What It’s Like to Feel Like You’re Never Doing Enough for Your Special Needs Child

I wish I could say that the feeling of never doing enough for my child, and therefore never being enough as a parent, goes away, but for me, it hasn’t. It lessens on Madilyn’s “good” days, but even then, it lingers in the shadows, never allowing me to let my guard down completely. There are always a million things to do. I guess everyone probably has a to-do list a mile long with things that take a lot of time before they get marked off.

But this is a different list. Instead of ‘pickup groceries’ and ‘make a hair appointment’, it’s everything from “modify bathroom to help Madilyn be more independent” (with six subtasks and counting) to “research neurologists,” “braille new books,” and “review IEP progress notes.”

The list never ends. And there are so many things that don’t ever make it on the list that may or may not be getting done. Plus, the first list, the general list of groceries, haircuts, bills to pay, etc. doesn’t magically disappear either. The “Parenting Madilyn List” is in addition to all of that other stuff. And her list ranks ahead of many of the now much less important ‘minor tasks’ as well. (Really, Madilyn’s list ranks ahead of all of them besides the basic needs of life – food, shelter, and a source for the money needed to provide these necessities.)

The most frustrating times are when a task gets added because someone else isn’t doing their job, like when the school or doctor’s office drops the ball.

The hardest times are when I can’t find a solution to her problem. These are the ones that can eventually bring me down. The ongoing hardships that recur every single day because I don’t understand enough to help or because we don’t have the money to pay for the solution we finally find.

Maybe there just isn’t always a viable solution. I don’t settle for that idea usually, but perhaps I should, even if it’s to come back around to the problem later. It’s hard to learn to deal with the concept that there aren’t fixes for these things. Then, sometimes the answers we do find come with stipulations and other hardships connected to them – like leaving our home and family in Arkansas to move halfway across the country to a place where we didn’t know anyone and could barely afford to live (and we didn’t live nearly as ‘comfortable’ either). Now, like many parents of kids with disabilities, we’re in debt because I couldn’t work and give Madilyn the care she required at the same time. And that’s difficult to swallow to since I worked extremely long and hard to earn my Electrical Engineering degree. (Not to mention the added expense of a monthly student loan bill.)

I try to remember that I’m doing the best I can, but that rarely feels like enough. Telling yourself “I am enough” is hard to believe when you aren’t providing the things your child needs to lead the life that is her full potential.

Have you dealt with similar feelings of not being enough or the heartache of not being able to find the right solutions to your child’s needs? Share in the comments below or email me. I’d love to connect.

4 Comments

  1. I have felt, many times, that I am not doing enough for my son with vision loss. It breaks my heart to think that way, or to think that I might not be enough either.
    I can also relate to your struggles with deciding to stay home, due to the needs your child has. I have a masters degree and am barely using it (I work per diem hours, which happens once per month, if that) and it weighs on me.
    My point is that I can relate. It is hard, what we are doing, but it is worth the struggle and the challenges we are facing. Some days are harder than others, admittedly, but it’s comforting to know that I am not alone as a parent to a child with vision loss.
    Thank you, so much, for sharing your thoughts and feelings. It is incredibly helpful (for me, as a parent in a similar boat) and I hope it is helpful for you as well…to write about it.

    • Thank you for sharing, Jamie. It is helpful for me to write. Writing has been a sort of therapy for me for most my life. It is also really helpful to have others comment, like yourself, to help me remember that I’m not alone either. Thank you.

  2. Hillary
    Thank you for writing and sharing with us! You love your little girl with all your heart! Much of what you have shared is very familiar.
    I am consumed with all things Mary Rose, and love her with all my heart! There is always something that I want to teach her and to confess it is often something you have posted and already taught Madilyn. Girl you are my inspiration and 100% I believe your Madilyn is as smart as she is because her mom Is selfless and gives more than any other parent I have ever met! Sleep tight each night knowing you are guided by the Holy Spirit and Madilyn’s care is in good hands……….yours! Love you!

  3. The school system says it won’t have the funds for two years to help Lucas with his Braille. So we purchased a smart Brailler for him. There is so much financial hardship that the state won’t help with. Our Lucas is just Blind so he doesn’t qualify because he isn’t sick enough. So you just go on and let God guide you through your days and know that it will get better because you WILL make it work. God Bless and stay Strong. You all got this.

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