This Side of the Grass

 Photo credit: the fabulous Deb Cram

There have been several articles written on what we, the parents of kids with special needs, wish you, the others, knew about our lives. These two articles cover a lot of ground that I firmly agree with. I want to add my own two cents, and I’m only speaking for myself.

Please don’t say, “I don’t know how you do it” or “I just couldn’t do what you do.”  Here’s the truth, you would rise to the occasion just like I did. And here’s the other truth, sometimes I fail miserably. This sentiment isolates me and makes me feel so un-relatable or set apart from you, who I need and want to be friends with. Also, put me on a pedestal like this and I have no where to go but down.

Everything in my life takes more time.  Really. Just everything. After you’ve passed the toddler stage of parenting, it’s just a lot of verbal prompts to get your kids out the door. “5 more minutes until we leave. Please put your shoes and coat on.” I’m still doing all of the physical care for my child; dressing, feeding, toileting. Not to mention the extra time to get him into his wheelchair and buckle it down in the van. Not only does it take more time, but we can’t actually go everywhere; that’s the thing about accessibility. A walk in the woods, a day at the beach, even to a museum; it all takes some research and sometimes a herculean effort and often it’s just less stressful to stay home.

My marriage is stronger than you think. There’s debate about the statistics of the rate of divorce among people raising kids with disabilities. Obviously it’s quite taxing on our marriages. Garreth and I share a huge amount of responsibility; we have to communicate about hard things; we have a shared appreciation that only the other understands; we make ourselves vulnerable with our fears. These are all building blocks for a great marriage. The thing is, Garreth and I were thrown into a sink or swim situation. Sometimes we barely stay afloat, but most of the time we’re kicking Olympic synchronized swimmer butt.

I’m mostly over it, and sometimes I’m not. Having Aidan was a crisis when he was born. There were so many unknowns and so much medical attention. Now it’s just life. Yes, I get exhausted and overwhelmed but I also know how to pace myself… that is…until the next thing; the next thing like choosing a wheelchair; or getting a diagnosis of Epilepsy; or working on inclusion with the schools.

I constantly teeter on the edge of gratitude and insanity. It’s very much about perspective, isn’t it? I can definitely get stressed about Aidan’s seizures, appropriately so. I can also bust out my Count voice (1 seizure ah,ha,ha; remember from Sesame Street?) when counting Aidan’s seizures. I can wax eloquent about how his wheelchair has brought him independence and changed our lives, or I can get totally frustrated that he can’t feed himself. It’s all a fine line.

I won’t talk to you in an honest way about the future. Frankly, it scares the hell out of me and you wouldn’t know what to say. It’s not just the exhausted feeling I get at the thought of taking care of Aidan until the day I die, it’s the fear of him dying first.

You may not in the truest way get my life, but I love that you try and that you’re willing to join me in it.

Shared at Joy in the Journey

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30 thoughts on “This Side of the Grass

  1. So firstly…those eyes! What a beautiful soulful picture of your little man!

    Secondly…I continue to fall a little more in love with you with each post. 😉

    …d

  2. I love this so much (as I always do) and although I am not coming from the parent perspective, it is so relatable. I have often said to “how do you do it” hahah. you know what? I have no clue, either! And in terms of accessibility, I have never been more aware of it like I am now that I am with Owen, there are some days where we have the time and embrace it as an adventure (“Where is the elevator to Caesar’s Palace again? We’re going around in circles aren’t we?”) and others where I just get really sad and angry we are still where we are as a society. What is so wrong with universal design people!?!?! And of course, can you really ever be “over it?” I mean we live our lives the best we can and go above and beyond, but as I tell all my young people all over the country, it’s ok to have those “why me days,” But then we remember and keep moving forward. ❤ Thanks for being my blogspiration. I still need to post my 11 questions!

  3. Number One: Looking into Aidan’s eyes is like standing next to the ocean!
    Number Two: You have an amazing way of describing your journey! It is neither sugar-coated, nor all about the “deficits”. I love reading your blog!
    Do you know, many years ago, a therapist (A good one!) said to me, “I have never said this to a client but I am saying it to you. You have permission to feel sorry for yourself every now and then for a few minutes. Because I know you will get it done and move on.” Best advice I have ever gotten! Don’t really need it anymore but at the time it was just what I needed!
    I also knew a Mom who had two kids with special needs whose therapist (A bad one) told her, “You have to be exaggerating! No one has this many problems!” She laughed her head off because she was sugar-coating it! 😀
    Number Three: I am so glad I have you as a Mentor! Thank you for everything, including this blog!! ❤

    • Dipping my toes into the pity pool – that’s what I call it. I dip and get out. I’m grateful to the fabulous moms like you who have paved the way, and are still paving it. Just check out your amazing daughters – you did that!

  4. You my friend, are amazing. Not in a “pedestal kind of way” amazing, in an “I am so blessed to know you and your honest, hilarious self kind of way” amazing. I can only imagine the stress that comes with your life and I love that you handle it all so gracefully, that is until you don’t and then I love you even more for how real you are. love love love. that is all. 🙂

  5. Thank you for your honesty, for sharing your writing gift, and for coming into our lives as inspiring and understanding comrades last year.

  6. Hi, found my way here via Life: Unmasked at Joy in the Journey.
    What a meaningful and helpful post about a subject not many are willing to address. I like your honesty about the paradoxes you live with. It doesn’t change your situation, but it might make others more sensitive to some things in your world.
    My younger sister was born with Cerebral Palsy that affected her entire body fairly severely… and my family is still learning how to be honest about those paradoxes.

  7. Here from the linkup at Allume. This post is beautiful. Thank you so much for sharing these thoughts from one mother to another, when the “another” is not a mommy to special needs. Speaking from my side, I DO want to know these sorts of things, to know what to say and what not to say, to know how to help and how not to help. Thank you so much for speaking up and telling me.

  8. I’ve gotten the “I couldn’t do it, how do you, you made these differences,” regarding both my son with autism and my daughter with ADHD and a mood disorder. A: You never know till you have to then you learn to pray, ask others to pray, do research, work as a part of a team to keep what is so essential for autism, get a good therapist for everyone in the family and the list goes on. I haven’t written a lot about autism because that wasn’t the force behind the blog. But if you’d like to explore the older posts for those that do have that content, I’d be honored. I was blessed my epilepsy was so easily controlled, I wish Aiden were as lucky. I wish his developmental delays weren’t worse than my son’s. But I’m thankful (for his sake and yours) that you and Garreth have such a strong marriage partnership. We’ve been married 36 years, yesterday in fact. Time, travel limitations I can fully relate to. Though the wheelchair is mine, it still takes time and accessibility is often a joke. I hope you read my post of how I got my van, it’s so uplifting to know there are people like that in the world. No one in our family is healthy, so it’s tough getting things done, and they often don’t get done. But it’s not the end of the world. We learn, life goes on .I’m so glad I found you and your blog.

  9. Wow – there’s a lot here. Congrats on your anniversary. Always good for people to hear. Clearly your great attitude and your faith have gotten you through many challenges. Would you mind sending me the link to your van story? i couldn’t find it and I sorta collect those stories in my head. Thanks

  10. I am right there with you! My daughter Paige will be 24 in September. It has been a long road and I’m still walking it. Yes, I am frightened that I will have to take care of her until the day I die and I am frightened that she will die before me. But, no matter God’s plan I’m all in. I have a wonderful support system or I wouldn’t be able to do half the stuff I get to do. Awesome post! Thanks for being a voice for all of us! 🙂

  11. This post was so helpful for me in relating to my friends who are on this path. The reason we say, “I don’t know how you do it,” is because some days I feel like I’m barely handling the little that I do have to deal with! But there is an old proverb (probably Irish. Aren’t all the good ones?) that says, “God doesn’t make the burden to fit the back. He makes the back to fit the burden.” So true. You’re blog has helped me so much!

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  14. Beautiful, and honest, and true. I found you via Five Kids is a Lot of Kids, and I plan to stick around. Your perspective is perfect.

    I hear, often, “I don’t know how you do it,” referring to both my son’s disability and my own. What I don’t think people understand is that despite disability–or maybe because of it–our family is tied together in a bond unlike many others. It sounds like you understand! It’s a whole different world on this side of the grass. Sometimes it’s greener over HERE!

    But “I don’t know how you do it?” I think it’s kind of a cop-out way of saying, “I’m so sorry you have to live this way.” What I wish people knew is that I am NOT sorry for the way our lives have worked themselves out. We have a story. We have a purpose. We have life and love and meaning.

    (Some days, I don’t know how I do it. But somehow, by the grace of God, I do. I guess that’s how we do it…we just DO!)

    • Thank-you Elizabeth and yes, we DO all have a story, a big mixed up messy wonderful one. And you’re right, quite simply, we just do it (sheer brilliance Nike,really). Thanks for joining us.

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  17. This is great, really great. It has helped me to see a bit more into your world and the world of others I know. Thanks, once again. The first point struck a chord with me. Your writing had always been brill, but its taken a few leaps ahead recently. Keep at it heather 🙂

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