I have a special needs child. There. I said it.
Before our accident, I didn’t know any other family with a special needs child. I was blissfully ignorant of this hidden world in which I now find myself.
The first secret is that there are a ton of special needs children! Just visit any reputable pediatric therapy center, and it will be PACKED. There are so many families struggling in this secret world. It makes me realize how miraculous a healthy child is!
The second secret is that even though our government goes to extremes to make our country accessible to the disabled (and I’m grateful), accessibility is still a huge challenge for our family. For example, a simple trip to the pool is difficult for us. In my limited experience, pools are sometimes not wheelchair friendly, so I have to carry Anne into the pool area. Doing regular life is difficult – especially running errands. Lifting Anne and her wheelchair in and out of the van is part of my normal life routine. But I’ve found that I only have the energy for one outing a day with Anne. So grocery shopping, back to school shopping and general “running around” has to be spaced out.
The third secret is that even though there are tons of special needs families, it is still incredibly isolating to have a special needs child. The world goes by at lightning speed and leaves us in the dust. In many ways, this is painful – and if I’m not careful, I can lean a little towards self-pity. Seeing pictures of families enjoying vacations to the beach or amusement parks twinges a little. Watching families bustle about without the physical limitations of a disabled child makes me long for an easier life. It’s times like this that I cling to the fourth secret of having a special needs child…
The fourth secret is the best. I am still surprised at how much joy Anne brings our family and others. The time I get to spend with Anne is beautifully rewarding. She’s a treasure, and everyone who spends time with her comes away better for it.
Recently, someone asked Eric to describe his relationship with his children. He said, “My oldest thrives academically so I share my love of technology with him. My youngest is gifted athletically, so I share my love of running with her. My middle daughter (Anne) struggles with most everything, yet she teaches me the most about life.” Anne is our glue. I can’t imagine life with her any other way.
6 thoughts on “A peek inside the secret life”
Beautiful post, Kathryn.
It’s a gut-wrenching, heart-rending, awe-filled world.
(I knew this thru my Foster son David and glimpse it today thru almost 15 years of H&H ministry and my host of Mommies.
Many allow the situation to become the solvent that destroys all……your words, your hearts……all bespeak His Love & Grace in the midst……and with Him, wonders never cease.
Loving you and lifting you up, and praising Him for all you each are (and are becoming), one breath, one errand, one day at a time.
Thank you for sharing bits of your world and heart here, that we might circle round you, bring you before Him……and also glimpse a bit of Heaven’s earthbound kisses (as one of my H&H Mom’s call the blessings and treasures tucked within the constant challenges).
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I just love reading Lu’s replies to your posts. They are always so heartfelt and uplifting. She must be an incredible woman! I’m not surprised you two are friends. Love you!
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I am so proud of you Kathryn.. I love you…………………….
I greatly appreciate you sharing your thoughts and feelings of being a special needs parent. I was extremely touched by Eric’s comments. I’m so glad that he looks at Anne as being the “glue” that holds the family together. That’s awesome! I’m sure neither of you can imagine life without her. In her own way, she bring joy and laughter to so many, as you said. That’s one great characteristic of a special needs child. They can be so innocently loving and not really expect much in return.
As you might remember, I taught special needs children for 30 years. It was a challenging job to say the least. I didn’t have to physically take them home with me, but they were always in my thoughts. It was truly a 24/7 job! They existed in every part of my life, but in a much different way than a parent’s. They were so much more to me than my students, though! I loved them all! They were so special, so I know a little bit about what you’re talking about!
There’s a reason why they are called “special” needs children! They are so very special!
I enjoy your blog so much. How can people without special needs children bless your family or better interact with you? I was struck by the “seeing pictures of families at the beach,” etc. I don’t have any special needs children right now.
Great question!(and thanks for the comment :) What helps the most requires the most time and energy and that is to actually come to my house and help either with Anne or preparing meals and/or other errands. But most people can’t do that – either because of proximity or because of the time sacrifice required. So another thing that anyone can do that really helps me is to just offer words of encouragement – either in person or in writing. I love it when others see improvements in Anne that I don’t see or when Anne encourages them. It’s so meaningful to hear that someone has prayed for our family. Words of encouragement go a long way to helping me endure. So thanks for asking – and know that your encouraging words were helpful to me :)