Special Needs Spotlight || ‘Tough Guy’

Hi! We are the Snigs! Despite being a fairy introverted, quiet person, my husband and children bring me out of my shell.  We love having family and friends over to hang out any day of the week and our house is a bit loud, somewhat crazy, but always fun.  My husband Dan and  I met in College and are proud and loud Ohio State Buckeyes.  We’ve been together ever since our first day and now have three little Sniglets. Our first child, Turbo Man is 6 years old.  He loves anything with sports or numbers.  He is energetic, sensitive, quiet and independent first born.  Tough Guy is our 3, almost 4 year old little man. He loves superheroes, legos and cute little toys.  He has a rare condition called OEIS complex- a series of birth defects of his abdomen and spine.  You can find him wheeling around in his wheelchair, giving orders and making everyone around him laugh.  Tootsie Pop is our little lady.  She is 15 months old, toddling around and inquisitive about everything.  She is a happy little thing and keeps us smiling.  

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Miggy:  Hi Jill!  Thank so much for participating it today’s spotlight and sharing your son ‘Tough Guy’ and his story with us today.  Can you take me back to the day you knew your son was going to have special needs? Was this at an ultrasound, at birth or sometime after? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Jill:  Thank you so much for inviting us to be a part of the spotlight!  I love reading and learning about each person’s journey because they are all so unique. When I was trying to wrap my head around Tough Guy’s diagnosis it was so therapeutic to read of stories of inspiration so that I better understood the ins and outs and beauty of special needs parenting.  Our special needs parenting journey began when I was 24 weeks pregnant with our second child.  I’ll never forget April 5, 2011.  My husband and I walked into our mid pregnancy ultrasound; the anatomy scan where they check to be sure all the baby’s parts are in the right place and you can find out the gender if you want.  We always like surprises, so we walked into this appointment hoping for a nice scan of the baby, maybe a sweet picture of him/her and we hoped to walk away knowing our baby was healthy and we could be smooth sailing for the rest of the pregnancy while we awaited our little surprise.  We walked out heartbroken and lost with many questions and no answers, except that we had a baby boy with multiple and severe birth defects.  They saw on our baby’s scan that he had spina bifida (meaning a split in his spinal cord), club feet and an omphalocele (some of his abdominal organs were growing outside his body).  Our supportive and pro-life doctor, believed he had a condition that was incompatible with life. He prayed with us and referred us to a high risk specialist to perform an amniocentesis so we could have a clearer picture of what his diagnosis may be.  This would tell us if we would need to plan for surgeries or prepare for our ourselves knowing our baby would only be with us for a short time.

After weeks of testing we learned that our son did not have the condition he believed that was incompatible with life, rather he had OEIS complex.  OEIS is compatible with life, but our baby would need many surgeries throughout his life to help allow him to live and to improve his quality of life.  OEIS affects one in every 200,000 to 400,000 births and has unknown causes.  OEIS is a series of birth defects affecting the abdomen and spine.

Our hearts were broken and our while we remained Faithful in our loving God, we had so many questions.  We had one healthy, happy child and I remember not only being afraid for my unborn son who faced so many challenges, but I was so scared of what this meant for our family and my young son.  I just remember thinking I would never be able to mother Turbo Man the same because I would be constantly taking care of my new baby that could be in the hospital for so long.  I truly felt like everything I had planned and hoped for got thrown out the door.  I felt like I no longer had any control of my life.

It took time and faith to heal,  but most importantly, love is truly what carried me to healing.  Our family and friends rallied behind us.  Neighbors and strangers prayed for us, and when we met our little Tough Guy we loved him so much, we couldn’t imagine not fighting this battle with him.  

Miggy:  Please tell us a little about your sons diagnosis–what are the characteristics and hallmarks of OEIS and how does Tough Guy’s needs affect your day-to-day life?

 

Jill:  OEIS is made up of 4 major birth defects and sometimes those four large ones contribute to smaller ones, such as lower limb defects like clubbed feet.  The O stands for Omphalocele meaning that the intestines and sometimes other organs grow outside of the baby’s body.  The E stands for Exstrophy of the bladder.  The bladder is formed outside of the body, split in two and inside out.  The colon also is outside of the body, if the child is born with any.  Often children have very little colon.  The I stands for imperferate anus.  This means that children with OEIS need an colostomy to expel wastes. And S stands for Spinal Defects.  From the people we have met in person or online with OEIS, we find that while most of the children have each of these 4 birth defects, and each case is unique.  For our little Tough Guy, his spinal cord was the most affected.  Because his spinal cord was damaged and he moved less in utero, he also developed clubbed feet.  

Most of the time, Tough Guy is like any other three year old.  He loves spider man, little people, using his imagination, talking back to mommy and admittedly does not like to share.  He does however have a few unique things about himself.  He is paralyzed from the waist down so he uses a wheelchair, scoots or army crawls to get around.  At times, this can be challenging, especially when places are not very accessible for a wheelchair. We have done our best and continue to adapt our home and his environment so that he can get around and easily play in the space around him. Tough Guy also has a colostomy bag for his restroom needs.  When he was first born I was very intimidated by this, but we are all used to it now and it is pretty easy to maintain. (Sometimes easier than a messy diaper!)

                                                                           

                         

Miggy:  What are the biggest worries you face for your child?   

Jill:  I want more than anything for my children to know they are unique and special AND that everyone else is too.  My hope is that they always love themselves and are confident in their abilities.  My biggest worries are that others with not embrace their uniqueness and make them feel alienated or inferior.

I never mind when people come up to us and ask about Tough Guys wheels.  They are a part of him and how he lives.  I would be curious too… but I do fear that people (especially peers) will speak behind his back, make assumptions or make fun of his abilities or his tools that help him thrive in his world.

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Jill:  Ah! Yes!  I think we are so used to it, that I am certain we say things that are part of our normal, but I am sure sound pretty strange to others.

Tough Guy takes medicine to help his bladder grow, so we call it “big bladder medicine”.  When he doesn’t want to take his medicine he yells, “No, I don’t want to take Big Bladder!” or when he loves taking his Tums (to help with bone density), “Can I take Strong Bones today.  I love that one.”

And then of course every once in awhile we have a colostomy bag explosion and really all you can do is laugh.

Miggy:  How can people best approach or respond to Tough Guy? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jill:  I think the best way to approach Tough Guy, is to approach him just as you would anyone else.  He has an awesome smile, a contagious spirit and I think when most people are around him, they want to be his friend. I would hope no one is afraid to approach him and while I know the wheelchair can be intimidating or watching him slowly scoot across the floor is not usual, he CAN do it all himself and he doesn’t need to be babied or pitied.  It’s just his way of doing things. I don’t ever mind when people ask him about his wheels or why his legs don’t move, but it is uncomfortable when someone says in front of him, “I feel sorry for him.”  While this may be a natural reaction, it can be very hurtful and hard to explain to your child. I hope that others get to know him and all the awesome things about him.

One thought that helped me to not feel sorry and to help look at the soul verses the physical being was this… When Tough Guy was just a baby and Turbo Man was a few years old, I imagined flip-flopping them.  What if Turbo Man was born with OEIS, couldn’t walk and had an colostomy, but had his same sweet spirit and inquisitive nature? I would still love him just the same.  What if Tough Guy could walk and run around and still had his silly spirit and contagious smile? I would still love him.  The lesson I learned in this, is that it’s not the outside abilities that truly make a person unique.  It’s what their spirit contains and shares that make them who they are at the core.  Yes, wheeling  is part of Tough Guy.  Not being able to move or feel his legs does affect how he lives.  And being fast and playing sports is part of Turbo Man, but without those activities, they would still be the same.  I try to do this now when I meet other children too.  What truly makes them unique and special?  What is it that their spirit is about.  I hope that others do this for my children too and don’t just see their outside abilities as their whole self.

Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son?

Jill:  Tough Guy is smack dab in the middle of my other two children.  Turbo Man is 30 months older than Tough Guy and Tootsie Pop is 30 months younger (As much as I would like to say we planned it this way, it just ironically turned out this way.)

As I mentioned earlier when we received Tough Guy’s diagnosis, I really couldn’t imagine what this would do to Turbo Man.  I felt like it was so unfair to him that his parents would be ripped away from him and that he wouldn’t ever have a true brotherly relationship.  I was afraid we would never get to be with our oldest boy because of Tough Guy’s needs.  Boy, was I ever wrong.  Yes, there have been times when Turbo Man has had to be away from us while Tough Guy has had surgery, but with God’s Grace, we have received gifts along the way.  During that time, Turbo Man has had awesome quality time with Grandparents.  He’s learned patience and compassion.  On a lighter note, he’s also learned that bodily functions are just that, things that your body does to function.  He also has seen what a bladder looks like and knows it’s function.  He is totally no nonsense when it comes to how the body works!

Turbo Man and Tough Guy really do have the brotherly relationship I hoped they would have.  They sometimes fight, then make up, they play together, they share a room, and they stay up late “playing” when they are really suppose to be sleeping.  They can’t always play the same things, but they both have learned how to adapt and I am so proud of the brothers that they both are to each other

We always hoped for at least 3 children, so we felt so blessed when we had our little Tootsie Pop.  I was a little nervous about having another child to care for and I was worried about how Tough Guy would react to Tootsie when she started walking.  It turns out, he was really proud of her!  It also turns out that she idolizes and terrorizes Tough Guy all at the same time.  While he sometimes gets frustrated with her, he also gives her kisses each night and pats her head when she walks by him.  I am excited to see their relationship blossom.

When I was worried about having another abled bodied child, my husband put it in perspective to me. “It’s another person for Tough Guy to love and another person to love Tough Guy.”

Miggy:  If you could say something to the mom who just starting on this OEIS journey, what would you say?   What would you say to yourself if you could go back in time?    

Jill:  I really do wish if I had one insight when I was starting this journey, I would have wanted 1 thing.  Just the feeling in my heart of the love I have for Tough Guy.  Everything so was hard when I was pregnant and even in his first few months of life as we navigated.  I loved him, but I was exhausted and physically and emotionally spent.  I was afraid, because I really didn’t know what our future held.  If I would have felt this immense love explosion in my heart, I would have known that there really was hope in every step.  I would have known that while it is not at all what I planned or what I would ask for my child, I couldn’t have loved him anymore.  And that love, though it doesn’t always take away the pain, it does make every step worth it.

Miggy:  What is the biggest lesson you’ve learned since becoming Tough Guys mom?

Jill:  I have learned so many things about the world and myself but here are a few..  Spiritually, I have learned that while I like to think I can plan everything, I really have to step back and look to God to guide me.  I have always been a spiritual person and a faithful Christian, but having Tough Guy has allowed me to really think about our Lord’s sacrifice and His Love for us.  It has reinforced my belief that we are all unique and special and that God truly does have amazing plans for us all.

On a practical note, I have learned that I really shouldn’t stress over little things.  Sure, sometimes Tough Guy needs a little extra support, but if I dwell in the can’ts, I will miss out on the can’s.

And, I have also learned that there are SO many amazing people out there.  There are prayer warriors that will pray and cheer on your child, even when you have never met.  There are families facing many difficult situations and I am always in awe of their stories and strength.  I am not sure I would have heard these stories had I not become a special needs mama myself. Feel free to read more about our family over at our blog Snigleness.

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Jill thank you for sharing your beautiful family with us! I have to say I found way too many similarities to your family and ours–middle child in a wheelchair/powerchair and with that so many similar interactions with people in public and even many of the same thoughts I’ve had over the years…weird. (Cue twilight zone music.) No wonder I loved it–ha!  One thing was when you said that if you dwell on the cant’s you will miss out on the cans.  Preach!  Our kids abilities vastly outweigh their disabilities.  While that might not be true for every person with special needs, I think it’s still an important thing to consider for the vast majority.  Lastly, I love when you talked about the grief and shock of finding out about your son and his disabilities, but that love is ultimately what carried you to healing. When finding out about a child’s disabilities fear can play a really strong role in the immediate grief, but then when you meet this child you’re like “oh yeah… I love you to the moon and back…never mind, we’ve got this.”  And what once may have seemed insurmountable and burdensome, just feels like love.  Thanks again Jill!  And big hugs to your amazing kiddos.  

As always if you or someone you know would like to participate in the special needs spotlight please email me–or have them email me directly–at thislittlemiggy at gmail dot com.  

Have a fantastic weekend!