Friday, October 21, 2016

Faces of Spina Bifida: Meet 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


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 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 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


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


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:

Saturday, October 15, 2016

Faces of Spina Bifida: Meet 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.

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