2 Brothers with Spina Bifida

The first time I met this precious family was in the waiting room of Riley Children's Hospital in Indianapolis.

I remember it so well. The couple was our age, and she was beautiful with a precious baby bump growing. Close by them was an adorable little boy about Adria's age. He had the biggest smile and energetic personality, and he was cruising around the waiting area in his little walker.

Dara and James with their handsome boys last fall.

I was quite sure that he too had spina bifida as I noticed his leg braces (AFOs), and we were all waiting together for the Myelomeningocele clinic after all.

It was amazing to see him, as this was the first time we had ever met a toddler who was Adria's age with spina bifida. This came at a critical time for us as Adria was over two years old, and her physical therapist had been working with her for months on using a walker and getting around more independently that way. She was just struggling to get the hang of it, but we so desperately wanted to see her take more steps using the walker. And here was this little guy who seemed to have figured it out.

Just a few minutes of waiting, and I couldn't help myself. I had to say hello and learn more about this incredible little boy who so confidently made his way around. Plus, we were still new to Indianapolis and I was open to making friends whenever possible.

I said hello to his mother, Dara. We talked for a few minutes, and it's hard to express how refreshing it was to talk face to face with another mother who had experienced so many similar things with her child as we had. Her son was just a few months younger than Adria. Their story was similar yet different, as she told me that it was a surprise to them when their son was born with spina bifida...the ultrasound had not revealed it like it had for us. I could only imagine how hard this had been for them. But she talked about his progress and different experiences. Her eyes were full of love, but there was something else there...a look of exhaustion or even fear?

Soon it became clear why. They had just learned that the baby she was carrying was another boy...and he too had the severe form of spina bifida, myelomeningocele.  My heart went out to her. I think I gave her a hug. I hope I did.

It had been such an involved, wild ride caring for Adria's needs those first two years of her life, and I knew that much was yet to come. How hard would it be to manage all the therapies, doctor appointments, medical bills and special needs for TWO young children with spina bifida???

Four years later, I can tell you that it has been difficult for this family. We were able to see them again a couple times while we still lived in Indianapolis and meet their second little boy. And we have remained in contact through Facebook, where I can pray with them as the boys face setbacks and rejoice with them in their progress.

Their boys have been through so much, and it seems the youngest especially has needed multiple surgeries and faced countless challenges.

Through it all, I see this couple loving their boys unconditionally and constantly fighting for them to get the best care and opportunities. Honestly, it can be very difficult when you are a hard-working middle class American family. The parents both work and like us, make just enough money to not qualify for much of the government assistance that exists for children with special needs. This leaves them and us constantly battling with health insurance to gain access to medical equipment and coverage for critical services/surgeries that can have a huge impact on our children's well-being. The annual out of pocket costs can be...daunting.

Dara just posted the other day, that they are finally being able to meet with officials regarding a special medical waiver they applied for years ago. Praying this goes well for them!

In all these experiences, this family has gained a unique perspective on what really matters in life which also comes with a sense of exasperation over complaints of petty things. I feel like I can really relate sometimes.

James and Dara with their boys in 2013

Recently, Dara shared her heart in an on-line post that comes from a woman who has been there...through the really, really tough times. She is a nurse and has witnessed many others battling their own issues. I asked her if I could share this with you, so here is some food for thought from a Mom who knows what it is to love deeply and survive in the struggle:

In Dara's Words

Coming from a different perspective, in which I've learned to always think about the other end before I say something: 

1. All of this fad on social media with breast feeding vs formula..please be cognitive of those mothers, such as myself, who weren't able to breast feed or pump to feed my children thru an NG or OG tube because of stress and no appetite and constant worrying of the unknown with living day by day regarding the health of my children in NICU...so does that make me or others bad mothers for choices or circumstances? Stop saying breast is better...good for you, but other mothers don't need that blasted in their face. 

2. When you say you've been blessed with healthy children and God is good, think about how it feels for parents to hear that who have children with special needs or health problems..is that implying He wasn't good to us? Talk about salt in an open wound. Yes, we are too blessed. 

3. Don't say something is "retarded"...seriously, think about if you personally experienced a family member who was cognitively impaired or delayed. You're missing a sensitivity chip. 

4. Before you speak and say such things, that your life is so bad or a situation is so bad you could shoot yourself or kill yourself, be a little sensitive because there are those who have personally experienced that in their families. 

5. I won't even go there with "short bus" comments because you're just making an ass of yourself to even make a comment regarding that. 

6. Think about those struggle to get pregnant because you could be complaining about how bad it feels or horrible feeling being 9 months pregnant. I'm sure those who can't have children would love to feel that and appreciate every moment..what if you're complaining to that female who can't get pregnant. Can you imagine how they feel?

I could go on and on...I'm just saying, try to think beyond the box...unless you prefer to be content in your own. Maybe I just care too much about others, which I've learned there's more to life than just my own.

I'm just hoping this will help people see from another point of view that I have been guilty of not seeing and people have helped bring to my attention, as well as my own experiences. Don't get me wrong, I do get offended easily and pissed off initially on certain things because that's my protective motherly instinct, but I have to step back and realize they don't even know what they're saying. It's all just something to think about...

Dara's youngest son recently making progress with the Gate-Trainer.