Monday, October 31, 2016

Faces of Spina Bifida: Meet Owen, Olivia, Jemma, and Jordan

Owen
(right)

Ten years ago today we went in for my first ultrasound. Since it was Halloween, everyone in the doctor's office was dressed up. The ultrasound tech told us we were having a boy! We had a 2 year old boy and 16 month old girl at home, and now we were having another boy! We were thrilled! Then the tech said she needed to show the doctor the scan. We didn't suspect anything was wrong.

When my doctor came in she was dressed in a robe and curlers. She put her hand on my knee and gently said, "I see a couple of things on the ultrasound I'm concerned about." I took a deep breath. "It looks like your little boy has a cleft lip and palate." Okay, we can handle that I thought. "I also see fluid around his brain and a sac containing spinal nerves protruding from his spine. He has hydrocephalus and Spina Bifida. With the presence of multiple birth defects we're probably looking at a chromosomal abnormality. It may be fatal. I'm so sorry."

The world stopped. My tears flowed. Our world had been turned upside down in an instant. All our hopes and dreams for our son had changed, just like that. The questions swirled in my head. What would this mean for our son? My doctor was pretty confident in the diagnosis, but wanted us to see a specialist ASAP to confirm. She used lots of big words. It was completely overwhelming.

The thing I remember most clearly from that day, and still marvel at all these years later, is the overwhelming flood of peace that came over me as I lay on that exam table. This was most certainly God’s grace. I would have expected a diagnosis like this to feel devastating—it was no picnic, don’t get me wrong. But God gave me an unmistakable peace in that even if our worst fears were realized and Owen would not survive birth God was still in control. It was the most clear experience I’d ever had of the peace that transcends all understanding in Philippians 4:7. Our world was certainly rocked, but our faith was sure. We named our son Owen Mark right there in the ultrasound room. It means "Mighty Warrior," and that's just what he turned out to be.

Forty-eight long hours later we were sitting in the Perinatologist’s office waiting for the results of a level two ultrasound. The specialist was not as compassionate as my OBGYN had been. He flatly stated that he’d give our son a 50/50 chance that he’d survive birth. He gave a grim prediction of what our Owen’s life would be like if he survived. “He will never walk. He will never be normal. He will have no quality of life whatsoever. He will likely be a vegetable.”

Thankfully we familiar enough about these birth defects to know that NEVER was a pretty strong word to be using so early in the game. Both Spina Bifida and clefts are present in our extended family. We believed that though this doctor’s predictions may be right, there was plenty of room for God to work a miracle. God is the only one who knows the future. We held on to that Hope with all our might as we faced whatever lay ahead.

The specialist began to explain how we might “terminate” the pregnancy. I cut him off. This was our son. He was fearfully and wonderfully made by His creator. Each day of Owen’s life was ordained before one of them came to be. We loved him no matter what.

Since both conditions were present in our family, I asked the doctor if it was possible Owen just happened to get both at the same time. He replied, “I suppose you can get hit by a bus and shot in the back of the head at the same time, but it is pretty unlikely.” The nerve. In my dreams I often would go back to this moment and stand up and slap him across the face. Instead I snapped back, “Well, I think that’s exactly what happened.”

We chose to have an amniocentesis to know if we needed to plan to deliver a baby with specific medical needs or prepare to say goodbye to our son. Sure enough his chromosomes came back perfect. God is so good. And He still would have been good if the outcome were different.

If only I knew then what I know now? I would have understood, like my friend Carrie said in her post a few weeks ago, that the events of this day ten years ago would only be a bump in the road of our journey.

Owen is 9 ½ now. He has had 30 surgeries, with more on the horizon. He walks independently with AFO’s, caths 4 times each day and does a bowel program every other day. His Spina Bifida is just part of his life. It does not define who he is. I can say with confidence that God has used the challenges Spina Bifida has brought into his life to grow Owen’s determination, persistence & creativity. He always finds a way to do what he wants to do. In the last few years, Spina Bifida has actually been in the background as we’ve encountered new “bumps in the road”—with the diagnosis of PTSD and Autism.

Owen is a super creative Lego and Minecraft builder. He loves the Ninja Turtles and playing on the iPad. He likes playing with his brothers and sisters (he’s the middle of our five kids.) We always joke that he has the best handwriting in our entire family. He’s crazy good at remembering obscure facts and is a great cuddler. He is a concrete thinker, and as such his biggest frustration in life is that he is shorter than his younger brother. “If you are older you are supposed to be taller.” No examples to the contrary will sway him in this conviction.

I asked Owen what he would tell someone who didn’t know about Spina Bifida what it was like to be a kid with SB. This is what he said: “Kids with Spina Bifida have shunts and wear braces. Kids with Spina Bifida can do anything they want… except running fast. We go to the doctor a lot. Some cool things I got to do are go to the Indy 500 and be in a commercial for Riley. He agrees with Toby that the worst part is that the operating room stinks. “I don't like the mask. It stinks even without the scents they put on it.”

I love this kid to the moon and back again. I am privileged to be his mom.



Olivia

She's 6 years old and amazing. She's in first grade and has an entourage of kids that hang around her. She loves dolls, playing hide and seek and tag. She's not able to wall at all but that doesn't keep her in one place. She's everywhere all the time. She doesn't mind being the girl in the wheelchair because everyone has something different about them and this is her awesome!


Jemma

5 year old Jemma Grace Donahue, born on January 17, 2011 as baby B. She weighed 4lbs 15ozs. Due to being under 5lbs she had to go to the NICU where the noticed a skin tag on her lower back. They ran scans and ultimately found she had SB. We had many check ups with her specialists and not had any problems with it. She does have a raised bump on her lower back that we keep a eye on. She's a very active tomboy and dreams of being a firefighter. She adores the ninja turtles, and everything boy. She has an identical twin sister who is the polar opposite to her.



Jordan


Jordan Lee is an amazing young lady! She's got a great and quirky sense of humor and she loves sports, especially the Texas Rangers and Dallas Mavericks. She is 17 and a senior at Lamar High school in Arlington where she participates as a para athlete with the track and field team. She won gold in all of her events at the UIL state track meet this year. She's also a member of the National Honor Society, HOSA, French Club, and Science Honor Society. She will graduate in the top 5% of her class this year! She plans to attend UTA or the University of Illinois so she can play wheelchair basketball and study neuroscience. She loves wheelchair basketball and has been playing for the Dallas Junior Wheelchair Mavericks since she was 9. Her goal is to make the 2020 USA women's team and go to Tokyo for the Paralympics. In her spare time she loves playing with her lab Landry, reading and watching sports. She is strong willed and stubborn and doesn't let much get in her way. She doesn't like being called an inspiration but she's a great example of what a person with Spina Bifida can do and become. Everyone is different and everyone deserves a chance to succeed and show what they can do. We were told to abort her at 18 weeks. Look what the world would have missed out on. She's loved by many and prefers to focus on her abilities rather than her disabilities.

Sunday, October 30, 2016

Faces of Spina Bifida: Meet Joseph, Ethan, and Lane


Joseph

Joseph has myelomeningocele, hydrocephalus, and Chiari Malformation. He and his wonderful sister came to live with us in January of 2015, when he was almost 2 years old. We were told he would probably never walk, but within a couple of months of moving in with us, and using his walker, he was off and running. Literally. He loves ninja turtles, fire trucks, and baseball. He is brave, smart, hilarious, and dramatic. His life is precious, and is one of the greatest gifts we've received. We might have to do a bunch of things differently than other people do, but we still have fun, and accomplish what we set out to. There are so many things that we took for granted before getting to have Joseph; I'm so grateful to him for opening our eyes to a more purposeful way of living. He is our miracle, and I think everyone that meets him feels a little of his joy.

Ethan


In Ethan's words: SB is not always easy to deal with but you get right back up and keep going. I never want anyone to feel sorry for me...I have a great life.



Lane

He is 6 and loves helping coach softball and hunting with his dad. Lane wanted to be Santa for Halloween!


Saturday, October 29, 2016

Faces of Spina Bifida: Meet Riley


Riley

You know how God puts certain people in your life at just the right time for a very special purpose? Well we became friends with Glenn and Cassie McLelland at church years before we had children. Then came along the time that we both started our families, and both Cassie and I got pregnant. I still remember what I was doing and where I was the moment I heard Caleb was diagnosed with Spina Bifida. To make a long story short, our daughter Riley was born 2 months before Caleb. Her Spina Bifida came as a surprise, as she was undiagnosed prior to birth. Glenn and Cassie having been preparing for Caleb’s birth, were full of information. They came to the hospital and filled us in on everything they had learned about Spina Bifida since Caleb’s diagnosis. We will always be beyond grateful for having them in our lives during such a traumatic time. If we’ve never said thank you before…here it is! Thank you Lord for putting such an amazing family in our lives when we most needed it!!!

On to beautiful Riley! This amazing little 11 year old is shy, sweet, and described as having an old soul! She is so very kind and compassionate, always putting others before herself. This girl is STRONG y’all! She doesn’t let stuff get to her and doesn’t allow others to pressure her to change, (we could all learn a thing or two about this, right?!). Riley is wise beyond her years and takes SB in stride, dealing with each difficulty with unlimited strength. Riley enjoys art, fashion, cooking and music. She thrives off of one-on-one time with just about anyone and loves deep conversation. She loves researching her Korean ancestry and visiting with family (who live all over the country). Riley has little fear of trying new things like snow skiing (big shout out to Crested Butte Adaptive Sports), and loves enjoying motosports with her dad and two little brothers, Luke and Owen. Her newest adventure she is about to embark on is horse back riding lessons. This kid is truly one-of-a-kind. We know there are HUGE plans for Riley’s life and it is by the Grace of God that we were trusted to be a part of it! Riley, we love you more than you will ever know!

Friday, October 28, 2016

Faces of Spina Bifida: Meet Bill

 Bill

I'm at 44 year Spina Bifida Champion. I am blessed to have my mobility, so I walk about mile and a half or so a day! I also love listening to 80s music, watching baseball, and helping out with my church team group.

Thursday, October 27, 2016

Faces of Spina Bifida: Meet Cannon

Cannon

I have been asked to introduce you to my grandson, Cannon. Usually, when I meet someone new or come across an old acquaintance and they ask me about him--I share a video with them. It was professionally done by their local television station when Cannon was a Hendrick Children's Hospital Miracle Kid 2014. It shows his story and shows a mother's love. Click on the link and his video is the third one down. www.ehendrick.org/CMNH/miraclekids.aspx

He seems so little; that was just two years ago. He is growing long fast. He is approaching his 8th birthday and in the second grade. He is an Astros and Rangers fan. Baseball seems to be his favorite. Not much into the Cowboys and Texans, but he loves his Clyde Bulldogs on a Friday night. He likes his Netflix, YouTube, some TV and a few games on his tablet. We traveled through four states with he and his sister this summer and I can't remember how many times we had to explain "you have to have wifi". That said - he would much rather be outside doing something sports related. If he is having trouble participating, he expects you to play, perform, and keep the game going anyway. We traveled to see him play Challenger Division last spring and got rained out. Before the day was over he convinced me to go check the field to see if they were telling the truth. He convinced me to break into the field and we played our own game with an invisible bat, balls and imaginary fielders. During the summer months he would live in the water if he could.

He likes country music and hopes to play his guitar one day. His favorite artist is Aaron Watson, has "played fiddle" on stage in a couple of AW's concerts and jammed with him one on one.

As his mom, Ali, said in the video - he has always been good with his speech and language. We wonder what is going on in his brain and he amazes us with some of the things that comes out of his mouth As he gets older, sometimes it gets him in trouble. He has inherited Grandad's quick wit and sarcasm. He has a tender heart, is sympathetic beyond his years and communicates it well. He has an infectious smile and a belly laugh that will bring you to tears.

As he continues to grow and I continue to age, I know the day is coming when I won't be able to carry him. I am not ready for that to happen. It looks like we need to make that hike to the top of OLD BALDY at Garner State Park a priority next summer.

I love you Cannon. I love the way you say "luvugrandad". Don't tell your sister and your cousins that you have my heart. --Grandad


Wednesday, October 26, 2016

Faces of Spina Bifida: Meet Misty

Misty

I'm Misty. I'm 33 years old, and was born with Spina Bifida. My parents didn't know about my birth defect before I was born, but the doctor told them he was sorry, and that he could have "done something about this," had he known. My dad thought he meant, "do something," as in, "fix it." Dad found out quickly that he had misunderstood. The doctor wasn't talking about fixing me. He was talking about getting rid of the problem...getting rid of me. Mom was still in another hospital, recovering from giving birth, but Dad was given a big, long list of reasons why I should be peacefully allowed to "go." Stuff like paralysis was mentioned. Mental retardation. A long list of "she'll never's." Mostly, it was a quality of life issue. There would be no "quality" to my life. My life wasn't worth living.

Here's the thing. Quality of life can't be measured in textbook statistics. There are no numbers for it. There are lots of stats if you look at just my SB. Lesion level-L5. Number of surgeries-15. Hospital admissions-hundreds (thousands?). ER visits- Only God has that number, but there's a number. Medical procedures-51,834,839,926. Probably. So, there are stats. And there's probably not much "quality" to be found in the numbers. But let's look at what I've done between the numbers...I learned to walk, talk, and eat, all things that were on the big list of "she'll never's." I went to school and played with friends. I had sleepovers, and birthday parties, and did all the things kids do. I had a first boyfriend. I broke up with that boyfriend. There was a trail of other boys too. I went to high school. I played flute and percussion in the band. I smoked pot once, and tried to hide the smell with a cough drop. It worked. Sorry, Mom. Dad, just skim that last part. I learned to drive, and speed, and got tickets. I graduated and went to college. I got married. I've traveled. I've danced. I've laughed. I've cried. I've lived. And I've known that every day I've been given is "extra," because my parents took a chance. You can't measure any of this stuff with numbers. Quality isn't measured in numbers. It's measured in moments. I've had some good ones.

Tuesday, October 25, 2016

Faces of Spina Bifida: Meet Nick


Nick

Age: 35

What I want people to know about me is simple! I have never, and will never let SB keep me down, I always get up when I get knocked down! I love my SB siblings and their families! Helping them is something I take very seriously and I'll be there whenever they need me! Having been to my lowest point in 2016, after the death of my father, I have known more pain than anything SB can throw at me! That's why I will continue to persevere because my Dad taught me to always keep fighting!


Monday, October 24, 2016

Faces of Spina Bifida: Meet Kate

Kate

Kate is 18 and a high school senior. She loves her special needs cheer team (The Cheer Connection Spirit), Food Network TV, and summer camp. She’s not sure what her plans are after graduation, but she thinks she would like to work with special needs kids in some way. She loves to try new things and even went snow skiing for the first time last year. (She was such a trooper, too! The temperature never got about 15 F!)

Spina Bifida does present challenges, but I have yet to meet a kid with SB who doesn’t rise above the ones that come their way. They are the strongest people I know.



Sunday, October 23, 2016

Faces of Spina Bifida: Meet Christine


Christine
with her service dog Luis

I am an adult that was born with Spina Bifida 46 yrs ago. I walk with braces and crutches just around the house mostly. I used to be very mobile outside the home but after back surgery in 2011 for tethered cord I lost confidence in walking due to some cord damage to the nerves.

I live at home with my parents by choice, some wonder why at the age of 46 would I still love at home? I say that my car and now Luis are my independence. I help around the home with lots of household chores.

I volunteer a couple times a month at our local hospital at the information desk as you walk into the hospital. I was a missionary with my parents from 2000-2008 in Budapest, Hungary. I worked at a Christian School as their librarian. Prior to moving to Hungary I worked in the airline industry taking reservations for TWA in their tour center. Did that for close to 9 yrs after high school. Since being back in the US I am now running my own travel business from home for the last 5 or so years.

I could share a lot more about activities that I have been involved in like being on a disabled rowing team while living in PA. I also learned how to snow ski.


Saturday, October 22, 2016

Faces of Spina Bifida: Meet Will


Will

Age: 38

Spina Bifida myelomeningocele

My journey of living with Spina Bifida started back in May of 1978. My father was stationed in South Vietnam serving in the Air Force. Like most, he was exposed to the chemical Agent Orange which was a herbicide that was used to combat the Vietnamese in “jungle warfare” when it was leaked into the local water supply. Because of his exposure to this chemical, I was born with Spina Bifida Myelomeningocele.

Just like anyone with Spina Bifida, this lead to many challenges in everyday life ranging from problems in school to very mundane things that a lot of “ambulatory” people take for granted. Luckily, not only did I have a very supportive family who never saw me as “handicapped”, but I was more mobile than most people born with my condition. My family has supported me in every endeavor that I chose, and most importantly, instilled in me that I can achieve anything that I put my mind to! It will just take more work and dedication than a “normal person”.

I am a product of the system, which is something that I now wear as a badge of honor. With the help of occupational and physical therapy throughout my education experience, I have graduated not only from high school, but from Elon University with a Bachelor of Arts in broadcast communications and a minor in film studies. I have also acquired an adaptive teaching licensure form Greensboro College.

For the past four years, I have been working as an employment specialist at Cape Fear Vocational Services. My main responsibility with the company is to go out in the community and establish business relationships. I have made long standing relationships with companies such as Longhorn Steakhouse, Food Lion, Cracker Barrel, and Walgreens. I am chairperson of the Spina Bifida Association of the Carolinas, but to also be a member of the SBA's Field and Relations Committee.

What I want people to not only know about myself and people with Spina Bifida is that Spina Bifida is NOT A DEATH SENTENCE. We are living longer and healthier lives and can achieve anything that any “normal person” can. With the assistance of technology and social media, our potential is endless.



Friday, October 21, 2016

Faces of Spina Bifida: Meet Quinn

Quinn


This is The Mighty Quinn - now just over two.

We found out at an appointment when I was 32 weeks pregnant that our baby had SB.

The unfortunate misinformation that is typically said with this diagnosis was said to us, we were even told it was best to abort our little one now because he would have no quality of life... 2 weeks later he was born - I am still in awe with this little guy and am blessed beyond anything I could possibly imagine and blessed that GOD chose us to be his family. He has two older sisters and one older brother and The Mighty is the apple of their eye. He has a presence about him that brings out more unconditional love in myself and in others, than I have ever seen.

My heart is overflowing!

Thursday, October 20, 2016

Faces of Spina Bifida: Meet Caroline


Caroline

This is Caroline Cassidy Hope Miller. She is 3 (almost 4 in December). She loves baby dolls and loves to play pretend. Most of the time she pretends to be Elsa from Frozen and always wants to wear her hair to the side. She loves the water so her ideal day would be spent at the pool or at the beach. She's so tough that most of the time she never complains about pain even when she's really sick. She usually always has a smile on her face and is the sweetest little girl I know. If she ever sees anyone crying (especially young kids) she will want to go over to them and tell them "everything is gonna be OK" and give them big hugs.

Wednesday, October 19, 2016

Faces of Spina Bifida: Meet Tanner

Tanner

Tanner is 7 years old and the oldest of my 2 sons. His level of lesion is L3. Tanner loves wheelchair basketball, adaptive surfing, and handcycling. He is super smart, one of the top students in 2nd grade at his school!

How does Tanner describe himself?
"I'm big T! Super strong and super awesome!"

What does Tanner love about himself?
"I like my wheelchair! Not many kids have one, and it helps me keep up with my friends. I love how smart I am and that I do a good job in school."

What makes Tanner awesome?"I am super strong, amazing, and kind. I can do what I want, it just might be in a different way. I'm awesome because I am, ME!"

What do you know now that you wish you had known when you first heard the SB diagnoses?
"As a parent, I wish I would have known how great Tanner would be. That having a child with "extras" and one that uses a wheelchair, is NOT the end of the world. That having a special needs child IS doable. That doctors DO NOT know everything. That I would have a great support group, and I would not be alone."


Tuesday, October 18, 2016

Faces of Spina Bifida: Meet Kinley


Kinley

Kinley is 5 years old and is attending pre-school. She loves to dance, ride horses, swim, and shop!

Kinley is such a happy little girl that doesn't let anything get in her way. She has taught our family so much about what's important in life. When I was pregnant and scared, I wish I had known how Spina Bifida would absolutely bless our lives and make me such a better person. We cannot imagine life without Kinley in it.


Monday, October 17, 2016

Faces of Spina Bifida: Meet Toby

Toby


Our son Toby is 9 years old. He is a vibrant, joyful boy with a feisty, persevering spirit. He has faced a lot of challenges including breathing, sleeping, swallowing, eating, seizures, and scoliosis. He has a trach, is ventilator dependent when he sleeps, and has rods called VEPTR in his back to keep it straight. In one month he'll have his 33rd surgery. However, none of this seems to slow him down. He loves playing sled hockey, wheelchair racing for Special Olympics, Miracle League Baseball, singing, playing the piano, Toby Mac, Legos, Star Wars, and everything else a 9-year old boy loves.

In one word I would describe him as Determined. He would describe himself as: awesome.


I wish I would have known then that this diagnosis was just a bump in the road of our journey, not a road block. I wish I wouldn't have had the fear. I wish I could have seen how our son would change my life for the better (and those around us) and allow our family to know God's grace and mercy in ways we would never have known if it wouldn't have been for him. I'm grateful for that!

Toby sees his strengths as having a good imagination and making people laugh by telling jokes. I see his strengths as having determination. Sometimes it's stubbornness, but as much as that gets him in to trouble, it allows him to overcome his setbacks too!

Toby also wants others to know about Spina Bifida that the Operating Room stinks - really, it's smelly and that's the thing he dreads the most when he's headed in for another surgery!


Sunday, October 16, 2016

Faces of Spina Bifida: Meet Logan


Logan


This is Logan! He turns 8 years old on October 17th! Logan was born with Spina Bifida: Myelomeningocele, Hydrocephalus and Chiari Malformation: Type 2. He has a VP Shunt and is a full time wheelchair user. Logan also has SPD (Sensory Processing Disorder), Cerebral Palsy and Scoliosis.

Logan is nonverbal and is unable to stand up or walk on his own, but he doesn't let that stop him! He is a champion army crawler. His nickname is Lolo or we call him our little Iron Man! He is one of the toughest and determined kids that we know. And he is pure joy! But very stubborn. We always say, he is allowed to be a bit extra stubborn! He is a very smart boy and he amazes us every day at what he does and learns! Logan is learning how to use PECS (Picture Exchange Communication System) in his Speech Therapy and in Physical Therapy they are working with him on crawling on his hands and knees, scooting himself around on his bottom and learning to pull himself up on things and his determination is paying off! We are so proud of this ray of sunshine in our lives and we can't wait to celebrate his birthday and look forward to all that he will learn and accomplish in the next years to come! Spina Bifida is his diagnosis, but Spina Bifida is not who Logan is!!! He is a beautiful gift given to us from God!





My blog: http://GrowingfromtheObstacles.wordpress.com

Saturday, October 15, 2016

Faces of Spina Bifida: Meet Aaron


Aaron

Aaron is 13 years old and has Spina Bifida! He has had 9 surgeries but that hasn't stopped him from leading and exciting life. He loves to camp and is active in his Boy Scout Troop. He also plays the Saxophone in his school band and is a blue belt in Tae Kwon Do. Animals have always been Aaron's favorite part of the outdoors. He loves working with his dogs and hunting with his dad.


Friday, October 14, 2016

Faces of Spina Bifida: Meet Kaden


 Kaden

He is 7 years old and he may have Spina Bifida but he loves life and loves people! For those that just found out your child is going to be born with Spina Bifida, know that it is going to be okay. God knows what He is doing not only for you but also for your child. They are worth every minute. Kaden is just like any other child, he just does things differently, we call it "Kaden's way". Same end result it just looks different. I wouldn't trade one minute of our journey together and I am looking forward to many many more adventures with my Spina Bifida Warrior!!!

Thursday, October 13, 2016

Faces of Spina Bifida: Meet Jarrett


Jarrett

This is Jarrett, he is 7 and he rocks Spina Bifida. Jarrett was diagnosed at 20 weeks in utero. Doctors urged us to terminate, but we knew God had a bigger plan for us. Jarrett has never ceased to amaze us. He always worked so hard at physical therapy and did so with a confident and adorable smile. In recent years Jarrett began playing baseball for Miracle League of Mercer County. He has developed such a love for baseball especially for the Trenton Thunder since they have partnered with Miracle League. A few games a season the Trenton Thunder come to the Field of Dreams to play with the kids. It is just amazing!! Jarrett has become quick friends with a few Thunder players like Dan Fiorito and Cale Cashow. We make it a point to see them play many times throughout the spring and summer months at their home field called Arm & Hammer Park.

We had a major milestone this year......Jarrett began walking without his walker. He first started doing this around the house and then he did it at his Miracle League game. God had a plan for our boy and it was to redefine what Spina Bifida is and breakdown barriers for those with mobility impairments.

Above Jarrett with Cale Cashow and Jonathan Holder of the Trenton Thunder.

Wednesday, October 12, 2016

Faces of Spina Bifida: Meet Zachary


Zachary

This is Zachary. The youngest of 3 boys, and doesn't let anything hold him back.

Our diagnosis day is September 30...and always so fitting that SB month starts the next day. Here he is now 6 1/2 years old. He is funny, stubborn, and constantly drives his brothers crazy.

He swims, plays hockey, baseball and golf.

Regardless of where you are in this journey of parenthood, the joy you have along the way will always out weigh the difficult, the heartbreak.

And that goes for SB or not.

You are exactly where you are supposed to be. Your kid is going to move mountains. So enjoy the mundane and rejoice in the victories.

You've got this.

And remember you're not alone.

Tuesday, October 11, 2016

Faces of Spina Bifida: Meet Kasey

Kasey

My daughter Kasey is 8 years old. She plays t-ball, is in adaptive swim, loves playing with her siblings, drawing, riding horses and riding her handbike.

She's also got Spina Bifida and is what you would call a "full time wheeler."

While she has had 13 surgeries so far (and number 14 is scheduled for after the holidays), she doesn't let it slow her down. She loves trying new sports and activities through the local rehab facility.

Prior to her birth, I remember being scared of what the future was going to hold for my sweet girl. I wish now that I could go back in time and let myself know that everything was going to be okay. Spina Bifida isn't a death sentence, it doesn't mean that Kasey can't live life to the fullest, it just means that sometimes she has to do things just a tad bit differently.

Monday, October 10, 2016

Faces of Spina Bifida: Meet Charlie

Charlie

Charlie is a smart, funny, energetic, feisty, motivated, athletic, imaginative first grader. He loves drawing, superheroes and sharks, and one of our favorite things to do together lately is read. He is the best pretend ghost, or alligator, or shark or superhero I've ever known. As a baby he had little interest in stuffed animals, and now he loves them and carts his "pets" wherever I will let him. He is learning everything about animals, and loves spooky things like vampires and haunted houses, at least in theory - but he wouldn't go in the Haunted Mansion at Disney if you paid him a million bucks. Charlie has lots of  friends at school and he will talk to anyone, or no one at all, because he has lots to say. His favorite person in the world is his Papa, my dad, and he believes anything Papa says, wants to do whatever Papa does, and basically would trade me in for Papa on any given day. Charlie loves participating in the local Paralympic sports program and it's been so very good for his confidence. He says some surprisingly hilarious or poignant things sometimes, and alternates between immature jokes about bodily functions and maturity beyond his years. He asks lots of questions about God and Jesus, and has forced me to do the work to find him places and books and people for answers, which I should have been doing all along. He still snuggles with me, but hates lipstick kisses on his cheeks and he does not always do what he's told, and sometimes he gets sassy, or downright bossy.

Basically, Charlie is a typical six-year-old boy. Who happens to have Spina Bifida. All those descriptive words and many, many more come before the words "Spina Bifida" when it comes to Charlie.

And that's what I would have wanted to know when I, pregnant with him, found out Charlie would have SB. Life looks different for us, sometimes, than it does for families with only typically developing children...but it also looks different from families with multiple children, or no children, or two parent households, or....really, isn't everyone's family unique? It just so happens you can see what makes ours different in the shape of a little red wheelchair with light up wheels and some leg braces with batman on them.

Charlie is typical of children with SB, from what I can tell. Typical in his abilities and his challenges, and he is miraculous and amazing, made perfectly by God as a gift to me and all of our family, the people he meets and whoever he will impact in the future. Of course there are medical extras, but the ones I thought would be the most difficult are really the most cut and dry. And vice versa, the ones that aren't listed as the big deals are, well, the bigger deals, when it comes to actual practice. And most challenges we face have nothing to do with SB and are things all or many families run across at one point or another. None of those things detract from Charlie's value, the joy he brings or his potential to make an indelible mark on this world. Although there are days when worries or procedures or challenges dominate our thoughts, there are far more days where our lives are routine and SB is just background noise.

If you ask Charlie about his life with SB, as I did recently, he will matter of fact say it's why he can't walk and uses a wheelchair. He will say he feels like the smallest in his class (of typically developing first graders), especially if he is on the floor, and that part makes him feel sad. He will say he feels strong and smart, and that he is happy, and wants to be a police officer when he grows up, or maybe a veterinarian, a Paralympian or President, or a Power Ranger. He wants to be a dad, and to have a wife and a home, where he will be the adult and get to tell his children what to do (Ha!)! Some of those goals are options, and some probably aren't - like, aren't the Power Rangers so 1990's? - but one thing never in doubt is his heart and drive to reach whatever peak he finally settles on and aims for. Never doubt Charlie was meant for this world and that mommying him is my greatest accomplishment and will forever be the most important job in my life, and also the source of my greatest joy. Life without Charlie, just exactly as he is, would be so pale in comparison for lots of people - he is absolute living color and Spina Bifida might as well just get out of the way.



Sunday, October 09, 2016

Faces of Spina Bifida: Meet Damon


Damon
Age: 2.5

Word that describes him: Charismatic

What I wish I had known before having a child with SB: It would change my perspective on life in such a positive way...he's medically complex yet so cheerful, resilient, and outgoing... he's taught me to live life to the fullest no matter the circumstances and to overcome and conquer adversity with a smile and real heart.




What I want other to know: We like Questions! We like informing and advocating! It's okay for you and your children to ask question. He may be physically different but our similarities outweigh the differences. Include people who are different, a lot of the time people with disabilities can do the same things you and I can in just a different way.

Damon also loves cars, trucks, and trains. Typical boy!

Saturday, October 08, 2016

Faces of Spina Bifida: Meet Sarah


Sarah

Our daughter was born in China with Spina Bifida. Most likely due to her disability she was abandoned and brought to an orphanage. We got to adopt her at age 3. She is now 10 and enjoys piano, tae kwon do and school! She loves hanging with her mom and besties, too! One of her favorite weeks all year is TLC camp for kids with SB. We are continually surprised by her grit and positive attitude even when SB gets a little rough! We are truly blessed that we got to be her forever family!


Friday, October 07, 2016

Faces of Spina Bifida: Meet Charis


Charis

Charis is a compassionate and tenderhearted young lady. She loves animals and she works extremely well helping other children who have special needs. As our oldest child, twelve year old Charis has initiated us both to parenthood and Spina Bifida. She loved caring for her three younger siblings when they were babies and now they do a great job of watching out for her as well. She is active in church activities and Girl Scouts. Charis enjoys anything American Girl, watching movies involving horses, TV shows that relate to medicine or crime investigation, playing with babies and toddlers, shopping, coloring, and listening to music.

Charis wishes she could wear cutesy, fancy, heeled shoes, sandals, and flip flops. She also wishes she didn't have to deal with bowel/bladder issues. As a parent, I would love to heal her brain so she could fully function on her grade level rather than having a mind that functions about five years younger than her age. Despite these wishes, we are thankful we have Charis and all that she contributes to the beautiful uniqueness of our family. We look forward to helping Charis grow and mature into the beautiful, thoughtful, caring young lady we envision her becoming. Charis has hopes of becoming a nurse and we envision her using her skills to help other children with special needs.


Thursday, October 06, 2016

Faces of Spina Bifida: Meet Arwen

Arwen

Arwen was diagnosed in utero at 18 weeks with myelomeningocele Spina Bifida L4/L5-S3. She is now a happy 6 year old who loves life and keeps a smile on her face even when her life goes through the trenches. Her fighting spirit and strength come only from our Savior, Jesus Christ who already paid the price for her on that cross so many years ago. She is able to walk unassisted but has a gait/crouch with rotation, but she fights hard every day to not let that keep her down. Arwen has a neurogenic bowel and bladder, so she is cathed multiple times a day and follows the Cincinnati Colorectal Bowel Enema Program. Arwen has a VP shunt for hydrocephalus (fluid on the brain) that was put in when she was 9 days old. We are very thankful that we’ve only had a few scares with the shunt starting to malfunction, but has corrected itself without any intervention.We look forward to what God has in store for her in the years to come. She will have many good and bad days, but we will continue to point her to the cross through each trial and blessing she faces.


Wednesday, October 05, 2016

Faces of Spina Bifida: Meet Gage

Gage

This is 9 year old Gage. Gage loves Darth Vader and Star Wars right now, nearly to the point of obsession. He participates in a program called Acts, Jr., which is a weekly drama group for kids of all abilities. They put on a play at the end of each semester, and this semester will be Gage's 4th play. This is right up Gage's alley. He also plays Braves baseball and wants to play football soon. When he grows up he wants to be a museum employee. He loves to hunt and killed his first 2 deer last year.

Gage wears braces to walk and has PT and OT twice a week. He's home schooled, and science is his favorite subject. Gage has had several surgeries, including shunt replacements, Chiari decompression and arachnoid cyst removal, and tendon release. These haven't slowed him down for long.

From very early on, it was obvious that Gage had personality to spare. He loves people and knows more people in town than his parents do. He rarely forgets a name or a face. I think he needs to be a speech language pathologist when he grows up, except that I'm not sure he'd stop talking for long enough for his clients to say anything. He's empathetic, and hates for anyone around him to be upset. He doesn't have a shy bone in his body. Recently, a couple of well-meaning strangers have asked about his braces or said they'd pray for him due to his disability. His usual, confident response is "Thanks, but these braces just help me walk better. I'm not hurt or anything." I did not coach that, but I love it.

Tapestry of Grace, Year 3, Unit One

We wrapped up our first unit last week. Here are the highlights from the last few weeks of school.

Year 3 picks up right where Year 2 left off. I love the continuity of Tapestry of Grace. Everything just flows together. We are continuing to learn about the early years of the United States.

I bought this book as a supplement to our studies. It came with a map and stickers so we can add states to our map as we learn about them in our studies.


We learned about the 3 branches of government.

We've studied the first 5 presidents of the United States. I bought the Presidents cards in the $1 section at Target. They are perfect for our studies because they list facts about each president on the back. 

We spent some time reading about Lois and Clark and their expedition into new territory.

We started a collage poster. We will be adding to it throughout the year.

We use this book to help us draw the pictures for our collage poster. These are great books, I highly recommend.

We are also working our way through History Pockets. These make for a good review of what we are learning and they offer some fun activities. 

We made a state info card for each state as they became a part of the US. I got the flag stickers here.

Benjamin is working on his own U.S. Presidents book. I love that both boys learn the same things at the same time....just at a different level. I found all of the President coloring pages on the Crayola site


We studied the Star Spangled Banner and made our own flags. Caleb made his out of Legos and Benjamin used construction paper. Did you know the flag of 1812 is the only U.S. flag to have 15 stripes instead of 13?

We completed another lapbook. I still love these. Since our units are about 9 weeks long, the lapbooks serve as a great review at the end of the unit. We didn't just learn early U.S. history but we also studied Napoleon and Simon Bolivar. We also covered some of the big inventions during this time period. 

Working hard.

Love my little lefty.

We use A Reason for Handwriting. Benjamin loves to put his copy work on the fridge. I had to remind him that there are 36 weeks of school and the fridge isn't big enough to display everything.

The boys started a new co-op this year. The co-op/mother's day out that we have done over the last couple of years isn't running anymore but a brand new co-op sprung up within minutes of our house. This one is a true co-op where the parents are the teachers and everyone pitches in. It is every Monday morning for 3 hours. The boys each have 3 classes that they attend during that time.

First day of the new co-op. The boys were a bit nervous but excited too. Luckily they saw some friends from their old co-op at the new co-op.

Benjamin in his Land Animals class.

We also squeezed in some fun nature walks. The boys really enjoyed a nature class on owls. They got to dissect owl pellets in search of bones. The found entire skulls in the pellets. It was really cool.


And we saw an actual Barred Owl in a tree!


Our town started this really fun community activity. You paint rocks, hide them, post clues, and go searching for rocks. The boys were so excited to find 3 rocks on our nature walk. We painted some today that we plan to hide this week.


So that is a quick recap of the last few weeks. 


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