. While I agree with everyone on the idea of no limits, I also know there is a difference between limits and being prepared. I spend a huge chunk of my time working with my son toward independence and being able to do self-care stuff, teaching him what he needs to know to be on his own. And I spend another chunk of time planning and preparing for what we do if that doesn’t end up working out. Because as much as you want to just keep hoping, there’s also the responsibility as a parent to make sure they are safe and have their needs met. Today you’re brave, even while you’re absolutely terrified.

    Reply
  5. rgemom

    Hugs. For me, the hardest part of my son’s diagnosis is knowing it doesn’t end. Thank you for sharing this part of your story.

    Reply
  6. rgemom

    Hugs. For me, the hardest part of my son’s diagnosis is knowing it doesn’t end. Thank you for sharing this part of your story.

    Reply
  7. Donna Miglino

    You are much braver than I. I’m just gonna live forever.

    Reply
  8. Donna Miglino

    You are much braver than I. I’m just gonna live forever.

    Reply
  9. Inger Hebert

    I think you are An amazing mom I think planning for the worst is not wrong or giving up, it’s just being a responsible and good parent. You are his warrior his protector and protecting his future no matter what his future holds is the most important thing you can do for him. Don’t look at this as giving up or giving in just look at it as peace of mind. He is an amazing boy, maybe not on the soccer field like you dreamed of but he is an individual that is being formed and molded by your loving hands and hard work. He is going to be great just because you have devoted your life to him and have made a difference in his life and will continue to. So maybe this wasn’t what you planned or dreamed of but also look at it this way you have and will make dramatic changes in what his life may have been. You matter, he matters and his awesomeness may never be on the range of what people say is “normal” but he will still be awesome because he has you and you have made important and difficult decisions for him. Love and trust in what you do for him and take peace in knowing that no matter what his abilities are he is going to be taken care of.

    Reply
  10. Inger Hebert

    I think you are An amazing mom I think planning for the worst is not wrong or giving up, it’s just being a responsible and good parent. You are his warrior his protector and protecting his future no matter what his future holds is the most important thing you can do for him. Don’t look at this as giving up or giving in just look at it as peace of mind. He is an amazing boy, maybe not on the soccer field like you dreamed of but he is an individual that is being formed and molded by your loving hands and hard work. He is going to be great just because you have devoted your life to him and have made a difference in his life and will continue to. So maybe this wasn’t what you planned or dreamed of but also look at it this way you have and will make dramatic changes in what his life may have been. You matter, he matters and his awesomeness may never be on the range of what people say is “normal” but he will still be awesome because he has you and you have made important and difficult decisions for him. Love and trust in what you do for him and take peace in knowing that no matter what his abilities are he is going to be taken care of.

    Reply
  11. NickyB.

    This is something that I must do. You were strong enough to actually take care of this. I wanna be like you when I grow up.

    Reply
  12. NickyB.

    This is something that I must do. You were strong enough to actually take care of this. I wanna be like you when I grow up.

    Reply
  13. btg5885

    Becca, you are the best of moms. You are looking after the best of interests of your son. Love is more than just hugging, but you got the hugging part right too. You are a credit to him. BTG

    Reply
  14. btg5885

    Becca, you are the best of moms. You are looking after the best of interests of your son. Love is more than just hugging, but you got the hugging part right too. You are a credit to him. BTG

    Reply
  15. awmaynard802

    I’m a “special needs” myself, i’ve been in n’ out of places my parents thought would help. They all did, to a point. I’m still in what i would call a “recovery house” It’s been in places like this for 27 years, give or take. I can understand partially because i had a gran mal seizure and your son is showing some signs of that.

    Reply
  16. awmaynard802

    I’m a “special needs” myself, i’ve been in n’ out of places my parents thought would help. They all did, to a point. I’m still in what i would call a “recovery house” It’s been in places like this for 27 years, give or take. I can understand partially because i had a gran mal seizure and your son is showing some signs of that.

    Reply

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