Thursday, February 13, 2014

Showing More Love: Family With Special Needs

Today's post comes from Mary Evelyn Smith who blogs over at What Do You Do Dear?.  On her blog, Mary Evelyn writes about life with her sweet son, Simeon, who has spina bifida, and shares honestly and openly about the joys this little guy brings, as well as the challenges involved with his disability.  As a review of Mary Evelyn's blog, I quote Larry the Cucumber, "I laughed, I cried.  It moved me, Bob".  Today she shares how to show love to a family with special needs.

Love after Diagnosis: Five ways you can help a special needs family

When you find out you’re going to have a baby, it feels like happy and ecstatic and anxious all at once. Pregnant gals are excited gals. But when you find out your baby has a disability, it feels like sad and mad and why-hast-Thou-forsaken-me—on top of the other lovely things above.  My point is— it’s a lot of feelings.  And when I learned at our 20-week ultrasound that my son would be born with spina bifida (a permanently disabling birth defect of the spine) I spent a lot of time just hanging out with my emotions. I was trying to hold them steady.  I was trying to keep them under control.  And when I wasn’t battling my fears and my utter heartbreak, I was scrambling to snatch a sense of peace that felt just out of reach.

Grief is never pretty and it passes slowly. Yet even while I waged war in my heart and melted under the heat of my own disappointments, there’s one emotion that did not desert me.

Love.

It wasn’t a heavens-parting love or a love made manifest in secret signs from the Divine. It was so much simpler and so much stronger than that.  The love of my Creator came to me from a village of supporters.  It was my friends and family whose gestures of kindness made me see love where it would have been easy to find loneliness.  My community was the go-between I needed—they delivered God’s mercies to me in ways I could not have imagined.

And it made all the difference.

It doesn’t matter if our children are diagnosed before or after birth.  It doesn’t matter if they have spina bifida or autism—you can help by showing love in the midst of uncertainty. Here are five simple ways to bring the love (with a few gifs thrown in because they’re kind of my favorite).


#1 - Show up



You can drop a note in person or via text. You can leave a voice message or send a singing telegram.  Anything that says, “I haven’t stop thinking about you and I haven’t stopped praying.” Learning that your child has a disability feels very isolating. It’s easy to assume that the world is moving on without you. So when friends and neighbors find little ways to show up during this time and in the months that follow, it makes all the difference. 

#2 - Bring them food


Grieving parents don’t eat. They just plain don’t. I remember spending hours reading about my son’s condition, only to realize I had blown right through lunch and dinnertime. Each meal dropped at our door was a reminder that I needed to take care of myself. Try to bring something that reheats well and, if possible, use a container that doesn’t need to be washed and returned.

#3 - Learn about their child’s diagnosis


You don’t need to know everything but a general idea (what the diagnosis means, what kind of life changes the family is preparing for) is immensely helpful.  Every time a friend said, “I was reading about spina bifida and I saw that…” I felt so very cared for. Parents like me spend a lot of time explaining our situation and educating those around us. When you take an interest it reminds us that we aren’t in this alone.

#4 - Let us feel sorry for ourselves (at least for a little bit)



I know it might sound like a strange request, but sometimes we just need to wallow. Sometimes we need to cry and shake our fists and ask why. We won’t stay down forever but feeling blue is an important part of the process. It’s not your job to fix it—even if you wish you could. Unfortunately, platitudes and a “buck-up” mentality can do more harm than good. Sometimes the best thing you can say is, “I don’t know what to say but I’m here—and I’m so glad you shared your feelings with me.”


#5 - Celebrate our kids


Offer to host a baby shower. Give us tiny booties. Help us decorate the nursery. Treat our unborn child like the blessing that they are. Experiencing tears does not mean laying aside joy. When my friends got excited about meeting my son, it reminded me that his birth was in no way a tragedy. My son wasn’t just precious to me—he was wonderful to others as well.


Alright—get out there and start a love train, y’all!


9 comments:

  1. SO PERFECT!!!! I love how I got choked up WHILE laughing at the gifs!! haha Perfectly expressed as usual Mary Evelyn!! :)

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  2. Happy Valentine's Day to Mary Evelyn, Simeon, and Greg! Lesley and Zoe want to get together with you. I love following your blog!

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  3. also just as important for families of special needs kids without a diagnosis! lovely post :)

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  5. This is so great! Thank you! God bless you all!

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  6. You definitely have it covered, Mary Evelyn! And I'm glad you threw in the part about sometimes the diagnosis comes after the delivery. For us, it was a typical pregnancy all the way, with no indication whatsoever that Kyle would be born with special needs. Ours was a slow discovery that started a week after we brought him home from the hospital. Either way, though, everything you listed above is exactly what I needed!

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    1. Yes! I'm so glad it's the same needs on both sides. I've only done it one way and sometimes I think we had it easy because I was able to really grieve without caring for my child at the same time. I think I was able to be a bit more selfish in my grief process, ya know?

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    2. That makes sense. I often wonder how it would have been different if we had known what to expect before Kyle was born. It definitely made me question a lot of things when I was pregnant with Kaylie just months after giving birth to Kyle! My pregnancy with her was much the same as it was with Kyle, but I worried more, wondered about the birth process more, prayed differently, etc. because we still didn't know (and still don't know) what caused all of Kyle's disabilities.

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