"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

Tuesday, November 18, 2014

Rest In Peace my Maple

My Maple, you were 3 months old when we got you, and 9 years old at death. Born `Nov 3rd, 2005 - Died Nov 18th, 2014. 
We loved you so much! Best friend a girl and family has ever had. We will miss you! So Heartbroken.

 I had to beg Ray to get you in the first place.  Traded a years worth of gifts, I wanted you so much.  You became my best pal, as I knew hardly anyone here in Arizona.  I watched you grow, learn, and love (put up with), and play with  my boys.

You were my best friend.  Loved me no matter what.  Never selfish or judgmental.  You were such a precious gift from heaven and will always hold a place in our hearts and memories.

You were an awesome snuggler.Daddy didn't want you sleeping in our bed, so I would wait until he was sleeping before I lifted you up to cuddle with me.  And then I would put you in your bed when I got up the next morning.  That didn't last long, and you were sleeping in our bed with us.  You would scoot as close as you could possibly get to me or daddy.  I will miss that, and miss your snuggles.  

When you were a puppy you would cuddle with my feet when I ate at the table. You always had to be close to me and were forever under my feet.  I will miss that too.  

Always so full of life, wanting to play fetch or run. Oh how you loved to play ball. You had many favorite balls throughout your life. You were a chewer, loving to chew on many things.  We buried you with your favorite ball and bone.  You never really did grow out of the puppy phase. I will miss your endless energy and joy in life.    

You were always very protective of me and the boys, and very territorial.  But you always loved playing with your buddy, Blueberry (Ray's sister's dog).   The way you would play with Blueberry was indeed comical.  You could turn around so your butt was facing Blueberry and scratch your feet like a bull back and forth, while pushing into her.  So funny!  You loved to wrestle and run with her, and I'm sure she will miss you. 

You loved to lay and warm in the sun.  Always seeking out the warmest spot on on the floor or couch. 

I miss the sound your claws made as you walked or ran across the tile.  Following me everywhere.  You always had to be with me, and I will miss that constant companionship. 

You were never really sure of "Men" that came to our house.  It took awhile for you to warm up to them.  We called it your "men complex".  You even looked at Ray wearily at first.  

You loved to burrow in and sleep under blankets. If there was a blanket around you were under it, especially if we were under the blanket too.  We will also miss that.  

 You were excited about every new toy, big or small. Excited to eat (even things you weren't supposed too). Learning to beg standing on your hind legs.  Wagging your tail so fast it was one big blur. 

I will miss the way you looked at me with so much intensity.  And how excited you were when I came home.  So excited you could hardly contain yourself. 

I miss your barking, the noise you made as you ate your food, the sounds you made while sleeping and dreaming,  the way you growled at only certain people. 

I will miss your kind heart, your unyielding loyalty, and fierce love. 

I will miss a lot of things about the 9 years we spent together.  But most of all, I will miss my best friend, My Maple.  

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.