Dear Doctor,

Too many times, at a prenatal diagnosis of SB, a new mother and father hear words that terrify them. Sometimes doctors paint such a horrible picture that parents forget there’s even a baby in there at all. I asked a few parents what they wished their doctors would have told them about their babies on that life altering day. Here are the responses.

“This isn’t really what I wish they would have told me, because my doctors were very supportive, but this is just a comment I have in general about the whole situation. We were obviously, like many others, given the opportunity to terminate our pregnancy. That obviously was not a choice for us. But I wish I would have known during that crazy time, that when I held my daughter for the first time (3 days after birth) that my world would completely stop at that moment, and my life would never be the same-regardless of her condition, which to this day I refuse to call a defect. She is not defected. She is perfect in her own way.”

“I wish they told me all the positives rather than just all the negatives. Not once did the doctors say anything positive to me.”

“That she was going to be healthy. Just because she was born with spina bifida didn’t mean she wasn’t born with GREAT vitals. I think some moms think that their babies are not going to be born healthy, which really isn’t the case.”

“I wish they would have gotten over the diagnosis and remembered that my child is a unique individual that just so happens to have spina bifida. SB never has, and never will, rule our lives. It is just PART of it.”

“I wish they had not treated us as if we were idiots because we refused a termination.”

“What a loving child he was going to be. How smart he would be, with a great personality.”

“I wish they would have told me how NORMAL he would be. How amazingly smart and funny! How it doesn’t matter that his legs don’t work like everyone else’s. I wish they wouldn’t have painted such an ugly picture of spina bifida. Like how I was doing an inservice to my child by not having an abortion, and telling me he would have no quality of life. He has quality of life!”

“One thing I wish they would have at least mentioned is that I was still having a beautiful baby. The doctors are so focused on the diagnosis, it makes you feel like you are having a science experiment or something, and not that you are still going to have a beautiful, wonderful, cute little baby. All the things they tell you make you forget that.”

“I wish they had told me that he would go to school and make friends, and come home and tell me about his day at school at age 3. Strader is not a diagnosis. He is a very smart 3 year old who impresses his teachers daily. They told me the other day that he is more advanced than most of their 3 year olds, and I simply said, “Yes…and your point is?” I just thought to myself, I know my kid is smart. I know he can’t walk, but he is really smart! That is what I would have liked to have been told, is how smart and witty he would be.”

“I wish they would have told me about her smile. How she can make a room light up. How strong she is, no matter what. How compassionate she is!”

“I wish they would have told me that when I look at her, I wouldn’t even see her disability, just the amazing little person she is!”

“I wish they wouldn’t have made it sound like the end of the world. They gave THE worst scenario ONLY, and kept using the statement ‘poor quality of life.” I wish they could have told me he would be as sweet, loveable, and feisty as his twin. The only true difference is one of my boys has sweet little wheels to get around. They are both such blessings.”

“As a grandmother who went to doctor appointments, I agree with everything said. I could remember only one nurse out of the doctors and nurses who actually treated my daughter normal, and was cheerful about her having her baby. They seem to take away the joy of having a beautiful baby just because of a disability. Each baby is precious!”

“I wish they would have skipped the evil genetic counselor who repeatedly kept pushing termination, even after we asked her to stop contacting us. I wish the EGC had not told us it would be irresponsible to have more children. We’ve since had 2 additional children, neither having SB. I wish they would have introduced us to a spina bifida clinic, so we could talk to the doctors who really know what life is like, instead of just the textbook-worst case scenario-gloom and doom docs. I wish we had been introduced to other families with kiddos who had SB, so we would be encouraged by their beautiful smiles and family dynamics. I wish the neurosurgeon hadn’t told us institutionalization was a good option. But what I really wish is that they could see us now. P.S The EGC came by my hospital room after delivery and gave me a cactus. I let it die.” <—You know that’s funny. Laugh.

“I wish they would have had the humility to admit that doctors do not know everything, and we are learning new things every day about the human body. My son is my biggest joy in life. He is perfect despite his imperfections. Having the ability to walk will not add or take away any value from him as a human being. He is love, and joy, and hope, and determination, and inspiration, and he will inspire and amaze the world (says his mom).” <—Moms are right a lot. Just saying.

“I wish I would have been told that my daughter would be beautiful; that she’d be smart and silly; that she would light up an entire room with her smile; that people would look at her and not know she has a disability; that she would be so strong and nothing would keep her from getting into anything she wanted to; that she is not a tragedy!”

“I wish someone had told us his head wouldn’t actually look like a lemon. Had I been able to picture a regular looking baby, rather than a fruit salad, I might have had an easier pregnancy. That, and the fact that he is the MOST charming kid I have ever met!”

“I wish the Dr’s could have told me that this fragile looking baby with wires all over…would one day be sporting cheerios stuck to his face and handfuls of dirt going to the mouth! I wish they could of told me about birthday candles being blown out, happy shrills at Christmas, and throwing leaves in the fall. I wish they could have told me how he would bring us his ball over and over again trying to learn the concept his self, and how cute it would be when he flicks the wheels on his toy cars with his little thumb! I wish they could have told me about how when he falls asleep he needs to rub his treasured favorite blanket with his chubby little hand, and tickle the inside of his ear with the tags! I wish they could have told me how he would love his sisters one minute, and demand independence the next and how he would learn right and wrong like any other kid. I wish they could have told me how he would stand on his little knees and look out the window yelling “Da!” (Dad) waiting for Daddy to come home and how he would belly laugh hysterically all over a game of peek-a-boo (every single time!)! I wish they could have told me how his mere happiness and zest for life despite a few challenges would bring others so much joy and help them to count there own blessings. I wish they could have told me all of this but instead I heard about tests, scans, surgeries, as if he wasn’t real. I wish they could have told me these things but they didn’t. But it was okay…I knew it the moment I looked into his eyes :).”

Now it’s my turn. I wish my parents had been told how thankful I’d be that they gave me a chance; how I’d love life, all of it, and embrace every day given to me because I know they had another choice. I wish they had been told that there was a plan for my life, for my disability, for my being born specifically to them. I wish they had been given some hope for my future. I hope this blog spreads some for the next generation.

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“I don’t know how you do it!”

The title of this post is a phrase that I understand comes up a lot in the SB community, usually pointed toward a parent raising a SB child. Before recently, I have to admit that I may have let those words slip through my lips as well. In fact, I may have even blogged about it. A recent event in my life has changed my view though. For those who don’t know, on June 28th of this year, my mother had a sudden, very unexpected massive heart attack. That first day, we were told not to expect her to live through the day. Those words just about killed me. I’m not exaggerating at all. I thought I was dying. Literally. I did not think I could continue to breathe if my mom wasn’t going to, and honestly, I didn’t want to. She did survive that first day though, and several days after; 73 days to be exact. In that time, I heard several different variations of the phrase, “I don’t know how you do it!” There was, “I don’t know how you’re still standing!” And, “You are SO strong!” And, “I wouldn’t be able to do what you’re doing!”

The truth is though, you could. If you had to, if there was no other alternative, you would. After 73 days, I’m not sure I can tell you “how” I did it outside of the fact that God carried me through every moment of every day. But the “how” is not as important to me as my new understanding of the “why.”

“Why do you do it?”

I think I’ve come to a whole new understanding of what its like to take care of someone with special needs. During those 73 days, my mother as I knew her, was taken from me, much like I assume a pregnant mother and father’s dreams are dashed with the diagnosis of SB. On June 27th, my mother was independent, fierce, in control, my helper, my friend…my rock (a place or two after God). On June 28th, she was dependent on her family and her nurses for everything. I had to make medical decisions I couldn’t know the consequences of, and she couldn’t either since she was unresponsive and sedated. I had to give my mother over to doctors and trust that they knew what they were doing. I had to hold my step dad’s hand while he signed papers to allow medical treatment that we couldn’t be sure she would be happy with when she woke up…if she woke up. I think that must be a lot like handing your child over to some doctor for surgery. You’ve done all the research you can do in the time allotted, but when the time comes, all you have is your trust in God and in the doctor’s experience. You have to trust that the doctor has led you toward the right, sometimes life saving, procedure. Tough stuff. Stuff you never saw yourself doing. I sure didn’t anyway.

My mom was always the leader of my family; the decision maker. I didn’t really do a whole lot without at least asking her opinion, so to make these kinds of decisions for her was nearly impossible. I spent most of my time in a daze, on autopilot, nodding my head when it looked like I should and protesting when I felt it was appropriate. Eventually, I just learned to do what I had to do.

Why did I do it though? I think I can safely say I did it for the same reasons that parents of SB children do what you do; because you love your children even more than yourself, and there isn’t a logical alternative. Because you can’t do anything else. Because the alternative is to bury your head in the sand. Because you would not be any other place on the planet when your baby is hurting. Because your soul cannot do anything different.

When I was doing all the things I knew to do to take care of my mom, I never even thought about “how” I was going to do it. Most mornings (and most nights) I told God that I couldn’t, so He had to. He did. He woke me up every morning, got me showered and cleaned, put me in my car, drove me to the hospital, and got me back to that room (not literally, but it sure felt like it). I did it because I couldn’t do anything else. I couldn’t bury my head in the sand. I did not want to be anywhere else on the planet while my mother was hurting. My soul would not allow me to do anything else. I loved her. The pain, and fear, and pure hellishness (the place) of the situation were not big enough to keep me from doing what had to be done.

Like I said, I’m not sure I can explain to anyone how I did what I did and survived it all, but I think I understand more deeply now why SB parents do it. Because you wouldn’t be doing anything else in the world if you had the choice.

My mom is gone now, in Heaven with Jesus. Maybe she’s waiting on me, or maybe she’s too busy dancing with her momma to have even noticed I haven’t arrived. I’ll see her again someday. I’m glad I did what I did. It gave me more time to show her how much I love her. I would have taken her home and cared for her forever if that had been God’s plan, no questions asked. I was already working it out in my head. That wasn’t the plan, but I was ready for the same reasons SB parents do what you do. Its all pretty simple to me now.

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But Didn’t You Take Your Folic Acid?

The Spina Bifida Association of America and other organizations around the world work to help prevent neural tube defects in babies by researching causes and raising awareness. They’ve done amazing things to lower the number of cases of spina bifida. Fewer and fewer babies have to endure what I’ve endured in my lifetime. There is a problem though. The push for folic acid is a good one, but not a 100% fix-it cure. Women are told that as long as they take their folic acid, things will turn out perfect and baby will be fine. That isn’t always true, and with the folic acid campaign being so prevalent, outsiders tend to judge and look down upon parents whose children have SB without just cause. I posted a question on a forum I’m a part of, asking if I could borrow pictures of those children whose mothers were taking folic acid at the time they were conceived. The first 24 pictures are the responses I received in less than 12 hours…the rest were added by request from mothers who wanted their voices heard as well. I will continue to add until the requests stop coming.

In less than 12 hours, I got 24 pictures of children whose mothers took their folic acid and they fell between the cracks. I’m still receiving requests for add ons. There has to be another cause, and we need to find it. All of these women did everything they knew to do. That means there has to be another explanation, and we don’t know everything there is to know. I’ve heard far too many stories of even doctors assuming mothers didn’t take their folic acid because enough research isn’t being done to find other causes. These mothers aren’t to blame. We need to find out why some children fall through the cracks. There is another cause, and we owe it to these children to stop blaming their mothers and find it.

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Happy Father’s Day!

When a man finds out that he is going to be a father for the first time, I assume that certain images go through his head. Images of his son being the star quarterback for his high school, or his daughter being a head cheerleader…

But when he finds out that his child will be paralyzed, I assume all those images fly quickly out the window. Being a dad has become a whole different monster now. He trades his images of cheering on the sidelines for images of hospital visits and surgery. He gives up hope for Heisman trophies and baseball scholarships. This game is all new to him. Spina bifida is a fight that there won’t be a championship for. He has to learn to trade his touchdown champ for a computer technician…or maybe he doesn’t…

He has to trade images of a homerun batter for images of a librarian…or maybe he doesn’t…

Images of his child being the next Roger Federer fly right out the window, but maybe they don’t have to…

Being a father to a child with spina bifida is a whole new sport, one that most are not cut out for. It takes a man of great strength and courage.

Being Daddy to this little guy takes a whole other breed of man.

For those of you who have stepped up to the plate and been Daddy to these amazing children, I’ll be your cheerleader! You totally rock!

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Happy Mother’s Day (from a special needs perspective)

If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.

Mom,

Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!

Love,

Your SB kid

SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!

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Florida or bust!

Those of you who follow my facebook know that, last week, my husband and I took a trip to Florida. We went there (a 15 hour drive) to meet some members of the spina bifida family! I had spent since January anticipating those first hugs and counting the days, but in the weeks right before our trip I got nervous. I started doubting myself; started to question whether I could live up to the expectations of these amazing moms who I’ve become very close with. I started to question my sanity! Why was I going to drive for 15 hours to meet people I had never met, and what exactly did I plan to say when I got there? Who did I think I was that coming to Florida would change anything for these women or their babies? I was scared, and I felt like I wasn’t “big” enough to do this. It was totally crazy to drive that far and not have a plan! What was I doing??? Then, I started to remember all the times in my life when God only gave me part of the instructions. At one time, it was, “Move, I’ll show you where when you get there.” I got there, and through it, I learned to trust Him. At another time, it was, “Wait. If I told you how long, you wouldn’t wait.” I waited, I’m still waiting on some of it, and through it, I’m learning to trust Him. I’ve also heard him tell me, “Witness to the mothers I show you.” He showed me. I witnessed. I still do. If He had told me, in the process, I would lose my job and there would be MUCH more waiting than anticipated, I’m not sure I would have been so enthusiastic, but I witnessed, and through it, I’m teaching others to trust Him. So this time, I heard Him say, “Go. I have the plan, and you can see it when you get there.” What was there to do besides hop in the truck? I trust Him. So, off we went…

I’ll spare the details of the drive. It mostly consisted of long roads, trees, and unfamiliar bathrooms. Boring much? Yes please!

Fiiiiiiinnnnnnaaaaallllly…we arrived in our new friend’s driveway. I expected to have some time to compose myself, fix my hair, check for weird smells in odd places, all of that. Nope! Our new friend, her precious, sweet baby, and their two dogs met us in the driveway! It couldn’t have been more perfect! This family that I had prayed for continuously while staring at pictures on the internet was real, in the flesh, standing right in front of me. There weren’t words. I guess I had my answer to, “What will I say when I get there?” Nothing. Good enough! We went in, after surprisingly not awkward hugs and, “Hello’s.” Lysette (the amazing woman we stayed with) made us breakfast while I held her daughter. Lyla was perfect, so sweet! She babbled at her mom from my arms, and I couldn’t have been happier. Lysette, James and I sat on the couch and talked like we had been friends forever. I guess we have, really. I’ve known Lysette since before Lyla was born. I watched her go through the fear of the unknown, and I watched her bring this amazing, beautiful child into the world. I watched her cry, and laugh, and celebrate. I watched Lyla change her life…yeah, I guess we have been through some stuff!

I’m pretty sure we’ll be friends for a minute! Lysette, come see me! Your turn!

After a bit, James and I decided we had had enough of the awake thing and called it a night. The next morning was all for James (an aquarium trip), and we needed to rest up!

The aquarium was full of fun and excitement! We got to pet stingrays and starfish! Any time I can touch an animal, I’m all for it! I went back to the stingray exhibit 3 separate times. I’m sure everyone was sooo over it by the time they could peel me away!

Isn’t he cute? James wouldn’t let me put him in my purse…

After a long day at the aquarium, we went back home to rest for the next day. We had even more exciting plans for then…Fran and Madison were joining us at Downtown Disney! I woke up at 6:30 a.m. If you know me at all, you know NOTHING gets me out of bed before 9 a.m. outside of a bladder eruption! I was excited!

2 p.m. took forever to arrive. I had waited to meet Fran and Madison for what seemed like my whole life! We got lost somewhere between Lysette’s house and our destination, so we arrived at about 3 p.m. an hour late. (No worries, Lysette. I would have had us in the same situation or worse…probably worse. Definitely worse.)

After much driving and frustration, we made it! We saw Fran and Madison waiting at the entrance for us, and my half paralyzed legs wouldn’t get me there as fast as my heart wanted to run! See, Madison is really special to me. She’s adopted, and if I didn’t know better I’d think she was my biological child (I have no secrets, at least none of that variety). I’ve watched her grow up in pictures, and every one makes me ask myself, “Do I have relatives in Florida that I haven’t been made aware of?” My mother even looks at her pictures and tells me we could pass for twins.

Do you see it??? Twins. Excuse the bad hair day. It was HOT!

So, she’s precious to me. Watching her grow up is like getting a chance to watch myself grow up. I hope she lets me watch for a long time. I love her.

Our time together was much too short, due to some medical obligations. I need to see her again. Fran, come see me!

Then, on our last day there, a visit that I didn’t expect. Christina sent me a message saying she knew we were in Florida, and she’d like to bring Raven over to meet up! Um…me getting to hold a BRAND NEW baby??? YES! Unexpected pure joy! Raven is one of the newest to my extended family, at only two months old. We share an exact lesion site and a love for sleep! She layed peacefully in my arms for hours. I couldn’t get enough! She cooed and babbled at me, and I talked back. I think we each knew what the other was saying.

I signed her casts in hopes that someday her mother will show her pictures of the day I came.

 I hope she knows that even though we haven’t had much time with her or her mother, they have a special place in my heart that can never be moved.

So, what did I learn by listening to God this time, when He said, “Go. I have the plan,”? Lots. Once again, I learned to trust Him. I’m stubborn that way. I have to learn and relearn sometimes. But this time, I learned to trust Him not for me, but for them. Leaving was next to impossible. I wanted to stay for every hurdle and bump in the road. I wanted to be there for first steps, if there were any, and first wheels too, if that was His plan. I wanted to be there to tell them that things get better, that there won’t be as many doctors later, that the craziness is temporary. But I had to go home, where my family needs me…Back home to my dog/son, my parents, and my church…and I had to trust Him. I had to trust Him to be there for all the things I wanted to be there for. I had to trust Him to hold them when things were hard, or when something hurt, or when there was another surgery coming. Ouch. I do trust Him, but I do hope He asks for my help again very soon! I’ll hop in the truck! No hesitation!

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Handicapped? Nah. You can keep it!

The question was posed today on a forum I’m part of, whether those of us who are adults with SB consider ourselves “handicapped.” The words varied, but the answer was unanimously, “No.”

When I’m walking around Walmart, buying my groceries for the week, I don’t have a tape in my head saying, “I’m the handicapped woman, I’m the handicapped woman.” The tape in my head plays over my grocery list, and tries to remember whether James requested anything extra.

 When I wake up in the morning and stumble half asleep to the bathroom, I don’t see a handicapped person staring back at me from the mirror. I see that my hair is a mess, and I need to wash the nighttime off my face, and judging from the look on the woman in the mirror’s face, I really need to use the bathroom!

 I don’t really pay a whole lot of attention to what makes me different from you until you point it out with your eyes, or the way you approach me…or the way you don’t. I’m not trying to bash anyone. I’m guilty of the exact same thing, more than once. When I see a person who doesn’t fit society’s mold for “normal,” I look too, and sometimes I find it hard to ask questions because I feel like I’m being nosy. I’m working on that.

But those who know me know that I’m more “normal” than not, and I’m not all that interesting to stare at, and I’m pretty willing to answer any questions you might have. Those who know me have pretty much stopped asking questions, because I will tell you everything you DIDN’T want to know! Those who know me, know that as long as you watch, I don’t do many tricks (I save my Superwoman moments for when you blink! See, you missed it)! Most of the people I know think I’m funny, and sweet, and have my own sense of what’s acceptable to say out loud…. I don’t think they see me as the “handicapped woman” either. They see the parts of me that are like you…the crazy part, the part that likes to dance, the part that sings every song on the radio whether I know the words or not, the part that can’t do math, the part that craves ice cream and pizza. I’m normal. I’m the same as you, only my hair is dirty blond where yours may not be, and my eyes are hazel. I am a person way before I am handicapped. I love football and nachos, together preferably. I have a favorite band, and I scream their songs at the top of my lungs on the freeway!

I’m not handicapped. I’m Misty, nice to meet you! That’s the only label I’m going to wear.

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Hands and Feet

It is said that as Christians we are called to be the hands and feet of Christ during our lifetimes. I used to have a running joke about how my hands were great, and perfect for God’s work, but my feet…not so much. As I grow, and start to learn what my journey on this side is all about, I’m gaining a new perspective. Maybe, all along, I’ve been trying to use my feet in ways God never intended them to be used. Can I be a productive part of the set up/tear down team at my church? Probably not. Can I assist in lifting heavy objects? No. Can I run a marathon? Nope. Can I run at all? Nah. So, my feet are pretty useless, right? NO!

I’ve been taking a new look at these appendages on the ends of my legs lately. They don’t exactly help out much, and sometimes, they’re downright irritating. They don’t really do anything except get in the way, and make me trip sometimes. But, what if somewhere in the world, there’s a six year old boy whose feet don’t work. What if he can’t run? What if, sometimes, he looks at his feet and they irritate him because they get in the way? What if I got the chance to tell him, “My feet don’t work either!” What if he didn’t feel so “weird” after that? What if I could change the way he looks at his feet by showing him mine? Then, my feet would be perfect. They could be used to instill confidence where there wasn’t any. What if this was what I was supposed to be doing with my feet all along? Maybe this is what they’re built for. I think they’re meant for that purpose.

These feet that get in my way, that flop around when I’m trying to walk, that don’t do what I ask them to because I don’t have any idea how to ask…are they useless? Absolutely not. These feet that ignore my requests are the feet that God chose to use for His purposes, and they apparently listen to Him! They are the “feet” part of “hands and feet of Christ,” and they are pretty incredible! So, they don’t move, but I’ve seen them move mountains of doubt and fear out of the way. Because my feet don’t work, God uses them to bring hope and faith to people I’ve never met, and who have never seen my feet at all. They are tiny, and have no muscles at all, and they’re amazing!

If you think God can’t use you because you don’t see your worth, think of my feet. Absolutely cool, worthless little things, aren’t they? If God can use my feet, He can most certainly use you!

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A Veteran SBer’s Perspective on the MOMS

If you’re part of the SB community at all, you’ve heard the buzz going around that the MOM Study has concluded! For those of you who don’t spend your days carting little ones to physical therapy and worrying about shunt malfunction, allow me to shed a little light. The Management of Myelomeningocele Study (MOMS) has been a highly controversial study looking at whether intrauterine surgery produces a better outcome than postnatal surgery for those of us born with spina bifida. Well, the results are in, and things look really great for the most part! The intrauterine study seems to show a decreased need for a shunt and less neurological damage for about half of the babies. This seems to be more hope than we’ve ever had in the past! There are still risks that have to be weighed by each individual mom and dad, but over time, I think this will change the face of SB forever.

When I first heard the news yesterday, I got extremely excited and texted my best friend joking about how the medical community had just rendered my blog irrelevant! LOL! I was bubbling with excitement and expectation for the next generation of little “Me’s”. It was an awesome moment!

Then, if I’m being gut level honest, there was about twenty minutes where I realized I had missed the mark by just a few years. I was born in 1983, and the study began in the early ’90’s. I started to feel bad for myself, and started wondering about all the what if’s. Could I be “normal”? Would I still have to use AFO’s and all the other medical equipment I deal with everyday? The study says that in some cases, functional levels are four vertebra lower than actual lesion level. I, being a L5, could have been nearly unaffected by SB. I would have been just about totally functional. Maybe a pinky toe would have been an argumentative wiggler, but that would have been about it. There was definitely a pity party moment.

Then I started to think about all these babies I loved so much. I missed it by a few years. They missed it by mere minutes! Ouch. This cut me deeper than my own “miss”. The study was late for “my” babies. I’ve heard that when you’re a parent, you always want your children to have more than you did. I think I understand now. I want them to run circles around me. I want them to experience less physical therapy and see fewer Batman figures on the ceilings of OR waiting rooms. I just want them to have it easier. This round of feelings was a really rough one for me.

This morning though, I started thinking all over again about my what if’s, and I came to a much different conclusion. What if the diagnosis of SB had meant almost nothing for me? Who would I be without thirteen surgeries and no catheters, without AFO’s to put on in the morning, without the shunt in my brain? This could have changed nearly everything in my entire life! Would I have had the same friends I did, or would I be a little more superficial and pick the “in crowd” to hang with instead of giving everyone an equal chance? Would I still have understood from such a young age that every day I have is to be treasured? Maybe not. Would I have dated in the same circles I did, or would I go for that football player instead? Would I have James? I don’t know. Would I have met, “Smush,” or “Geli,” or “Maddi?” I don’t think so. Would I have known that there are certain things in life that no one can fix for me but God? Would I have come to the point of collapse and surrendered to Him? I’m not sure. He probably would have found another way to get me there, but I’m not sure how. Thing is, I love the journey that SB has brought me to. There are days when I don’t want to make friends with the SB itself, but what I’ve gotten in exchange is priceless.

So, for those mothers and fathers who are debating having the surgery, my personal vote for you is, if you qualify, if its right for you, “Do it!” I think it will change the future for your children, and I want it for them. But to the medical community who was just a little late for me (I’m not bashing you. I love you!)…I’ll keep my AFO’s, and my catheters, and my UTI’s, and my thirteen surgeries, and my shunt, and my family, and my friends, and my little tiny apartment, and my dog, and my babies, and my James, and my journey, and my God who loves me more than I could ever comprehend, and you can keep your what if’s. I don’t need ’em!

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Save Baby Shea!

I’ve been following the progress of a little boy for several months now. In that time, I have to admit I’ve fallen more than a little bit in love with him. His name is Shea. He is four years old and lives in an orphanage in the Ukraine. There is a family here in the U.S. in the process of adopting him and giving him a forever home, with a mommy and daddy, and plenty of brothers and sisters. The story has had its ups and downs, but generally, its been uplifting to watch the process happen. Unfortunately now, we (watchers and prayer warriors over this family) have run into an emergency. Shea has been scheduled to be moved from the orphanage to a mental institution because of his age, and because donations toward his adoption have not covered the cost. If this happens, his new mommy and daddy will have a MUCH harder time bringing home their little boy. I don’t understand all the fine details, but I know that the mental institution fights harder against adoption than the orphanage. If Shea is moved to the mental institution, he will no longer receive the medical care that he needs. He will be bed ridden and receive almost no care at all. THIS CANNOT HAPPEN!!!!

I’ve been thinking about Shea since yesterday when I learned of his new situation. I’ve been thinking how different his childhood is compared to mine. I always had a family. There was always someone around to take care of my medical needs or teach me to do it myself. There was always someone I could run to when I fell and scraped my knee. Always kisses for hurts, advice about boys, celebrations for my milestones, someone to correct my wrongs. If Shea is taken away from his new family, he won’t have any of this. Up to this point, he hasn’t known any of it. He deserves to go home. I read his mother’s blog regularly, and she loves him. They belong together, and you can see it in her words. I know that she and daddy will be there for him when he goes daredevil and scrapes an elbow. They will make sure he has plenty to eat. They will take him to the doctor, and kiss him after the needles and tests. They’ll go have ice cream on especially tough days. He needs to be with them. Shea can be someone if his spirit is nurtured! The only things in the way are money and time. Shea is scheduled to be moved to the institution in a few weeks. We are running out of time.

Meet Shea here! http://reecesrainbow.org/shea-9

And meet his mommy here!http://thekulpchronicles.blogspot.com/

Please pray for this little boy. It will mean the difference between having a productive upbringing in a happy home, and being left in a bed for the rest of his life with no one to love him. We can make a difference. My bible says that when two or more are gathered in His name, He will hear! Let’s shake Heaven today for Shea!

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