"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

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.

Friday, December 13, 2013

Tanner's Leg Surgery

Tanner's left leg and foot have been rotating inward for awhile now.  We have tried derotational straps, twister cables, higher bracing with a KAFO (Knee Ankle Foot Orthodic), and nothing seem to correct or help the issue.  So on December 13th 2013, Tanner had surgery on his left leg. 
He was in the hospital for 2 days for observation.  Tanner has quite a time waking from anesthesia, so they watch him close.  

Tanner was completely and utterly BRAVE before the surgery.  All smiles, and no tears. 

His cast was split to leave room for swelling and lots of padding.  He ended up with 2 pins in his foot. 

After a couple of weeks, more casting was added to close the gap a bit.  The Dr started the wrong way, so Tanner ended up with a crisscross cast, instead of it being striped.  He didn't mind, he thought it was cool!  

Tanner had the cast on for a total of 8 weeks.  He was so done with it when it was time for removal. 

Look at all that padding!  There were also foam pads on the side and top of his foot to protect the pins. 

The pins were removed the same day.  This is one occasion where I am very thankful that Tanner has no feeling in his foot.  Because otherwise I'm sure it would have been pretty painful!  I couldn't even watch!  

Tanner's foot is so straight now, and he loves his "wheelie awesome" scar! We tell him that his scars are marks of his bravery.  

Friday, August 16, 2013

Remembering my Dad

Really missing my Dad today. It's been over 3 years since he went back to heaven, but I miss him just the same. Watching this video of pictures brings back so many memories. I


Friday, July 19, 2013

The Invisible Mother

t all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I’m on the phone and ask to be taken to the store. Inside I’m thinking, ‘Can’t you see I’m on the phone?’
Obviously not; no one can see if I’m on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I’m invisible. The invisible Mom. Some days I am only a pair of hands, nothing more! Can you fix this? Can you tie this? Can you open this?? 
Some days I’m not a pair of hands; I’m not even a human being. I’m a clock to ask, ‘What time is it?’ I’m a satellite guide to answer, ‘What number is the Disney Channel?’ I’m a car to order, ‘Right around 5:30, please.’
Some days I’m a crystal ball; ‘Where’s my other sock? Where’s my phone?, What’s for dinner?’
I was certain that these were the hands that once held books and the eyes that studied history, music and literature -but now, they had disappeared into the peanut butter, never to be seen again. She’s going, she’s going, and she’s gone!
One night, a group of us were having dinner, celebrating the return of a friend from England . She had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when she turned to me with a beautifully wrapped package, and said, ‘I brought you this.’ It was a book on the great cathedrals of Europe. I wasn’t exactly sure why she’d given it to me until I read her inscription: ‘With admiration for the greatness of what you are building when no one sees.’
In the days ahead I would read – no, devour – the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: 1) No one can say who built the great cathedrals – we have no record of their names. 2) These builders gave their whole lives for a work they would never see finished. 3) They made great sacrifices and expected no credit. 4) The passion of their building was fueled by their faith that the eyes of God saw everything. 
A story of legend in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it And the workman replied, ‘Because God sees.’ 
I closed the book, feeling the missing piece fall into place. It was Almost as if I heard God whispering to me, ‘I see you. I see the sacrifices you make every day, even when no one around you does.
No act of kindness you’ve done, no sequin you’ve sewn on, no cupcake you’ve baked, no Cub Scout meeting, no last minute errand is too small for me to notice and smile over. You are building a great cathedral, but you can’t see right now what it will become.
I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree. 
When I really think about it, I don’t want my son to tell the friend he’s bringing home from college for Thanksgiving, ‘My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for 3 hours and presses all the linens for the table.’ That would mean I’d built a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, he’d say, ‘You’re gonna love it there…’ 
As mothers, we are building great cathedrals. We cannot be seen if we’re doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible mothers.