"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
" Faith makes life possible. Hope makes life workable. Love makes life beautiful."

The Winwards

The Winwards

Thursday, November 13, 2014

Spina Bifida Awareness Days 21-31

Day # 21 
Every life is a miracle, we all have differences, and that is what makes us all so unique. 

Day #22

Day # 23

Day #24
It's not hard to love someone born with Spina Bifida!

Day #25 

Some say that -

Day # 26

Like every parent, mothers and fathers of children with Spina Bifida eagerly wait for their child to reach those “all important” developmental milestones. We get all the same emails (sometimes even if we've unsubscribed!) each month telling us what our baby should be doing. It can be very disheartening, not to mention frightening, when we watch our little one fail to develop these important skills. But over time you learn that he/she will meet those milestones when they are ready. At the same time you come to grips with the reality that some skills will take many years to acquire, if ever even possible at all. And finally, you hold on to Hope, whether in your heart or in your faith in God, for the miracles to happen right before your eyes.
Tanner learned to sit at 8 months old, army crawl at 10 months, 4 point crawl at 12 months, and pull to stand at 18 months. He didn't progress to independent standing or walking, and probably never will. That is one of the things that, I as his mom, have had to come to grips with. I am OK with him using a wheelchair! It gives him freedom, and he LOVES it. I have learned that walking is not everything. And I wish society would feel the same way. He is SO AWESOME the way he is!
"Life is not a matter of milestones, but of Moments"

Day # 27 

Tanner loves to play with other kids.  He is a kid after all.  Using a wheelchair doesn't change that one bit! 

Day # 28 
Having a child with a disability of any kind can be particularly challenging for the sibling(s). It’s not easy when your mom and dad have to spend extra time caring for your brother. When, in their concern to meet all his needs, they inadvertently spend less time with you. Maybe they expect more of you without realizing it. Maybe they ask you to understand things that your little heart and mind just simply can’t yet. Having a sibling with a disability can be tough but it can also be one of life’s unexpected blessings. It can teach you to be empathetic and enable you to understand what acceptance really means, even at a young age. It can teach you the beauty of gratefulness for even the most basic aspects of life. Having a sibling with special needs enlarges your heart with a fierce and protective love, a love that we need more of in this world.

Tanner is my oldest, Connor was unplanned. But has been such a blessing to our family. He has been such a great brother for Tanner. Tanner and Connor have loved each other from the very beginning! They play (and fight) together, learn from each other, and push each others limits. It's so fun to watch. Connor puts up with all the extra appts, and therapies, and does so with a smile! He doesn't see Tanner as different. He sees Tanner as his brother!


Day # 29 

Spina Bifida is one of those roads. A hard road at times, but beautiful destinations and futures. So many awesome people that we've come to know along the way. We support one another, and that's what love is. To all those out there, you know who you are. Thank you for your friendship, love, companionship, and for simply caring. 

Day # 30 

Day # 31

Having a child born with Spina Bifida does not make me any stronger, wiser, or more courageous than any other mom. I've simply learned to adapt to our new life because I love my child, and well, do I really have another choice?
There is one saying that I've heard often, and am starting to dread hearing. "God only gives special kids to special people." With all due respect, I am beginning to dislike that saying. I smile on the outside, but scream on the inside. I know that people mean the best by it, but its not what moms of special needs kids need to hear. And its also not the truth. The truth is that God can give anyone, even you, a child with special needs.

I never thought it would happen to me. But it has, and I wouldn't ever change it!
So next time you see a special needs child out with their family, remember this.
"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."

Monday, October 20, 2014

Spina Bifida Awareness entries 11-20

Spina Bifida Awareness Day #11

Spina Bifida brings out strengths and attributes in yourself and your child that you didn't know either of you possessed. Spina Bifida has also taught us that we are stronger, and have the strength to do what is needed.

Spina Bifida Awareness Day #12 - Each year approximately 1500 babies are born with Spina Bifida!! My son, Tanner was one of those 1500 born in the year 2008. Spina Bifida is one of the most common debilitating birth defects, yet no one really knows what it is. To me, that is sad. Spina Bifida needs more awareness! More knowledge, and less ignorance.

Tanner says "Spina Bifida is wheelie awesome! Get the word out"

Spina Bifida Awareness Day #13
A 2012 synthesis of 17 international studies estimated that once prenatal diagnosis is made, spina bifida has an abortion rate of 63 percent. AN ABORTION RATE OF 63%! This includes late term abortions.
We learned of the possibility of a spina bifida diagnosis at my 5 month (22 weeks) ultrasound. We visited the high-risk doctor for confirmation at 24 weeks and were given the option to terminate, and told "Your baby boy has Spina Bifida, he will have no quality of life, when would you like to abort?" Abort my sweet, courageous, loving, awesome Tanner? NO WAY! We chose LIFE, left and never went back. I still avoid driving past that Dr's office.
An estimated 166,000 individuals with Spina Bifida live in the United States, most of which are adults. This is likely due to advancements in prenatal testing which give parents the option to terminate the pregnancy. To the end the LIFE of a very living human being just because they are a little “broken.” To me that is the most selfish, sad and cruel thing imaginable!!

Spina Bifida Awareness Day #14
Even people born with Spina Bifida can do and do amazing things! As Aaron Fotheringham "Wheelz" would say "You are only as disabled as you think you are"
Practice makes perfect.  Try, try, and do it until you can.  What a great role model for my son!!

Spina Bifida Awareness Day #15
It's not hard to love someone with Spina Bifida 

Spina Bifida Awareness Day #16
Going out with Tanner, we get looks, stares, odd comments, and ignorance. Sometimes we are lucky and get a parent who lets or encourages their child to ask questions. 
One time when we are at Costco, a child came up and asked questions. Followed by his mother saying "I hope its ok that he is asking. I try really hard to teach my kids that everyone is important, no matter how they look, or what their abilities are." 
That mom made me cry that day, but in a good way. And she got a hug. Such a breath of fresh air! 
Please, please, please teach your kids that children like my Tanner are not scary, that they are important just like everyone else. And that wheelchairs give kids like Tanner more freedom. To Tanner his chair is FUN.

Spina Bifida Awareness Day #17 
Spina Bifida doesn't stop anyone from achieving goals, reaching for the stars, and doing great things! 
Tanner received 2 awards today. Perfect Attendance and the Scholar Honor Roll Award (the hardest award to obtain at his school, and he was the only one to get it in the whole kindergarten) There are 5 classes.  
This year has been a hard transition for him, but he is rising above, and I am so proud of him!

To get the award he had to achieve the following - 100% attendance - less than 2 or less tardy's - Exceeds Standards on report card average - Leadership in the classroom or for the school (Paideia Academy)

Spina Bifida Awareness Day #18
Spina Bifida is labeled a lot of things. But it is also these things!

Spina Bifida Awareness Day #19
A neurological complication associated with Spina Bifida is Arnold Chiari II malformation—a condition common in children with myelomeningocele (the type of SB Tanner was born with) —in which the brain stem and the cerebellum (hind brain) protrude downward into the spinal canal or neck area. This condition can lead to compression of the spinal cord and cause a variety of symptoms including difficulties with feeding, swallowing, and breathing control; choking; and changes in upper arm function (stiffness, weakness). We have been blessed that Tanner only has a mild form of Chiari, and that the only effect its had on him so far is a sensitive gag reflex.
A lot of children with SB aren't so fortunate and some have feeding tubes, trachs and other complications.

Spina Bifida Awareness Day #20
How we react to questions, looks, and ignorance shows our SB kids how to react. I try really hard on a daily basis to treat others with kindness too.

Monday, October 13, 2014

Wheelchair Basketball

This year, Tanner is FINALLY big enough to play wheelchair basketball!!  He was a bit comprehensive at first, but after going a few times he is really enjoying it and looks forward to going.  He is on the prep team for the youth Phoenix Suns team.  He has practice once a week, every Monday after school.  And there is a weekend tournament in December.  He really knew nothing about basketball when he started, and is learning so fast!  
I'm happy that he has found another sport besides WCMX that he likes to play.  

Pictures to come!  

Friday, October 10, 2014

October is Spina Bifida Awareness - Days 1-10

Each year, every October is Spina Bifida Awareness.  I am doing a post about Spina Bifida every day on Facebook.  Here are the 1st, 10 entries.

Day #1 - We found out that Tanner would be born with SB at 24 weeks. I will never forget that day, it will forever be etched into my mind. I still become teary eyed thinking about it. When we found out, I had no idea what SB even was, and that alone terrified me. The first thing the doctor said to us was "Your baby boy has spina bifida, he will have no quality of life, when would you like to abort??" NO parent should ever be told that! We chose life, and that Dr. can stick it where the sun don't shine!
I'm so thankful that although the rest of the pregnancy was filled with worry, I was able to prepare myself for what may lay ahead. Tanner is SO much better than I ever envisioned him to be! No quality of life?? I think not! Tanner is so full of LIFE!

 The date on this picture is off due to new camera and date wasn't updated at time of photo.  It should be 12/15/2008

Spina Bifida Awareness day #2 - Nothing causes or prevents Spina Bifida. Let me say that again.... NOTHING!! I took prenatal vitamins for over a year before getting pregnant with Tanner. Yet, he was born with Spina Bifida. There is no reason why it happened, it just did. And I wouldn't change him anything!

Spina Bifida Awareness Day # 3 - For me as Tanner's mom, there are hard days, but also AWESOME days too! Finding out while I was still pregnant that Tanner would be born with spina bifida made for a worrisome pregnancy. I cried every day. BUT it also gave me the opportunity to go to consults, and select his doctors before he was born. AND I had the time to prepare myself for what I knew may lay ahead. 
Tanner has taught me so much about celebrating each moment, no matter how small. That although life is tough, we are ALWAYS stronger. That everything is possible, and things can be done in MANY ways. 
He is truly my Hero. I love him so much!

Spina Bifida Awareness Day #4 - Perspective & Spina Bifida. We could be so bitter about the challenges that come along. But we as a family, strive to find the joy in little every day things.

Spina Bifida Awareness Day #5 - Other Spina Bifida kids and adults, just like my Tanner. All our friends! All those born with Spina Bifida have just as much fun as anyone else!

Spina Bifida Awareness Day # 6

Out of every 1,500 births 1 child is born with SB. SB is one of the higest aborted rates (which is beyond sad, because I love my Tanner and can't imagine life without him)
Having a child with Spina Bifida has taught me this.

Spina Bifida awareness Day #7
Whether or not Tanner can play the way other kids do, is a question I am asked a lot. He is a kid, of course he can play! He loves the same kinds of things, and loves to play with others. He is very social. 
Curiosity is OK. Parents please don't shush your kids or lead them away when they want to talk too or play with a child that may have some differences. Tanner uses a wheelchair full time outside of our home, or he crawls. Just because he does some things differently, does not mean he cannot do them at all.

Spina Bifida Awareness Day #8
This blog explains it way better than I ever could. (click on link)

Spina Bifida Awareness Day #9 
The human nervous system develops from a small, specialized plate of cells along the back of an embryo (called the neural plate). Early in development, the edges of this plate begin to curl up toward each other, creating the neural tube—a narrow sheath that closes to form the brain and spinal cord of the embryo. As development progresses, the top of the tube becomes the brain and the remainder becomes the spinal cord. This process is usually complete by the 28th day of pregnancy. But if problems occur during this process, the result can be brain disorders called neural tube defects, including spina bifida. This means that before a woman even knows she is pregnant the “damage" has already been done. The mother typically does not learn of the condition until her 20 week ultrasound. Early ultrasounds around 8-10 weeks which confirm the pregnancy and establish gestational age will not pick up on the defect. Prenatal testing which can indicate "risk" of Neural Tube Defects including Spina Bifida are offered around 16-18 wks gestation. If a "risk" is suspected a follow up ultrasound is preformed. Many mothers decline this testing as there is some risk involved.
We found out there might be a chance of Spina Bifida when I was 22 weeks pregnant with Tanner, and found out for sure at 24 weeks. I was devastated and turned to God. Without that trust and comfort, things would have been so much harder to handle.
"With men it is impossible, but not with God: for with God all things are possible." - Mark 10:27

Spina Bifida Awareness Day #10 
Being Tanner's mom has never been hard. Yes, there are extras, heartache, stress, confusion, worry, and struggles. But there is also a whole lot of LOVE. 
I am so proud of the boy he is becoming!

Update on the boys

So the last time I posted on this blog was Aug 2013.  Pretty sad, but at the same time it proves that I live a busy life with my little family.  Tanner is going to be 6 on December 15th, and Connor will be 3 on November 17th.

Tanner is loving life.  He is really into WCMX (wheelchair skating).  He LOVES going to the skate park!  Loves the ramps and the thrill!  He is learning more and more each time we take him.  We have been to more in California for WCMX clinics.  Wish we could afford to go to more.  He has met some amazing kids and adults, all into WCMX.  We were able to get him a WCMX wheelchair this past May, with help of fundraising.  He calls it his "Superman Chair"

He is now in Kindergarten at Paideia Academy and is really thriving.  He is the only child there that uses a wheelchair so it has been a learning process for all involved.  But so far it has been a positive experience.

Spina Bifida, Hydrocephalus, and Chiari malformation wise, his last surgery was in December 2013 on his left foot.  He was born with clubfeet and it was reoccurring on his left foot, so that had to be fixed.  He has now had 8 surgeries in his life.  We also started cathing for social continence at school.  He has done quite well with that transition.   He does have a tethered cord, but is non symptomatic right now.  That is being watched, and he will most likely need spinal surgery in the future to release his spinal cord.
Tanner was so excited that his Orthopedic Surgeon gave him a Candy Cane cast, just in time for Christmas!

Connor is my rambunctious, fiesty, little ham.  He finds humor in everything, loves to laugh, and gets into everything!  He walks, runs, jumps, climbs, and gives this mama a heart attack at times.  He jumped off the couch to the tile, and got a hairline fracture in his foot and had to wear a boot for awhile. His favorite color is blue, and he loves to give cheezer smiles.  He really is my sunshine!

Tanner and Connor have so much fun together.  They are so good for one another.  Connor has the adventurous spirit that Tanner doesn't.  And Tanner has the sensible side that Connor doesn't.

They have loved each other from the very beginning.