Friday, April 17, 2015

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!  

Wednesday, April 15, 2015

An Addendum to our Texas Vacation


On our flight home from San Antonio, Lamp and I sat next to a nice, semi-chatty lady.  I mean she was the right amount of chatty--she gets to know you a little, asks a few questions, and just when you worry you might be subjected to a 2 hour in depth, life story type of conversation she falls asleep for the majority of the flight letting enjoy the last leg of your trip. Additionally, I appreciated that she started chatting with Lamp like it a'int no thang because a lot of people do the overcompensation routine.  Which I honestly understand.  But when people don't miss a beat and just talk to her like they would any other 4 year old it's always refreshing. Anyway, before the flight even takes off our row mate discovered that she had lost a bracelet. I would not say she was freaking out, but I would say she was distraught. She got a flight attendant to call TSA to check the counter for any lost and founds. No luck. As I said, that was before take off. As we're getting ready for our final descent, our row mate starts rummaging around in her stuff and she asks me, "Did you notice me wearing a fanny pack?"
"No.  I didn't." I say. 
"I swear it was right around my waist," as she motions with her hands showing where the fanny pack should be.  "These pants are just so tight I thought I had it on."  It's true.  She was wearing some black workout type leggings and I could see how those cinched around your waist could mimic the snug, secure feeling of wearing a fanny pack.  

She continues to look through her stuff.  Under her chair, even standing up checking and rechecking her waist. She asks me again, "I'm sorry...I know I already asked you but did you see me wearing a fanny pack?  It was around my waist..." And she continues to do the motioning around her waist movement.  I'm a little startled by what is now starting to verge on crazy, but equally startled by how much I relate to her.  

I hate loosing things. I go nuts when I've lost something it and was just RIGHT THERE.  So honestly, I am really feeling for her at this point. Unlike the bracelet incident earlier, she's definitely operating at a code red, level 5 emergency. I mean she's not yelling or anything, she's calm but you can see and feel the tension in her body. As it turns out her wallet containing her credit cards, drivers license and what sounded like a good amount of cash were in her fanny pack so of course this is a rather big deal. Even in terms of first world problems, this sucks and is something we can all empathize with.

Lamp, trying to grasp why this is such a big deal asks her whats in her wallet.  As the woman rattles off the laundry list, Lamp hears drivers license and says, "So now you won't even be able to drive your car without it? How are you going to get home?"  
"I hadn't even thought of that... but yeah, you're right."  Lamp smiles proudly, happy she could think of something a grown up hadn't thought of. We look all around, we check under seats (again) and we help as much as we can.  It just wasn't there and she finally concedes that she must have left it at TSA.

A thought keeps coming to my mind, but I push it aside a few times.  Finally, I just say it.  "Lamp, maybe we could say a prayer to help her find her fanny pack.  You don't have to say it out loud, but you could just say it in your heart."  
"I'm just going to say it in my brain mom."  
"OK. That sounds good."
  
I said this out loud. As you often feel helpless in these situations I wanted her to know my heart went out to her and that we were doing every little thing we could do to help.  So we both bow our heads and say silent prayers for our row mate to find her wallet.  I probably wouldn't have suggested this if she hadn't already shared her love of Joel Osteen and asked me a handful of questions about Mormons which she had guessed was our faith when I told her we had family in Utah.  And even with her openness regarding her Christianity I still had reservations about praying for her, but she was visibly moved which made it feel like the right choice.

I just want to stop the story for a second and say a thing or two about prayer.  Some people like to pose the question, 'does prayer work?' And what they mean is when you pray for something do you get what you're praying for? And the answer of course is sometimes yes, sometimes no. I would be lying if I said I didn't pray to ask for things I want. I do. I pray to God and ask for tangible and intangible things all the time. And sometimes I have gotten those things. Sometimes miraculous things. But sometimes of course I have not gotten the things I have asked for. But prayer is much more than simply a plea to God to get what we want. To be honest I'm still working on figuring this out in a way that satisfies my brain, because it feels rather complicated but suffice it to say that prayer has a lot to do with aligning our will with Gods will and being OK--or just ok--with the outcome. But still what sometimes feels frustrating is that something that used to feel so easy and simple as a kid, feels so much more complicated and full of questions as an adult. I say all this so that you understand that while I was certainly hoping our prayer would "work" I don't think of prayer in those black and white terms.  CS Lewis has some really good thoughts about prayer that resonate with me.

OK, back to our gripping tale. As the plane was taxing and as we were leaving, our row mate was on the phone talking to TSA in San Antonio.  For a second it looked like they might have found it, but then her face fell and she said, "Oh. ok." And that was it.  We had to catch our connecting flight so we left.    

Later in the day, a couple hours after arriving home, the phone rang.  

"Is this Mrs. X?"  
"Yes it is."
"Did you have a flight on United earlier today?"  
"Yes I did."
"Well I'm calling from United Airlines and there was a woman I believe you sat next to on your flight today who lost her fanny pack?"
"Yes...."

A slight unease came over me.  See, I have this fear that people think I'm lying to them. This stems from the fact that I've had close relationships in my life with people who lie a lot and because I'm now much more suspicious of other people, I assume other people are suspicious of me.  So a small part of me assumed that this lady silently suspected that I had stolen her fanny pack and thus was forcing the airline to contact me as a suspect.  Perhaps this is an odd thing to worry about, but it's true 

The woman continued, "She wanted us to contact you and tell you that she found her fanny pack. She was so touched by your daughters prayer for her that she really wanted to say thank you. She had tried to find you at the gate but you had already left. She was telling all of us around her about your daughter and the prayer and we were all so touched by her story as well.  She was crying and we were getting teary eyed...So we just wanted to contact you and relay the message."  

And then I was crying.  (By the way if my eyes water, that's crying in my book). We talked for a minute more then I got off the phone and told Lamp the whole story.  She was beaming from ear to ear.  She was so excited to tell everyone she knew about how she said a prayer for a lady to find her fanny pack and she found it AND the airplane people even called to tell us!  She even used it to bear her very first testimony in church on Sunday.  (Mormon stuff...I have links if you care to know what I'm talking about, but in short we have a fast and testimony meeting once a month in the Mormon church where it's basically an open mic Sunday to share our feelies about all things Mormon. As you might suspect the nature of these meetings can range from sacred and spiritual to crazy and uncomfortable).

My initial feelings were that this experience was divinely crafted for the benefit of Lamp.  A faith promoting experience in her youth to hold onto and cherish for years to come. A woman found her wallet because of her prayer.  I know it may sound silly to some, but we practice this form of positive reinforcement in other ways all the time. Santa came because you were good this year is not that different from God wanted you to know He heard your prayer. Right now my kids don't need to know the truth about Santa, they just need to know they're good.  They also don't need to understand the complicated reality of prayers--both answered and unanswered--they just need to know their prayers are heard.

And while I do think this experience was for Lamp, I also think it was for me.  It had been a while since I felt a prompting and decided to act on it. Lately Mormonism and faith has felt so complicated, just like prayer itself.  Black and white on the surface, but a crazy pattern of multifaceted greys underneath. I forget that sometimes faith can be really simple and straightforward. I think God wanted to remind me of that.


Monday, April 13, 2015

I Left My Heart in Texas

Dinner at Rodeo Goat in Dallas.  Great burgers and ambiance if you're in the 'hood.  

OK, not really. (NOT REALLY B!) I need to shout that so B knows I don't mean it.  My heart, as always, belongs wherever my family is.  But I left some of my very best friends in Texas, which is like leaving a little piece of my heart.

Last week Lamp and I took a trip to Texas for business and pleasure.  Except that I'm going to stop saying the word pleasure, because eww.  So the business portion of the trip was to see Lamp's doctors in Dallas and the fun part of the trip was seeing our friends in San Antonio.  But really taking a trip with just Lamp was super fun all on its own. From the airplane ride on we had a great time and I realized that I really want to do more one on one traveling with my littles as they grow. I've always suspected I'm one of those moms who will enjoy having older kids a little bit more and I'll submit this trip as evidence A.  Because airplane travel with a 4 year old is awesome.

Kicking off the trip with silly selfies in the terminal and on the plane was a great way to start.  

The business was good.  Scottish Rite hospital in Dallas in a phenomenal place and really THE place for Lamp.  Which is funny because Cincinnati prides itself on it's amazing Children's hospital, one of the best in the world.  Lamp was born here, B did his residency here, we know the place and agree that it's a great hospital. A few people have asked us why we would go to Dallas when we have a great place at our fingertips. In case there are any fellow limb different moms out there, I'll just tell you that over the years we've met a lot of really good orthopedic surgeons, but only one Dr. Herring.  He works specifically with limb differences.  When we lived here in Cincy and saw a team of Dr's who said more than once, I've never seen anyone like her before.  Dr. Herring is the only doctor who has ever said, I've seen a hundred kids like her. And it's true. Not to mention he is a very kind man.  I've written about our trips in the past for any fellow limb different/orthopedic moms you can read these posts here and here.  (The hospital also runs a camp for limb different kids each summer and we can't wait to go next year.  You do have to be a patient of the hospital to participate, but please email me if you have any questions.)  

But San Antonio.... sigh.  It was dreamy.  Cinderella--the 80's band not the Disney princess--really sums up my feelings well in their 1988 power ballad Don't know what you've got till it's gone.  Everything from the weather to the local eateries to my favorite 'hoods was tugging at my heart-strings. And then there are our friends. You know how there are people in your life whose presence you try so hard to be in as often as possible because for whatever reason you just click?  Sure there are obvious connections like interests, background and personality but for some people this magnetic attraction goes beyond the things that look good on paper. There is, as my French friends say, that certain je ne sais quoi.  (pssst...I don't have any French friends). Now the truly amazing thing is when these awesome/amazing/funny/cool people you are drawn to so much want to be your friend just as badly.  Boom. That is friendship magic to the max and it doesn't happen very often, so when it does you treasure it. That is my friends in San Antonio. Friends who drive up to Dallas with 2 kiddos, stayed the night with us in a hotel, hang out in Dallas during our appointments and then drive us all back down to San Antonio so we could hang out for the weekend.  5 hours each way with a 4 year old and almost 2 year old in tow. Friends who invite us to stay in their home complete with a Lamp size bed on the floor (as requested because Lamp rolls off her low-to-the-ground bed erry night) and a basket of snacks, water, chapstick and welcome cards from her kiddos waiting for us on the bedside table.
Friends who call before you're even in town wondering where you are and when you'll get here and who come by for a spontaneous last minute visit the night before you leave.



I love these women and their families to the moon and back.

A couple more pics of our trip...
Tea parties on the mini trampoline.  Brilliant.



Backyard swinging.

The kids decided to do kiddie yoga one day there was a part of the video where they were supposed to make spectacles for the eyes and when I looked over I saw Lamps friend helping her out.  I absolutely love watching children figure out ways to include Lamp in activities and outings.


Visiting our favorite story time reader ever, Miss Anastasia. If you live in SA make sure you head to Twigg bookstore in the Pearl on Friday morning at 10:30 for story time.  You will not be disappointed.



We had so much fun.  But as much as fun as we had with our friends and San Antonio, coming back home trumps everything.  Always.

XO  Migs


sorry for the radio silence...should be back to regular posting this week.  Still looking for spotlight volunteers so please email me if you'd like to participate!  If you know someone who would make a good spotlightee please have them email me. I really need to hear from a participant first hand to do a spotlight.  Thx!

Wednesday, April 01, 2015

The TALK


Sorry for the crickets around here, but Lamp and I are getting ready to head out on a little mommy/daughter trip to Texas and we've been battling various sickness around our household.  Hopefully we're over the worst of it!  As far as Texas goes we're heading back to see her orthopedic docs in Dallas and then we're headed down to San Antonio for a few days to see our friends and visit our old stomping grounds.  I'm so excited.  It's no secret that I miss Texas something fierce these days  and I'm really looking forward to a trip with just Lamp and I--something I'd like to do with my other kids at some point too.  That being said last month on our trip to Florida was the first time we've flown on a plane with Lamp and her power chair and we're going to do it again today--it was an interesting experience, something I might write about in the future.

But today I've been wanting to throw another question out there, something that has been on my mind a lot lately--the talk.  You know... the sex talk.  A couple of years ago I had heard from various sources that a good time to have the talk with children was when they're 8 years old.  The idea being that they're old enough to understand, yet young enough that they won't be completely mortified to be discussing this with their parents (gah!) of all people.  Additionally, I think the idea is also that as parents you want to get to them before other sources do--kids at school, TV/Movies, etc--and help them understand the proper role sex plays in our lives.  This book is one that a lot of people have pointed to as a good guide to having this discussion with your kids.  (I've purchased it, but have yet to read it.  Also, I believe the authors are LDS FYI.)  They authors advocate taking your child out for a special night with just him/her and both parents.  They talk say you should really talk it up like "hey, we're going have a great evening and we're gonna tell you about something really cool!  This is going to be so awesome!"  Or something along those lines.

So a couple of years ago when I first heard this idea I was totally on board and thought this was a great idea.  Fast forward to the present and I've got cold feet.  Do we really want to have the talk now?  Isn't she too young?  How much do you tell/don't tell? 

So internets what say you?  Is there a fool-proof way of having a great sex talk with your kids?  Have you done this in a formal manner or was it off the cuff?  If you are a 2 parent home, were both of you there or just one?  What about when you were a kid--did your parents have the talk with you and did it go well?  Does that affect what you want to do with your kids now?  Personally I didn't like having 'the talk' with my mom... I was 12, it was embarrassing and in general I just didn't like it.  Which is one reason I think I'm so hesitant now.  I want this to be a good experience, but at the same time I can't control how my children will react and perhaps like many things in life there will never be a perfect time.  I'd love to hear your thoughts, experiences and suggestions!

Friday, March 27, 2015

Special Needs Spotlight || Silas




Hi!  I'm Allison, wife to Sol and mom to Silas our super rare #smalldude.  Sol and I are two small town Nebraska kids who now call Kansas City home.  He loves CrossFit, I love Starbucks, and we both love our little medical mess.  Silas was born with a rare genetic abnormality called 9p23 deletion 16q trisomy.  It is so rare that it doesn't have a name and isn't classified as a syndrome (that we are aware of).  Our little guy is quite complicated, but I will try and make things a bit easier to understand.  He is missing information on the short arm (p) of his 9th chromosome and has duplicate information of the long arm (q) of his 16th chromosome.  The additional piece of 16 is attached to the 9th chromosome where the information is missing.  This makes for an unbalanced translocation which has caused many anomalies throughout his body.  This "mix up" is de novo (new in him) meaning we are not carriers and won't pass this abnormality on to future children.  We are currently enjoying being first time parents and taking things day by day as we navigate through the special needs world.  You can join us in our journey by following Mighty Si #smalldude on Facebook (www.facebook.com/smalldude).     

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Miggy:  Allison, thank you so much for being here and sharing your story today.  Can you take me back to the day you knew you Silas would 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?

Allison:  During our 20 week ultrasound, we found out that Silas' stomach was not very big and they were having trouble seeing it.  Then we were sent to a perinatologist's office, where we were told that our baby's heart was abnormal.  From that appointment on we had many different tests and ultrasounds and more negative reports.  We chose not to do an amniocentesis because it wouldn't change the outcome.  We did have a blood test done (Harmony Test) that screens for Trisomy 13, 18, and 21 which came back normal.  Since we did not do the amniocentesis we didn't really know what was going on with Si until after he was born.  After learning that Si had all of these issues, we were obviously completely devastated.  This went from being what was supposed to be one of the most special, best times of my life to the worst.  Every day, I prayed and prayed that all of these things were structural and could be fixed and of course I hoped they were wrong.  On May 3, 2013, Silas Solomon was born with many congenital anomalies confirming a lot of the diagnosis he received in utero and also confirming my worst fear - chromosome abnormality - not fixable, broken, nothing we can do.  I completely shut down and was very distant, depressed and angry.  As a first time mom, you expect there to be this amazing connection but there was nothing and it was like this for a very long time.  This wasn't the perfect child I was expecting and the grief was so heavy and relentless.  Thankfully, I have an amazing family and great friends that stuck by me through the darkest, saddest times.  I think back now at that time and wish I would've known that everything was going to be OK.  



Miggy:  Explain how Silas’ needs affect your day-to-day life?  

Allison:  Currently, Silas is a pretty easy going little guy!  Our lives significantly changed when he was approved for in home nursing.  Sol and I both work and knowing we aren’t going to get a call to pick up a sick child every other day took a huge weight off of our shoulders.  When Si is ill, it sometimes takes weeks for him to fully recover and sometimes he even requires oxygen.  We are so fortunate to have the opportunity to be able to work and know our son is being well taken care of during the day.  Si is also non mobile and gtube (feeding tube) fed making for two of the biggest challenges we have faced in this season of our journey.  At this time he eats nothing by mouth and usually gets fed 5 times a day via gtube which generally takes 45 min per feed.  This isn’t a huge deal but it definitely has deterred us from doing certain things and going places when we know we have to pack his food, he’ll have to be hooked up, and there really isn’t a good place to put him.  Since he has graduated from his infant car seat and can’t sit independently, things like shopping or going out to eat pose problems.  It’s the little things we take for granted, like eating and sitting, that seem to be some of our biggest day to day issues.  Lastly, I can’t leave out the appointments!  Yep, every medical momma knows this is one of the most exhausting aspects of having a special needs kiddo, especially if both parents are working.  I’m pretty sure I cried when I got our list of first follow-up appointments for Silas, but somehow we’ve managed to make it work!


Miggy:  What are the biggest worries you face for Silas?    

Allison:  I worry all the time about Si.  Sometimes I worry too much because I know too much and other times I worry because we just don’t know enough.  Due to Si’s diagnosis a lot of things are unknown and there always seems to be a lot of grey area.  One of my biggest fears/worries as a special needs mom is that something would happen under my watch and I wouldn’t know what to do and ultimately not be able to save him.  Seeing your child struggle to breathe will put that type of fear in you.  I always feel like I am waiting on the next thing to present itself.  What is going to be the next issue to arise and will this be the something that will take his life?  Are the decisions we make for him going to be the right decisions?  Of course you have all the scary medical issues that you worry about, but there are also some of the more normal worries like will he have friends, how can I ever send him to school, did he poop today?!    

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?   

Allison:  I don’t necessarily have a funny story, but we would always joke about using Si’s oxygen to give us a boost if we were ill or needed a pick me up.  Thankfully, no one has needed oxygen recently in this house!

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

Allison:  Silas is a pretty approachable guy.  He also is only two (in a couple months) and is definitely not shy!  We haven’t run into too many awkward or hurtful situations, probably because of Si’s age, but I’m sure the time will come.  In fact, I’m guilty of making things more awkward by introducing Silas followed promptly with “he has special needs”.  I think I do this in hopes that it will avoid some of those awkward/hurtful situations.  I think for us, things get awkward when the “milestones” conversation comes into play – no Si’s not eating by mouth, no I don’t know if he’ll ever walk, no he isn’t talking, no he can’t sit, etc.  CRICKETS!  It’s awkward, but yet I’m not really offended by it because it is what it is.  I have to always remember that if I wasn’t a special needs parent, I would probably be that person asking those same questions!

Miggy:  I know that before I had a daughter with special needs I had a lot of ideas and assumptions about what it would be like to have a child with special needs.  Naturally, a lot of those ideas have changed.  Are there some ideas you had about having a child with special needs that have since changed? What would you like the world to know about being Silas' mom?

Allison:  When I found out Silas was going to have special needs, I pretty much thought that my life was over.  I remembered thinking he was going to be a shell of a person who was in a vegetative state (please don't be offended this is my own ignorance!).  I was sure that I would need to quit my job, stop doing anything enjoyable, and take Si to appointments everyday/all day for the rest of my life.  I was also sure that this kid was just here to ruin my life (selfish much?!), but boy was I wrong!  Yes, having a child with special needs is hard and sometimes very isolating but Si has been the biggest blessing in disguise!  He has taught me so much in his short little life and has completely changed how I view people with disabilities.  He is his own person who has totally exceeded many of my initial expectations and made me realize that special needs children are people too.  They are people that have hearts, and feelings, and personalities.  I'm so thankful that he has opened my eyes and my heart and I'm proud to be his momma.  


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Allison:  Oh my, do I just have to pick one?!  There are so many lessons that I've learned since becoming a special needs mom.  I would say that the biggest lesson I've learned is that we are not in control and sometimes the plans we have for ourselves are not the plans that God has intended for our life.  It's been very hard to see many of the dreams I had for my child and my family slip away, but it's also been very amazing to see door after door open with new friendships and opportunities for our family.  This isn't how I imagined my life to be, but by ultimately trusting in Him, I know everything is going to be okay.


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Allison, thank you so much.  Silas is a cutie-pa-toutie!  So my favorite part about your spotlight was your raw honesty.  I think it is not an uncommon experience to feel like life as you know it is over when you first find out that your child has special needs. It can be so hard to wrap your mind around! And while life certainly does change, as you know it's not the doom and gloom you imagined.  Yes there are very really struggles and difficulties, but the love is very real as well.  I'm so glad you spoke your truth because that is what helps others come to see that having those thoughts doesn't make them a horrible person once they know and accept that, then perhaps they can begin to open their hearts and minds to more love and understanding.  Also, yes to being open to the life God has in store for us.... I mean really, who's life goes exactly as planned anyway?  Thanks again Allison and please give your cutie Si a squeeze from me.  

Sometimes I'm still amazed at how much I take in and learn from each spotlight. For me, these never get old and always feel like a I've cracked my brain and heart open just a little bit wider each time.  So please keep 'em coming!  If you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!  

Wednesday, March 25, 2015

How to keep Your Moccasins from Coming Untied



Or my most important post ever.

You guys know that I'm all about spreading awareness.  Well lets just open the awareness gates a little wider to include really important topics like "how to make sure your moccasins don't come untied, but if they do come untied I have found the best youtube video ever to help you learn how to retie them."  If you have moccasin slippers with leather laces chances are they've come untied, and to your everyday annoyance you've deduced that 1) moccasins aren't tied in the traditional manner of every other laced shoe known to mankind and 2) you have no idea how retie those mother freaking moccasin laces. I'm here to help.

As with most things in life prevention is the best course of action.  When you buy your moccasin slippers with those perfectly tied moccasin laces, the first thing you should do when you get home is take some fabric glue and glue underneath and around those knots.




So I actually didn't glue these right when I got home as I should have.  Then my precocious baby Zuzu got a hold of one mocc and undid the laces, which is actually a bit difficult so good job genius baby.  For a few weeks now I've been walking around with one perfectly tied moccasin, and one moccasin that I've been tying and re-tying in vain, knowing it's not right but not knowing how to fix it.  Until Monday when enough was enough.  I glued the good mocc laces in place and then spent a some time looking up every mocc tying tutorial on the internet.  This is the best video by far.  If you read the comments people are like OMG thank you man!  I was going crazy trying to figure this out! You're not alone friend, you're not alone.  I suggest watching the video, pausing and repeating as necessary.  I've also broken it down for you in pictures below:


1.  Left lace (which is also a little longer) under right.
2. With the new left lace make a loop and put the tail under.
3.  Take new right side and go over the top tucking underneath the loops.
4. Pull right side through leaving a little loop.
5 +6.  Take the end of that same loop and pull it around and through the loop you just made.
7.  Pull loop through.
8.  Tighten.


You really do need to watch the video, but the pictures should help too.


As I said before prevention is the best medicine, they're not perfect (my re-tied shoe is on the left) but so much better than before.  The ends of the laces are on the bottom, the top of my moccasins stay folded over, my annoyance levels return to normal and all is right with the world.  Whew!

Now it's time to go color code my socks and vacuum the silverware drawer.

Oh, and you're welcome.

Monday, March 23, 2015

Art + Motherhood



There are so many different reasons why I paint.

Zuzu has been driving me crazy lately.  Like cra-zee.

The thing about art--good art--is it's ability to transform something inside us, make us feel things we didn't feel just moments before.  For me it's often this strange mix of nostalgia and novelty, a pang in my heart that makes me feel I found the very thing I never knew I was looking for all along.  GK Chesterson said, We have all forgotten what we really are.  All that we call spirit, and art, and ecstacy only means that for one awful instant we remember that we forget. CS Lewis said, If we find ourselves with a desire that nothing in this world can satisfy, the most probably explanation is that we were made for another world.  So often I think that art takes us to the brink of this remembering of things we forget, this other.  At its best, art lifts us and can both stir and satiate, at least temporarily, these longings.



The thing about motherhood is that the joy comes in moments, as Elder Ballard once said.  (Perhaps you've read Glennon Melton's essay Don't Carpe Deim about motherhood and how we can't enjoy it all the time...but the moments, we can enjoy those.  I'm not trying to rewrite that essay here, but you should read it.  Its good.)  Back to what I was saying, joy in parenting is in the moments.  This feels especially applicable to me with Zuzu right now.  When you take the total innocence coupled with the unbridled curiosity of a 15 month old baby you get a constant flow of disasters on the brink, disasters actually occurring and disasters just completed.  I am in a constant state of motion trying to keep up with the most adorable hurricane this side of the Mississippi.  Yet as you may have guessed, or well know from experience, living life in constant motion is exhausting.



Its amazing and sometimes almost odd that even the smallest artistic endeavors can leave me feeling more elevated than regular life. For example childrens books can feel unnervingly magical.  Even though I'm reading about bedtime, baths, busy spiders and hungry caterpillars. Suddenly all those things feel special.  Not ordinary.  Sometimes I want to jump in the book and be in that moment, and I'm like what is going on?  Why is this version of life so charming?  There are even these tricky children's books that make disobedient children who destroy homes and sanity for everyone in the homes feel magical and delightful. How do they do that?  Art.  Illustrations, words and humor all mixed together make us see and feel the world around us differently. This is nothing new.  How many  people have ever read Romeo + Juliet thinking, Why can't I find my suicide pact soul mate?  Sigh. Of course taken to extremes this can be problematic, but in the day to day drudgery of life this other, this feeling of being alive can be a rainstorm on our parched, desert souls.



And so when I was looking at my instagram feed last week, at the beautiful pictures of my beautiful offspring I was surprised to think, these pictures feel more beautiful then the real moment did.  And so is it fake?  Is my instagram feed and/or blog perpetuating a myth about my life and how idyllic it is or isn't?  No. The problem is that we often base reality on how we feel, but sometimes our feelings are not reflective of reality at all. The reality of these amazing, beautiful creatures I call my children who have beating hearts and thinking minds, who I somehow helped bring into existence and who in turn brought the mother in me into existence is a miracle!  They are walking, breathing, living miracles.  Their very existence is poetry in motion.  They are the riches of my life.  But the miracle and beauty of my children is so often overshadowed by fatigue, the routine of dishes and laundry and the slow tick-tock of the clock.  The fact that I can look at a picture of a moment from earlier in the day, week or month and see and feel things that I wasn't able to see and feel in the moment is just one more testament to the power of art.

This is why I paint, this is why I take pictures and this is why I write:

To remember that I forget.