This didn’t start out as a special needs blog. In fact, I still don’t think of it that way, though lately it’s been a running theme. But a few years back, I decided to open up more about that aspect of our family’s life. I thought by sharing a bit more on the blog, I could convince people that “if I can do this, anyone can.” I wanted to help people see they could joyfully parent any child God had given them. Unfortunately, I think most people take away that we’re saints, or exceptional people doing the impossible, not that we’re an ordinary family who’ve adapted to our circumstances.
Someone recently said in front of me, regarding a pregnant friend, “So long as the baby’s healthy.” and I thought, have you learned nothing from my family’s example? I should’ve blurted out “And even if the baby isn’t “healthy”, it’s not the end of the world.” but I didn’t. In the same conversation, when referring to an elderly friend this person said, “She requires people to do everything for her. What kind of life is that?” And I thought, that’s the joy filled life my boys live every day. But for some reason, despite knowing my family intimately, this person still held onto the belief that relying on others to care for you is a lousy way to live. This same person always tells me they don’t know how I do everything I do, as if in admiration, but thus far all my example seems to have taught them is that I’m exceptional, not that disabled children and special needs families are as happy as any other, and that makes me sad.
I strongly believe in teaching by example. I try to avoid confrontation and arguments; hoping instead that my example as a Catholic special needs parent speaks for itself, and can inspire others to see the truth, but I see now that people aren’t getting the right message. The message isn’t that I’m a saint, the message is that we are all called to be joyfully obedient to God’s will in our lives, even when it’s scary, heartbreaking, uncomfortable and looks completely different from what we pictured our life to be. It means realizing that God calls us to do hard things that will require us to sacrifice and die a little to ourselves daily.
You could raise a special needs child just as well as me. You could live a happy life if tomorrow you wound up confined to a wheelchair or needed a round the clock caregiver. The life I’m living, and that of my children, isn’t exceptional because I’m somehow happily raising two disabled kids. It’s exceptional, or rare, simply because SMA only affects approximately 1 in 6,000 children. Raising a special needs child requires the same skills as raising non-disabled children: patience, hard work, sacrifice and love. If you say you couldn’t do what I do, than I have to question if you can properly raise any child, pet or possibly houseplant.
I love Fulton and Teddy no more or no less than my other children, and while I am forced to parent them differently, I am the same parent to them and their non-disabled siblings. I do special loving things for all my kids, and those gestures are no greater when I do them for Fulton or Teddy. If your child was disabled, you would take the same creative measures, and not because you wanted a pat on the back, but because it’s what you do for your child.
As much as people say I’m so special and great, they don’t want to be like me. When you say “You’re so amazing! I couldn’t do what you do!” I hear you putting me on a pedestal and, in some cases, trying to excuse your own decisions. Rather than be inspired by my family and think, ‘Maybe I can do that too.’ you excuse yourself as being too impatient, too busy, too selfish, ignoring that I’m a sinner same as you,
We can do hard things. We often stunt our own growth by trying to avoid anything uncertain or uncontrollable. With faith, we can step out of the box. We can take risks. Not skydiving, bungee cord jumping, adrenaline pumping risks that require a GoPro strapped to your chest, but the risks that arise when we admit we’re not in control and that’s okay. Life will be okay. Our family’s life will be okay. Even if it’s sometimes hard and messy, it will be okay, and more often than not, better than okay. It will be better than the safe, confined life you tried to constrain yourself to. It’s the fear of the uncertain that often limits us from experiencing greater love than we can imagine. I’m proof that we can’t conceive of all the ways we can be happy. There are millions of disabled people in this world who are proof that happiness doesn’t look how you think it should.
There is joy and freedom in trusting in God and allowing Him to improve you, and your family by your joyful surrender. I thought that’s the message I was sending with my example, but I see now that people are still so wrapped up in what this world presents as ‘the perfect life’ that the only way to comprehend my life is to view it, at best, as exceptional, and at worst as an aberration against nature.
Instead of praising my mothering because I don’t make special needs parenting look awful, consider instead paying a compliment to any other mother you know. Tell her how well-mannered her children were at a parish dinner, how kind you saw them be to smaller children. Tell the struggling new mom how you can see how hard she’s working despite the exhaustion. Compliment any mom who is doing the best at her vocation no matter what hand she’s been dealt. Single mom, mom of one, mom of many, adoptive mom; all mom’s enjoy praise for a job well done.
Remember my example and my sons smiling faces when you or a loved one is facing a difficult medical diagnosis. When circumstances seem insurmountable, and your world is rocked, then I hope my words can help and inspire you to find the courage and the hope you need to trust in God and not fall into despair. Thank me then because I helped you see your problems in a new light, or because sharing my family’s story helped reassure you that things would somehow turn out all right. That is why I write about SMA. If I can do this, anyone can.
This was just absolutely fantastic! Thank you so much for being so open and sharing your life with your readers!
I love love love this post. I am not a mom (I’m a disabled adult) but I’ve really enjoyed reading about your journey. God will take us places we never would have expected, and often, that’s absolutely wonderful. 🙂
1)Is this because I called you a saint the other day???
2)The most annoying part of anyone saying to you “I could never do what you do” is the fact that they think they’re giving you this huge compliment/pat on the back for being so strong and courageous, when really they’re saying it because they’re thinking “that sounds like it sucks and I wouldn’t want to do that in a million years. I’m so glad I’m not you.” Of course, people were saying it to me because I lived in an RV, not because I was raising two kids with SMA. But still – I GET YOU!
I have an autistic son. What I hear in addition to “that sounds like it sucks and I wouldn’t want to do that in a million years. I’m so glad I’m not you,” is “I see your child as a burden and a diagnosis, and not a person or a possible source of normal, everyday joy.” It reduces parents to Hallmark stock characters and children to pity-inducing props.
I also run across people who think any mention of my kid is an attempt to garner attention or sympathy, when no, I am just a mom, and I just want to talk about my kid sometimes, like any other parent would.
?? I am not sure that emoji will show up but it’s a round of applause. Growing up, our best family friends had one child with Down Syndrome. And specifically because of their example and the other families we met at gatherings, I knew I could do it too. At the time of my pregnancies we were atheist pro-choice. And no matter the health outcome, I knew I would be keeping my child, even if it meant being a single parent. Took 5 more years for me to become Catholic but I suppose it was inevitable when I saw the truth in my heart about life.
Yes. This. So much this!
Wow! So much good in this post! I think I should probably read it a few times so it all sinks in. Thanks for sharing your family with us.
Beautiful! Thank you for sharing this part of your life! I learn so much from what you share and always am encouraged and inspired for sure! Thank you for being open to sharing the beautiful grace and goodness He shares with you and your family!
35 years ago or 33 years ago, it was either pregnancy 2 or 3, someone said to me that it was nice that I was open to another baby, “just as long as it’s healthy, right?”. Well, I said to this person that even if it weren’t healthy, my husband and I would deal with whatever came our way. I have meditated on this so many times. I ended up with 4 extremely healthy babies with no long term problems, except being human, of course. Things aren’t easy all the time, even all these decades later. I am pro-life, though I know there are times when other folks make decisions based on being only pro his or her life, not the life of the child. I am not perfect, but I do see life from conception to natural death as the only way.
By the way, I am proud of the job you are doing as your family’s Momma.
Yes. So yes. I too am a special needs Catholic mom and needed your post today. Keep up the good work!
I I want to hug you, Kelly!! You have expressed, beautifully, what has been on my heart for a long time…from one Catholic, homeschooling, special needs mom to another – God Bless You!
THAT was beautiful.
Kelly, wonderfully said! I wish that I had handled myself with as much grace as you do. But I know in my heart that I did the best I was able to do.
It took many years before our son was finally diagnosed. Years of rages, thrown chairs, spitting, broken plates, and tears. (and yes, some of that was also my response to him, unfortunately) Years of Internet research, reading books, mood charts, journal writing.
Finally, a wise doctor diagnosed bipolar, Tourette’s syndrome, ADHD, OCD, PDD, and anxiety. Some answers, appropriate medications, finally sleeping through the night at age twelve. There were many really hard years with very little support; financial issues as he couldn’t tolerate generic meds; required supervision through age 15; and went to a much-needed special high school.
With an “invisible” disability comes little support for the family. Our son was so stressed from “keeping it together” in public that he would explode the minute he had privacy. No one really saw what was happening, or wanted to believe us when we would attempt to share a sliver of our life at home.
We have seen incredible growth recently as he turned 24 this summer. We owe that growth to Our Blessed Lady following a novena to Our Lady Undoer of Knots. She untied all the knots that were preventing him from living as fully as he was able. He is on limited meds; is the most stable he has ever been; is taking 2 classes per semester at community college; works two jobs; works out regularly and is very fit; does his own banking, but still needs help with bill-paying; learned how to drive; bought a car; manages his own doctor appointments; does his own grocery shopping; prepares his own meals; and does his laundry.
Really, this growth happened within one year! Truly a miracle!
And yes, I am ‘not an exceptional mother’ like you. I am just a regular old mom (emphasis on old!) who wants the best for her children.
Thank you for this post! I frequently tell moms of special needs kids that I am in awe of their parenting and the wisdom they have to share. May have commented similarly on this blog! Is this ok? I want to pay them a compliment and show that I recognize it’s hard (not impossible). I do want to say what is appropriate to *these* moms, not just use the compliment on another person, so let me know… Thank you! We also cringe at the “healthy baby” comment in our family…
I love that you wrote this, and so well. I’ve been pondering this lately – how we are so quick to exclaim, “I don’t know how you do it!” (Different circumstances; I don’t parent a special needs child; but the idea of praising one “rising to the occasion”.) I frequently find myself telling myself, “I can’t.” After realizing that I wasn’t being fair (because I tell my kids, “We don’t say, I can’t.”) I realized that saying, “I can’t” is ok. It’s signalling our weakness. And God’s strength. We don’t usually choose hardship in our lives willingly. But we get it. And we cry. And we DO, by putting one step in front of the other and by choosing love and self-sacrifice when faced with that which we wouldn’t have chosen. I’m amazed at how all the things that I did not choose in my life (and which I still couldn’t bring myself to choose if I had it all to do over! because I am not that strong!) have reaped grace to live out my vocation. God is good.
This is such a wonderful post, one I’ll return to read again and again. Thank you for sharing this with us … as a special needs parent, I am blessed by your perspective. ?
I am a parent of a special needs child, and I really needed to hear this too. To remember, even in the midst of the bad days, that “Life will be okay. Our family’s life will be okay. Even if it’s sometimes hard and messy, it will be okay, and more often than not, better than okay.” (The flip side of that is that some days are not okay, and this too shall pass. Just like in any other family.) We are all marching in the light of God toward the same goal.
It’s about choosing love and sacrifice, but also vulnerability. The amazing lesson for me this summer has been that grace only comes–and ALWAYS comes–when you ask for it, and sometimes that means swallowing pride and asking the people around me for help so they can be instruments of that grace. And I think that’s another way of helping people see that special needs parents are neither exceptional nor “doing it all” themselves. It *only* works because we are uniting ourselves to the body of Christ, on earth and in heaven.
I love you, Kelly.
I think the response you’re talking about has less to do with the good example you are giving, and more to do with the person making the observation. I don’t have any special needs children, but I do have 9 children, and I’ve been on the receiving end of that backwards “compliment” often. It always seems to me to spring from a combined sense of guilt (“maybe I should be willing to accept such a challenge?”) and pride (“I would never put myself in that situation!”). I never quite know what to say or do in response, beyond a strained smile. How can you explain the complexities of sacrifice and blessing of motherhood in 200 words or less? You’ve done a fantastic job here, though. Maybe I should print up copies of this and hand them out as needed. 😉
“We can do hard things. ”
“Even if it’s sometimes hard and messy, it will be okay, and more often than not, better than okay.”
I’ve read these quotes several times, just allowing them to sink in. Thanks for sharing.
I think when we see people doing anything we perceive as difficult, we tend to categorize them as exceptional because we don’t want to believe that it could be us.
When my oldest was 2, I lost her in the mall. I panicked because she was not a runner and always clung to me in public. When I looked and looked and she was GONE, I was afraid I would never see her again. (This isn’t normally like me, my 4-year-old wanders off all the time and we never panic!) This was different. Anyway, as I was looking for her and feeling my fear rise I was thinking that there was no way this could happen to me. People who lost children for good had to know it was coming. They had to! It was a survival mechanism for me to believe that there was something different about parents of the kids on milk cartons, that I would never be them because we were fundamentally different.
But there’s not, and everybody sort of has to have that realization for themselves. Maybe your post will help someone to have it. For me, it was when I ended up with an emergency C-section and a baby in the NICU. These things happen to you, me, anybody. And when they happen to you, you deal with it because you have to. You adapt. I love this post.
This is good and challenging. It’s challenging, because, to be honest, I am afraid of hard things. The really hard things. Sick kids, the lack of control that comes from raising children who one day might be taken from us too soon, the uncertainty of life… I’m afraid of those things. I think that’s why I look at people who face them with a bit of awe.
Do I know I could do it? The hard things? Yes, with God’s grace for my specific call, I know I can do some hard things things because I’ve already done some hard things…
But man, if I am being honest, it still scares me. A lot.
My son has a rare metabolic disorder, and for the first year of his life he needed to be fed every three hours, day and night, because otherwise his blood sugar levels would plummet and he could could go into a coma. So I fed him, setting an alarm night after night and never sleeping more than 2-2 1/2 hours at a time for almost a year. I got that comment ALL THE TIME, the “I could never do what you do”, mostly regarding the massive sleep deprivation but also just the general idea of parenting a child with medical needs. It’s always bothered me a lot, because of everything you mention here. I do think people usually mean it as a compliment but all I could think was that most people have no idea what they are capable of, the complete surrendering of self that we are ALL capable of, if the need arises and we let ourselves love the way we were made to. Yes you could do it, and you would, and no my life doesn’t suck! My life is 1000 times better because of my son.
By the way, Kelly, I have gained an enormous amount of encouragement from this blog over the past two years, you were one of the first special needs parents that I found online and I appreciate you a lot. Thank you for this post!
I think there is a maturity gap between people who have walked with God through some hard stuff and those who have walked through less. That maturity gap is noticeable. We recognize this in many situations, like between the Mom of older kids and those who just had their first baby. We note this when we say things like, “It goes fast.” Wisdom and maturity are sometimes hard won, and often misunderstood. Sometimes people who are more mature than us, by way of hard trial – be it beautiful or not, are intimidating. Hard things make you outgrow many petty things, and that is as it should be. No need for the pedestal, but the recognition of greater growth is natural. Thanks for recognizing the need to express these thoughts in words. It is so helpful to have people who can use gentle grace to lead others with their words as well as with their example. Bless you.
THANK YOU for writing this. The way you wrote in such a conversational tone and straightforward manner made this concept so approachable. I don’t have any children with special needs, but I hear this message (“I couldn’t do that!”) just over my having five children and homeschooling them.
Thanks for a great post!
Dorothy Day used to hate it when people called her a saint. She said people say that so that they can dismiss you. They don’t have to do anything themselves because “only a saint would do that.”
Something else to think about, with as many abortions as have been done for “fetal abnormality”, you don’t know what in their past they may be justifying to themselves. That, to me, requires a merciful response.
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