Summer Times

This summer we were very busy as a family.  Tanner is now 6.5 and is getting more and more independent using his wheelchair.  Connor is 3.5 and is growing like a weed.  Potty training is going well, but boy is he stubborn!  Hoping he'll be good by the time he is 4. 

The summer started off with a bang for Tanner.  He was awarded a grant by Challenged Athletes Foundation to use for traveling expenses to go to adaptive sports events.  The end of May was the first one of these!  Tanner and I traveled to Santa Monica, CA where he got to go adaptive surfing!  He was scared at first but did it anyway, and ended up loving it! It was put on by a non profit called Life Rolls On.  If you don't know who they are, check out their website -  http://www.liferollson.org/

Such an amazing organization and the bunch of volunteers that helped Tanner were awesome!  This mama was nervous, but it was so exciting to see him surf. 

The first 2 weeks in July, the boys and I visited Utah for Tanner's yearly Shriner's appt in Salt Lake City, Utah. All went well during that appt, his legs and hips look good. So we will go again next summer. We always stay a couple of weeks and visit family.  We also saw some friends, the Paxman's and that is always fun! More pictures from that to come!  

Near the end of July, Tanner and I went to California again for another event.  This one also put on by Life Rolls On, called Let's Skate Again.  The crowds were large, and Tanner got overwhelmed. Tanner is still a beginner at the skate park with his wheelchair, but going was good for him. 

This is Aaron "Wheelz" Fotheringham.  He does back flips in his chair, at the skate park.  Tanner aspires to be just like him.  Check out his you tube video's.  https://www.youtube.com/watch?v=U2D6Iy7m7qI  Tanner says he is awesome! 

School started on Aug 3rd. Tanner is in 1st grade now, attending the same school he went to last year, Paideia Academy.  This year started out way different than last year.  Last year Tanner had a lot of anxiety. Enough anxiety that he would vomit at least 1 time a day for the first 3 months of school.  It was a very stressful time for me, but we worked thought it.  This year Tanner has not vomited 1 time since school started.  It helps that he's already familiar with the school, and he has some friends in his class. Including his best friend, Emily.  They tell everyone that they are going to get married someday.  

I'm so thankful that Tanner has a friend that can help him with his anxiety and fears at school.  She's a great kid! 

In a few weeks, we will be going to Huntington Beach, CA for another adaptive surf event!  Tanner is so excited about it!  Then the last adaptive surf event will be in September for Tanner.  Pictures to come later. 

I WISH......

I wish ....   It's something I've heard my 2 boys say over and over about various things.  I wish for a new toy, I wish it would rain, I wish I could have some ice cream.  Most are wishes over silly things, trivial things.
But there is one "I wish"  that absolutely took my breath away when I heard it.  My 6 1/2 year old son, Tanner wished he wasn't born with Spina Bifida.  

Oh sweet, sweet boy.  How I WISH I could make that happen for you.  But its just not in our cards to do so.  I've always hoped he would never wish for that, and have dreaded this day.  The day I knew that would one day happen.

How do you recover from such a wish??  I hugged him and explained that although Spina Bifida is part of how his body works, it doesn't define who he is.  That God doesn't make mistakes, and he is perfect the way he is.  For him, that seemed to be enough for now.  I often wonder what I will say when it comes up again.

Now that his brother, Connor is nearly potty trained, able to run, climb, jump, Tanner is wishing he was more like his brother.  I grew up always comparing myself to others, never thinking I was as good as anyone else.  And now I'm watching my own son struggle with the same thing.  It breaks this mama's heart.

Tanner is an amazing kid.  He is kind, gentle, smart, courageous, strong, empathetic to others, helpful, wise beyond his years, funny, spiritual, profound, a fierce friend, and many more amazing things.  He never gives up, always willing to try new things (even if they are scary),  loves making new friends. He loves telling jokes, and is the greatest story and joke teller ever!

I hope one day that he can see what I see!

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.  

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

SPINA BIFIDA AND MILESTONES 

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 

SPINA BIFIDA AND SIBLINGS 

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."