Some days raising a child with significant special needs means witnessing miracles. Simple things that most parents would take for granted become landmarks. If Lizzy answers me when I ask her what dress she would like to wear, or spontaneously lets me know she likes the strawberry ice cream she is eating, that’s a big deal.
Some days it feels as if my heart is being torn out of me and all I can do is watch while she struggles to tell me what is bothering her. When she hides in a closet or under her bed because something is scaring her, but she doesn’t know what it is or even how to let me in her very complicated mind, that’s when I feel most lost with her.
Some days I watch my kids at the table, laughing and enjoying each other and I know in my soul that there was a higher power at work that made us a family. Each of our personalities is the perfect match for one another.
Some days I doubt the existence of that same higher power, and I’m sad that my once-unshaken faith has small cracks in it. I worry about what the future will hold. Will the boys resent the time and energy their sister requried? What will they have to deal with when my husband and I are no longer here? Who will take care of Lizzy when we can’t do it ourselves?
Some days I am so grateful that my husband and I have not only survived but have thrived raising a child with significant needs. Scary phone calls and tense doctor appointments are made better because we are a team, and can help each other deal with our unique family. Laughter is a huge part of everyday life whether things are going great or not.
Some days I miss the “old days” when all we had to worry about was ourselves. Our biggest decision was what movie to see or restaurant to have dinner at.
Some days I am glad that I have found a platform and can share the struggles that being a special needs family can bring.
Some days I wish I had nothing to share on the topic.
Life is funny that way. One minute I can be so grateful for everything I have, and the next I can feel like the world is toppling on my head.
I thought of this today when I was sitting at the kitchen table with my youngest son, Peter. He was eating soup, and we were chatting about earth-shattering topics like why there are no beans in the cajun soup, and how much we both loved cherries.
To be honest, at first I resented the time it was taking to sit with him. I was busy and had 1 million things on my to-do list. I was tired and cranky and having one of my harder “some days.”
But as we were at the table I was forced to stop rushing for a moment. I did my best to take in the sound of his 10-year-old voice, and the way he looked up at me listening to my every word. He wanted my company, and I was so glad I could give it to him.
Lizzy came in from outside and gave me a big hug. And pretty soon my teenager followed behind her with a question about a movie he was watching. All of sudden my harried stressful day stopped and I was enjoying my family.
I realized in that moment that it is these simple daily interactions that make up my life and when weaved together, they become the cloth I wrap myself in for all of my “some days.”
Lisa Weinstein says
Kathy – it is sometimes so hard to just stop the million things we have to do and just be with our kids, just listen to them..I am so glad you enjoyed your time with Peter! I have 2 very dear friends who have adult special needs siblings. There is no question in their minds that they will be there for them when their parents are no longer around. It’s as sure as the sky is blue – there is no resentment – they want to be there for their siblings! It’s that strong bond we call family!
Myke Todd says
Again, I am in awe of your resolve, at how you react subjectively, and find ways later to put into proper context. And always, while reading your stories, I am found h̶o̶p̶i̶n̶g̶ ̶f̶o̶r̶ anticipating a happy ending. Those are always worth waiting for.
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Janine Huldie says
Kathy, I think this is one of my most favorite piece of writing so far by you, because it is just so real and so from the heart, too. You are right about the moments though and it is times like these that do very much stop me in my tracks and most certainly tear at my heartstrings so very much. Hugs, my sweet friend xoxo!!
You are such a beautiful person Kathy. I’m in awe of the mother you are. You share your inner thoughts with all of us, your challenges, the good, the heartbreak and the scary. You are my hero my dear, wonderful friend.
Sending you hugs and lots of love!
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Alisa / Icescreammama says
This is beautiful and so perfectly captures the shifts we feel everyday. Some days are a mix of being so grateful and so frustrated, and generally they are most days. 😉 you’re a good mama. Xo
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Andrea Brovetto says
Great post Kathy very true and raw. Love you. Mom
Carol Cassara says
What a beautiful and moving post. Life is like that, isn’t it? All jumbled emotions and thoughts. Blessings to you, Kathy.
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Rena McDaniel says
I was really touched by this Kathy. I can’t imagine how hard your life is sometimes, but then you will share something like this and I think how very lucky you really are. My kids are all grown now and we are starting down this unknown road with our twins grandchildren and reading your posts always make me worry less about the future and concentrate more on just enjoying and loving them. Thank you for that.
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Judy Freedman says
Wonderful and touching post. It’s good to take time to stop, breathe and be and enjoy the life you live.
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This is just perfect, Kathy. In the same way that our imperfect lives bless us so perfectly in their own strange ways. Thank you for inspiring me today!
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It’s hard sometimes when you get wrapped up in what’s going on inside – and you fail to notice what’s happening around you. I think if we become more mindful of it we can’t help but enjoy the “outside” a but more.
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I like this because it is real and it is easy to relate to. There are moments where I feel like the best father ever and I think about how I have parenting/life nailed down.
And then something happens and I wonder how I could be such an idiot and so blind.
The majority of life are the moments in between those two, where they aren’t based upon extremes but…
Linda Roy says
It’s so important to take a moment to stop and reflect on life, to look at what’s around us, to really see those in our lives. I don’t do it enough. Thank you for the reminder Kathy. xo
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Ron Ankney says
This is a Mother baring her Heart for us and our children!
A beautiful testimony to Motherhood.
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Becky Holland says
What a beautiful post! thank you for sharing with such honesty.
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