Monday, October 31, 2011

Faces of Spina Bifida: Meet Carter, Lewis, and Bryce!

Meet Carter

"The thing I wish I would have known before: Is how happy we would be. After hearing the diagnosis of SB, I was so worried that our family would never be happy again. We were just so sad and being happy seemed impossible. Wow, was I ever wrong - nothing could be further from the truth! Yes, we have our tough days, but we have a better appreciation of the little things and the small blessings of life do not go unnoticed. I'm so glad that God chose me to be Carter's mom. He has taught me so much about what's important. And seeing his smile and hearing his little giggles everyday make me very HAPPY! :-)"

Caringbridge:  Carter

Meet Lewis

"I wish I had known that life will still be normal! The things I worried about when I was pregnant- some of them will happen. But they don't take over our life, they're just a small part of it! SB is not the first thing I think about when I wake up in the morning and it's not the last thing I think about before falling asleep. It's just a small part of our family's life and it makes me appreciate the rest of it so much more!"

Meet Bryce
(6 years old)

"I just wish I had known how amazing my little boy would be. I wish I had not spent so time grieving about what I was not going to have than what I was going to have with him. He is the best thing that has ever happened to me and I cannot imagine my life without him."

And that's it folks!  The final day of "Faces of Spina Bifida".  I hope all of you enjoyed meeting these wonderful  kids and reading about the impact they have had on their families.  Hearing about what a blessing these kids are is so important to those parents out there that have just received the SB diagnoses.  I would have given anything to stumble upon a blog like mine and all the other blogs out there when I was pregnant and terrified, so I could see that these kids are just kids.  They look like kids.  They play like kids.  They smile.  They laugh.  They bring incredible joy.  What a blessing.  I have enjoyed doing this so much!  Maybe next year I'll ask all the dads out there to contribute something, it might be nice to get their perspective too!

I think I featured everyone that contacted me, I tried to stay organized but it is certainly possible that I left someone out.  I apologize if you contacted me and I did not feature your child.  

It occurred to me that I never featured Caleb, but I figure if you have followed this blog for any amount of time then you already know Caleb.  But if you haven't had a chance to read his story, then I encourage you to do so.  I guess I should answer my own question: 

 "What do I know now, that I wish I had known then?"

I wish I had known how beautiful he would be.  I wish I had known how much he would change me and my heart.  My purpose in life is different because of Caleb.  I am involved in things and doing things that I would never have attempted if it weren't for him.  He brings out things in me that I had no idea were there.  I wish I had known what a sweet heart he would have and how preciously sensitive he would be.  I wish I had known that he would have the best belly laugh ever!  I wish I had known that he would be a kid, just a kid, doing kid things.  I wish I had known that the ability to walk doesn't define a person.  A wheelchair is a blessing not a curse.  I wish I would have seen that God was in control and that He would give me the strength and peace I needed. I wish I knew all that God would work in me and change in me because of Caleb.  The world is a better place because Caleb is in it and I am a better person because I was chosen to be his mom.

Sunday, October 30, 2011

Faces of Spina Bifida: Meet Rennick, Justin, and Kasey!

Meet Rennick

"If only we would have know a year ago what joy Rennick would bring to our lives. He is 10 months old and the most precious gift God could ever give us. We are so proud of every single thing he does. We never could have imagined the love our little boy would bring to us. His infectious smile is enough to make every day wonderful. Rennick is our little chubby face of spina bifida and we love every single part of him. Yes, the journey is difficult...but the rewards are immeasurable."

Caringbridge:  Rennick

Meet Justin

"I wish I had known that being a special needs parent is a lot easier than anticipated. Despite the positive feedback I had from family, friends, and bbc, I wish I would've realized that doesn't mean EVERY DAY will be easy. It's still tough. there are things I am having trouble dealing with, but overall, it could be worse. I wouldn't know the good if I didn't have the bad. We are so proud of Justin and his accomplishments, regardless of how long it takes for him to reach them. We treasure them more because we know how hard he works to get to where he is."

Meet Kasey

"I wish I'd known then that despite the dark picture painted for me by her doctors- Kasey would bring brightness and happiness to everyone she meets and that things would not be that bad. Sure, there would be times when things would be hard but it would not be as bad as the doctors said. I think that would have made things a lot easier for me emotionally."

Saturday, October 29, 2011

Faces of Spina Bifida: Meet Jonathan and Luke!

Meet Jonathan
(2 1/2 years old)

"I wish I had known that I was not alone. That I would meet other mothers and parents and children and our journey would be enriched because of them. I wish I would have know what Spina Bifida was, so I wouldn’t have be so afraid.  I’ve learned that; babies grow up too fast, there are more good days than bad, I’m stronger than I knew I could be, and sometimes my youngest child Owen is more of a challenge than his big brother Jonathan has ever been :)"

Meet Luke

"So many answers to this question. First of all, I wish that I knew about the importance of folic acid during pregnancy....any pregnancy. I wish that I knew that even the amount of folic acid found in a prenatal vitamin is not sufficient. I wish this information was more accessible to the public. I also picture myself when I first found out that Luke had Spina Bifida at 5 month gestation and wish I knew this....... Spina Bifida is not a death sentence. SB kids are some of the most amazing kids in the world. They love, they laugh, they play, they capture your heart, and they change your heart forever. Having Luke in our lives has been the biggest blessing that God has given us. He fills me with more love that can be measured. He shows so much determination and hope. He is so special, not only to us.....but to everyone that he comes in contact with. What do I wish I knew??? That God picks special parents for kids with Spina Bifida. It sometimes can be a struggle, but the love you receive in return is a blessing beyond measure."

Friday, October 28, 2011

Faces of Spina Bifida: Meet Carson, Aiden & Chloe, and Evangeline!

Meet Carson

"I wish I had known how much Carson would mean to me.... When we found out about his spina bifida I did not have any children yet. I loved him sooooo much already as he grew inside of me. However, it was magnified by about 3 million times when I met him face to face. I remember looking at him that first time and saying to myself "He's so perfect, and I'm so blessed." When I look at him today my heart melts with love, and pride, and joy. He makes me smile when he's really doing nothing at all. I'm hooked on him :) The fact that he has spina bifida doesn't change that one tiny bit. It doesn't even matter. He's my baby boy."

Meet Aiden & Chloe
(Aiden-4, Chloe-14 months)

"I wish I had known not to spend so much time worrying about the things my children can't do, and more time enjoying all the things they can. Having 2 with spina bifida is not always easy but I cant imagine life without them. My babies are my heroes, my inspirations and my reason for living.

Meet Evangeline
(7 weeks)

"At only 7weeks old there is a lot I don't know about her what her favorite color crayon will be or how spicy she likes her chili. But what I DO know is: she's perfect. I imagine her life and I don't see a disability. I see her successful and thriving. I see a master painter. A concert violinist. I see a pulitzer prize winner. A scientist. A mathematician. Somebody who wins the gold medal for pistol shooting in the Olympics. I see a beautiful bride. I see promise, possibility. Most of all, I see somebody I love more than I thought possible. God blessed me richly when he made me her mom."

Blog:  Evangeline

Thursday, October 27, 2011

Faces of Spina Bifida: Meet Hunter, Brandon, and Ronnie!

 Meet Hunter
(2 years old)

"What do I know now that I wished I had know then? There is so much, but the main thing that I wish I would have known is what an impact Hunter would have on our lives. He has taught us so much in two years, and allowed us to meet such wonderful people. He is determined and a complete joy, his smile can light up a room. God has allowed us to raise an amazing little guy."

Caringbridge:  Hunter

Meet Brandon
(6 years old)

"I did not know until he was born that Brandon had Spina Bifida. His lesion is deceptively low and small and I was receiving my care at a local hospital, not a large place, and no one had seen it on ultrasound. Anyway, I went in to the hospital in labor, they determined his heart rate was decelerating so I had an emergency csection. When I woke up from being totally knocked out, the nurse was trying to rouse me. I can remember her words clear as day, “wake up, your baby has spina bifida”. What a way to wake up. They sent my son 3 hours away to be operated on, I joined him and my husband in 18 hours, as soon as I could get out of bed. I cried all night on my mother’s shoulder, I had no idea what was happening or what spina bifida even was for sure. What I wish I had known was that everything was not hopeless, that my son is an angel on earth, and all the extras we have to do for him just make us love him even more. I was so worried about him walking and having to catheterize that I was sick. Today he is an energetic 6 year old on wheels. He knows more people than I do around town, he goes to regular school with regular kids and they all adore him. While I do not understand exactly what God’s plan is for him, I know there is a very important plan for his life and he already has touched so many people with his wonderful spirit."

Meet Ronnie

"Ronnie came to my family just two years ago. Fourteen years in the foster care system, 5 years when his wheelchair wasn’t allowed in his foster parent’s house but had to be kept outside, years spent watching his birth mother slowly commit suicide with drugs and alcohol, and many years spent without proper attention to this spina bifida – all these things affected Ronnie, but never kept him down for long.
He always wanted to play sports, but such frivolity was never allowed in his foster care world. As soon as he moved into his life with a forever family, his health issues were addressed and he started playing wheelchair basketball!
He is a star player on the team, the Sportable Spokes, and almost every day tells me how happy he is and how grateful he that he can finally play sports.
Spina Bifida? Perhaps an annoyance in his teenaged life, but definitely nothing that is going to hold him back now!!

I am feeling very emotional today.  I look back at all the beautiful lives I have featured on this blog and I'm sad for the babies that are never given a chance at life because of SB.  Yesterday, a mom posted on the BabyCenter group.  At 22 weeks she was told that her baby had Spina Bifida.  She was told horrible, horrible things.  Devastating things.  She truly believed that her son would not survive, and if he did, he would have no quality of life. She believed this because she trusted her doctor.  She believed him. She took him at his word.  Her husband and her made the incredibly difficult decision to terminate the pregnancy.  They forced labor and she gave birth to her son at 22 weeks. He was alive.  He lived for a few minutes, long enough for this heartbroken mom to see that her son was beautiful and perfect. Long enough for her to sing him a lullaby as she held him.  When I read this mom's post yesterday, I just felt such sorrow for her.  My heart breaks for her.  She has now seen that SB is not terminal.  She has now seen that she was lied to.  She made a decision based on the very grim information she received.  My heart hurts for her.  I cry for her.  And then I get angry. Angry at these doctors that tell these expecting parents such horribly false, outdated, and flat out ridiculous things.  Why do these doctors do this?  Are they reading from some medical text book that is 35 years old?  Do they believe what they tell these parents?  Have they ever even seen a child, teenager, or adult with SB?  What is wrong with them?  It really ticks me off.  October is Spina Bifida Awareness month and it appears that the people who need to be made AWARE are the very people giving the diagnoses.  They have no clue what they are talking about.  The first rule of medicine is: Do No Harm, and yet the majority of babies with SB are terminated and that is likely due to some stupid doctor who told some terrified, grief-stricken parents a bunch of lies. 


But what do we do about it?

Wednesday, October 26, 2011

Faces of Spina Bifida: Meet Grayden, Olivia, and Zachary!

 Meet Grayden

"I wish I would have known that just by knowing you, you would change my life and make me a better person. All the worries I had when I was pregnant seam insignificant now that I know you. You are such a happy little guy with such a fun personality! Because of you I have met so many amazing people who have become so important to us. You are the light of my life Grayden and such a great asset to our family. I can't imagine life any other way. Grayden the sky is the limit! I love you to the moon and back!"

Meet Olivia

"I wish I had known that Olivia would complete our family in a way we could have never understood. I wish I would have better understood that this is Olivia's Life Journey and I'm the lucky one who gets to support her and help her along the way. She's perfect in her own perfect way. She's taught us to slow down, to notice, to understand the physics behind movement. I wish I would have known how many people' lives are brightened by my daughter's smiles. Olivia's laughter is contagious! We all adore her."

Meet Zachary

"I wish I could have known how sweet he was going to be and how he would have made his brothers and us better people. That after our first diagnosis of him possibly not having a fully formed skull, we would literally have a walking miracle in our house before he was 18 months old. He is a miracle in every sense of the word."


Tuesday, October 25, 2011

Faces of Spina Bifida: Meet Esther-Faith, Alex, and Arwen!

Meet Esther-Faith
(Caleb's future wife-it's already been decided)
(5 1/2 years old)

"I wish I knew...

That the journey may feel lonely, but only when I don't look around and see the awesome people on the path with me.

That there would be frightening moments, but that those moments are a mere fraction of the life with Esther-Faith.

That she would be so wonderful. And that being her mom would be the greatest gift.

That she would provide the healing that Isaiah's heart needs. 

That loving her would change everything.

That even though caring for her can be difficult, loving her is the easiest thing.

That she would be Isaac's best friend. And he would be her's.

That Spina Bifida does not define her. She is SO MUCH MORE. 

I wish someone would have congratulated me. Instead of dwelling on the shock of the diagnosis, I wish someone would have pulled me aside and said, "Congratulations. You're having a baby. And it is going to be awesome."

Blog:  Henn House

Meet Alex
(2 years old)

"I wish I would have had a crystal ball into the future, doesn't everyone? I wish I could have trusted God more. He doesn't make mistakes. I wish I would have listened to the "experts" less and my heart more. "They" told me he would have a poor quality of life. HA! Alex is full of life and happiness and makes everyone else around him smile too. No he can't walk but that is hardly the measure of quality of life or his abilities to be happy. Alex shows us that every day when he's racing around in his wheels giggling as loud as can be."

Meet Arwen
(20 months old)

"She is a happy 20 month old toddler 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. We pray that Arwen clings to that hope through every trial, tear, joy, and miracle that she faces."

The month is almost over people so stop slackin'- if you want your kid featured then email me:  cassie.mclelland@gmaildotcom

Monday, October 24, 2011

Faces of Spina Bifida: Meet Brianna and Nickolas! And a day of Prayer.

 Meet Brianna

"What I know now that I didn’t know almost 17 years ago is that my baby girl would be just like every other teenager. I was told I was too young (18 yrs old) to have a child with a disability. I was told Brianna would have severe physical & learning disabilities. Today Bree is a Junior in high school a honor student taking pre-AP courses, a honor student, a member of Beta club, high school marching band, part of the schools yearbook staff, and participates in youth group of our church. The only difference is she rolls instead of walks. All I can say, is we serve an awesome God!!!"

Meet Nickolas
(almost 2)

"Happiness, the one thing that I wish that I knew on D-day (diagnosis day) was that there will be happiness. No matter what medical terms they tell you your child has, no matter what limitations and expectations they set for you, there will be happiness. You will see your child smile and laugh, you will see them happy. I remember the first time I heard that joyful belly laugh (this was the child the doctors said shouldn’t have life).

I wish that I could have known that even when you are dealing with shunts, with cathing, constipation and mobility; with hospital stays and surgeries, doctor appointments, therapies and clinic visits; there is still happiness. There are still moments in the day where you just smile ear to ear and laugh at the crazy things your kid does. You will have moments in your day where you would not change one single thing about your life. I wish that I would have known how that trumps everything else."

As we recognize October as Spina Bifida Awareness Month, we also take time to pray.  Today is the Spina Bifida Day of Prayer.  Here are some things that we can pray for.

1. Awareness. 
Spina Bifida is the most common permanently disabling birth defect in the United States, yet no one knows what it is. (What is Spina Bifida? We pray for the Spina Bifida Association and its chapters to create a unified and effective message of hope and help. And we pray that society would see people with Spina Bifida and other disabilities as valued citizens. 

2. The medical community.
We pray that the medical community would understand the birth defect and its related issues. We pray that obstetricians would be educated about Spina Bifida and will give expectant parents the diagnosis accurately and compassionately. We pray for continued research and medical advancements to improve the lives of children and adults with Spina Bifida, to find ways of preventing Spina Bifida, and to find a cure.

3. The parents. 
We pray for the parents who find out their unborn child has Spina Bifida, that you would give them hope and peace beyond all understanding to make the decision to give life. (64% of pregnancies affected by Spina Bifida are terminated.) We pray for the parents who watch their children (young and old) struggle with the challenges of Spina Bifida, that they would be given the strength they need to get through each day and the wisdom to raise their children as you want them to be raised.

4. Children and adults with Spina Bifida. 
We pray that you would make them lights in a dark world, to be instruments of your divine purpose and will. We pray for their physical wellness, but also for them to use the challenges you gave them to bring you glory.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 
Philippians 4:6

Sunday, October 23, 2011

Faces of Spina Bifida: Meet Joshua and Derick!

Meet Joshua
(one year old)

"I wish I had known how amazingly perfect he was going to be and what joy he would bring to my life. I was so worried about the Spina Bifida that I spent most of my time pregnant stressed out about that instead of looking forward to my beautiful and perfect little boy! What I would tell any other mom expecting a baby with SB is not to worry because in the end it will work out the way it is meant to work out and no matter what I wouldn't change a thing. I love you little man!"

Meet Derick

"Derick is 19 months old! I wish I would have known that Derick was going to turn out just fine and be as normal as can be! (the doctors made me think he wasn't going to make it as far as he has) and I wish I would have known to take folic acid but really more than anything I just wish I would have known my son was going to be ok and not some monster they (the dr) made it sound like!"

Saturday, October 22, 2011

Faces of Spina Bifida: Meet Jeremiah and Tanner!

Meet Jeremiah
 (17 months old)

"Jeremiah is a spunky 17 month old who loves to laugh, tease his sister, and flirt with the ladies. He has just started to say some words. He crawls and can pull up to standing. He knows no stranger. 

My father- in-law is the preacher at our church and he used Jeremiah as an illustration today. When I hold Jeremiah on my shoulders, as long as I'm holding on to his back or his hands, he laughs and enjoys the ride, but when I hold his ankles, he gets nervous and holds on to my hair. He can't feel my hands on his ankles even though they are there. I think it is similar to what God does with us- When we get devastating news, it sometimes feels like God is not with us, not holding on to us. But God is there, even when we cannot feel him.

Although life has been difficult at times since Jeremiah's diagnosis, I can look back and see God's hand guiding our family. It has made me a much more sympathetic and compassionate person. Jeremiah is a blessing. It is our family's prayer that Jeremiah's life will glorify God and encourage others."

Caringbridge:  Jeremiah

Meet Tanner
(2 1/2 years old)

"What do I know now that I wished I had known when I found out about Tanner's Spina Bifida?

Wow! Where do I begin? There are so many avenues I could take. But the main things that stand out in my mind more than any others are...

- I wish I would have known what an absolute joy Tanner would be in my life! 
- How no matter how hard it gets, I AM strong enough to handle it!
- That the doctor that told me that Tanner would have no quality of life, was DEAD WRONG!
- How much I have and will continue to learn from him!
- How much happiness he truly brings into my life!
- How I had nothing to worry about because he is so much more than the Spina Bifida diagnosis!
- I really wish I would have not worried so much about all the "what ifs" and enjoyed my pregnancy.

I could seriously go on and on about how much I love and adore Tanner. He's my little miracle from God, and I love him to pieces!"

Friday, October 21, 2011

Faces of Spina Bifida: Meet Palmer and Zoe!

 WARNING:  Major Cuteness Alert!!

Meet Palmer
(9 months old)

"We had Palmer on January 21st of this year. I still remember October 13th, 2010 like it was yesterday. I struggled for a long time, but each day got a little easier because of our families, faith, our son, Oliver and all you amazing mamas! I knew I would, but I wish I would've known just how MADLY in LOVE I would be with him the moment I laid eyes on him. He is beyond perfection. Palmer is the happiest baby and smiles with his entire body, especially his eyes. No one is better than big brother, Oliver, at making sweet P smile :) We're so blessed to have two of the sweetest boys."

Meet Zoe
(one year old)

"I wish I had known what an amazing gift I had been given. That I was being guided by a higher hand than my own on a journey I would look back & be THANKFUL for. And wouldn't change. That our Zoe would be such a little superstar, that she would help not only redefine Spina Bifida, but would redefine ME!"

Thursday, October 20, 2011

Faces of Spina Bifida: Meet Alyssa and Anna!

Meet Alyssa

"I think back to before Alyssa was born, what a difficult time it was when we found out about her medical condition. We trusted God, but the fear of the unknown was overwhelming. My unspoken fear was that I would get so wrapped up in her medical issues that I wouldn’t know how to love her like one of my children. Now I laugh at the absurdity! To know her is to love her, plain and simple. I'm convinced that God gives just a little something extra to these kids - an extra splash of personality, an extra little zing to their sense of humor, just a little something extra. I never saw it before I had the opportunity to raise a child with Spina Bifida, but now it's so obvious to me, with every one of these children that I meet.

I'm not going to tell you that raising a special needs child is easy. 
But I am going to tell you it's worth it. 
It is so completely worth it."

Meet Anna
(6 years old)

"What do I know now that I wished I had known then? This may sound cheesy, but my answer would be nothing. I am so firmly convinced that God appoints our times and seasons that I trust that He wanted us to know exactly what we did know at the time and He didn't want us to know what we didn't know. However, if I could talk to another parent, I would just say, "This will become your new normal, and it's going to be ok."

Wednesday, October 19, 2011

Faces of Spina Bifida: Meet Toby and Owen!

Meet Toby
(4 1/2 years old)

"Unlike most other stories, our doctors didn't give us any predictions of Toby's growth and development after birth. In fact Toby would end up worse than what we expected - a trach, ventilator, g-tube, and spending the first three months of his life in the hospital. What I wish I would have known then, is Toby would overcome many of the obstacles thrown at him. He can now talk, eat a pureed diet (doesn't use his feeding tube much), and only needs his ventilator while sleeping. I wish I would have known that what we viewed as a tragedy would bring us to know more about God's grace, love, and mercy than ever before, and we would trust Him more every day. In fact, Toby's disability wouldn't be our greatest tragedy, but our greatest blessing!!"

I had the absolute pleasure of meeting Toby's mom, Carrie, a couple of summers ago (they live in Ohio, a bit of distance from me in Texas).
Carrie is such a dear friend to me.  I adore her and her precious family.  I think about moving to Ohio at least once a week so that her and I can be neighbors.  She is a fellow SB mom but more than that she is my sister in Christ and that is valuable beyond words.

Meet Owen
(4 1/2 years old)

"I wish I knew... that when the doctor said "He'll NEVER walk." that this could be a possibility."

(it looks to me like Owen is doing more than just walking!  The kid is playing SOCCER!! Proof that doctors don't know everything.)

Tuesday, October 18, 2011

Faces of Spina Bifida: Meet Gage and Evan!

Meet Gage
 (4 years old)
"I wish I had known how normal it would all be. During your pregnancy, everything is compared to normal- he has more fluid than normal, his legs aren't moving like normal, obviously that opening in his back is not normal. And you fret and worry and pray about those things and how you want them to be normal. But when he arrives, he IS normal. It's YOUR normal. He becomes real and beautiful and normal in your eyes. Your life will be normal. It will become your normal. He will never know any different, and won't "miss out" on anything."

Meet Evan
(2 years old)

"When we got Evan's diagnosis on June 10, 2009 I was devastated. I wish I could have known the amazing turn that my life would make. My life is so much richer now than I could have ever imagined. I am amazed at the people we have met on this journey and even more amazed by how happy Evan can be even with all he deals with on a daily basis. It reminds me that no matter how bad things are there is always a silver lining to every cloud."

(let me know if you want your child featured:  cassie.mclelland@gmaildotcom)

Monday, October 17, 2011

Faces of Spina Bifida: Meet Charlie and Cannon!

 Meet Charlie
(about 16 months)

"There is SO much I wish I had known then that I know now - that the moment he was born I would get the strength to be the mom he needed, that he would be so tenacious and never let anything hold him back, that even doctors don't know everything, that God really does give you only what you can handle, that Spina Bifida is a challenge but not defeat, that a shunt isn't the end of the world and is, in fact, a God send, that every situation gives you back what you put into it, that poop - of all things - would be our biggest Spina Bifida challenge...."

(okay, I totally love that Jennifer mentions poop!)

Blog:  Krousehouse

Meet Cannon
(almost 3 years old)

"I have to say that if I knew then what I know in those moments would have been so much easier! I wish that when I heard the words "the baby has Spina Bifida" that I would have known what an AMAZING baby he would be! The option of termination wasn't an option at all for us. But the fear we had of what we would have to face was horrific. I wish that I could have seen his precious spirit and personality in those moments when I was mourning. I wish that I didn't have to mourn, but rejoice and be thankful from the very beginning. I knew "God will carry us through this", But I wish that I would have really KNOWN. God did more than provide for us. He truly blessed us all. And continues to every day.
Cannon gets around the house either by commando crawling or in his wheelchair. He loves the freedom of his wheels, and being about to go just about anywhere. He is still using a loaner chair while we wait for his own. However that will be a while. I just found out that because Cannon is going to be having surgery soon, medicaid would deny the request until we know what his outcome will be. His therapist said they would want to know if he is going to grow or have function changes after surgery. UGH! More waiting!
Cannon talks like crazy!!! His vocabulary has grown tremendously in the last few months. And I attribute this to his wonderful speech therapist who has been with us since he was about 4 months old. He says some of the funniest things, that you didn't even know he could. He keeps me on my toes. Cannon is working on standing in his new KAFO's. And working very hard to get moving in his walker. He has been looking forward to October to get here so that he can start the fall session of hippotherapy. He loves riding the horses! Cannon still has a huge love for balls...and especially baseball! Everything is all about baseball these days! I only wish that I knew then that we would have a normal's just "our" normal! And I love every moment of it!

Sunday, October 16, 2011

Faces of Spina Bifida: Meet Declan and Aleria

Meet Declan
 (almost 3 years old)

"I would have to say that the one thing I know now that I wished I had known then was that everything is easier and different that what they told us before Declan was born. I can honestly say that I would not change a thing about my life with Declan or any of my other boys."

Meet Aleria

"I wish I would have known how wonderfully blessed I would be. While I was pregnant I was so worried about how we could handle a special needs child instead of enjoying being pregnant. I was trying to control the situation instead of remember that God is in control and he knows what he is doing, not me. Our family has been blessed beyond belief since Aleria's birth. She has taught us so many things and we are so grateful that we were chosen to be her parents!"

Saturday, October 15, 2011

Faces of Spina Bifida: Meet Ethan and Gwen!

Meet Ethan

"I wish I knew that this entire adventure would not be nearly as bad as the prenatal Dr’s (all of them) were telling me. I also wish I knew then what a wonderful second family I would meet, and the knowledge I would gain about Spina Bifida and all the other fun things that come along with it. I wish I knew then how strong my son would be and all that he would accomplish instead of being told he never would."

Meet Gwen
(2 years old)

"My husband and I frequently reminisce about "what we wish we had known back then." In all honestly, it's all the little things.

We were told while pregnant that Gwendolyn would probably never walk and in all likelihood would be severely impaired cognitively. I guess doctors have to give you the worst-case scenario just in case but back then, we thought it was more of a solid diagnosis instead of an extreme end-of-the-spectrum possibility.

But as for what I wish I specifically knew...

-I wish I knew how gosh darn CUTE she would be!
-I wish I knew that when she was a baby in the NICU even the nurses could tell she was a sweet and gentle spirit. But a fighter!!
-I wish I knew how many individuals her little life would touch.
-I wish I knew how incredibly amazing she would be.
-I wish I knew what it would sound like to hear her say Mama!
-I wish I knew that her twin sister would be so loving and caring to her. And feel the need to find her "Gi-Gi" (Gwen) in the crib next to her before doing anything else every morning.
-I wish I could have felt her big squeezes around my neck and her sloppy kisses that melt my heart.
-I wish I could have already seen her smile and heard her say "hey" when I enter her nursery each morning.
-I wish I would have known the joy she exuded when she took her first steps in her walker.
-I wish I knew how incredibly precious it would be when she finds a toy she's been looking for and exclaims "there it is" with an excited shrill.
-Most of all, I wish I knew back then that I really COULD do this.

Spina Bifida doesn't define our lives as much as we once thought it would. It is a part of our lives yes. But definitely not the most important part. We have Braelyn and Gwendolyn who fill that spot."

Blog:  Our Twins

(don't forget to email me if you want your child featured!  cassie.mclelland@gmaildotcom)

Friday, October 14, 2011

Faces of Spina Bifida: Meet Kingsley and Maddie!

Warning:  Major Cuteness Alert!

Meet Kingsley
 (21 months old)

"What I wish I had known could fill volumes! Everyone said things would be okay and I wish I could've known that that was true, because it is. I wish I had known that our life wasn't really going to change that much and mostly in ways that were for the better. I wish I had known how incredibly awesome Kingsley was going to be - I mean, I should've known based on my previous kids. ;) I wish I had known that levels and walking and any of the other 'stuff/diagnoses' that I was desperate to know about wouldn't define Kingsley any more than his hair colour or his big blue eyes. But on the other hand, I think that not knowing any of these things has made me acknowledge and appreciate them more than I ever could have had I been handed a crystal ball. We live life more fully knowing what a gift every thing is, now that we do know these things."

Meet Maddie

"I wish I would have know how completely capable BOTH of us would be. There's nothing I can't or wouldn't do for my little girl...and she shows me on a daily basis that she can do anything she sets her mind to."

Thursday, October 13, 2011

I guess I should blog about my own kids too!

I've been so busy blogging about everyone else's kiddos for "Faces of Spina Bifida", that I've neglected to blog about my own!  So here are a few pictures from the past couple of weeks.

Last Friday Caleb's school had a PTA fundraiser called the "Eagle Run".  Basically the kids run laps to earn money for the school.  In the past this event has been in the grass which makes it impossible for Caleb to participate without someone pushing him in his chair.  But this year the event was held in the parking lot which allowed Caleb total independence and he had a blast.  Such a small change made such a huge difference.  As far as he was concerned, he was running with his friends.  I had so much fun watching him have fun.
(fastest Kindergartener in the world!)

And while Bubba was doing his Eagle Run, Benjamin was finding entertainment of his own.
(playing with his cars)

(collecting sticks for mommy to hold)

Here is a picture of Caleb with Izzy Bell.
We have had her almost 3 weeks now and I'll admit that there have been days where I have asked myself (more than once), "Why did we get a puppy!?"  I feel like I have added craziness to an already crazy house! But she is ours now and I know that the puppy phase will pass and eventually I will be able to walk around the house without her nipping at my toes.  The boys love her.

Monday was a school holiday so I took the boys to the park.
(spinning on the tire swing)

I've mentioned before that there are train tracks right next to this park and a train moves through at least once an hour.
I love that they are both holding their ears.  Makes me smile.

And this just may be my favorite picture of Caleb...ever.
I just love that he wanted me to take this picture.

And finally, as I was getting Benjamin ready for school this week, he said he wanted spiky hair like Bubba. 
How cute is this kid!?  And when did he become such a big boy?  Where is my little 4 pound baby?  They just grow too fast.  Little stinker.

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