Calling All Spina Bifida Friends and Family!!

October is Spina Bifida Awareness Month.

For many, SB Awareness means promoting possible preventions and making sure every woman of child bearing years is on the folic acid train. Which is fine in some ways, but not really to us!  You see, Tiffany and I were amongst those that did everything right during our pregnancy and we still have a child with Spina Bifida. So many times we see those campaigns and ads, and to us, they feel like they are pointing fingers. That is NOT what Spina Bifida Awareness is about!

To us, Spina Bifida Awareness is far more positive and inspiring! The darkest part of our Spina Bifida journey was the days and weeks after diagnosis. There are SO MANY unanswered questions, so many unkowns, and so much false information given (even at times by doctors!) that this time was a corridor of darkness. Our hope is to bring inspiration & hope to those walking in that corridor. We hope to share the knowledge that people with Spina Bifida and PEOPLE with wonderful, full, blessed lives. Our prayer is to bring HOPE to each person, hope that even though this is not the path you would have chosen per say, it is a path worth journeying on.

To do this we need the help of our Spina Bifida family, and this is where you come in!!!

Each day of October we want to share a story of hope, inspiration, validation, overcoming difficulties or accomplishing victories from our Spina Bifida family. Also, we would each like to do a "Day in the life of" feature, once a week on her blog! (BTW, if you don’t know us, then you might not know this, but just living a life that SB touches, makes you part of our SB family!) We would LOVE to have you send us a story and a picture to go along with it that you think would further this cause of Spina Bifida awareness. Each day  of October we will post one, and through this project pray, we bring the awareness that goes so much deeper than folic acid and prevention (and please hear us, those are important, but they are not the whole picture!)

If you would like to be part of this project please send an email to simplysoares@att.net or trw0224@gmail.com that includes:

~Your name, and a little bit about how Spina Bifida touches your life (Do you have it? Are you a parent of a SB child? Are you a Grandparent? Does someone with SB touch your life regularly and you feel lead to share?)

~The story you would like to share.

~A picture or a few pictures to accompany the post

~A link to a personal blog or web site if you would like it included with your story (no product or sales sites please!)

~An email for us to contact you at.

We would love to hear from ANYONE whose life is touched by Spina Bifida. We want to include as many views as possible. Are you an adult with SB? Are you married to an individual with SB? Are you the coworker, pastor, employer or dear friend of someone who’s life is touched by SB? Are you the grandparent, aunt, uncle or cousin of a child with SB? Are you the sibling of someone with SB?  We would love to hear your story! I think you get the picture… We want to hear it all!

If we are blessed enough to receive more than 31 stories, we will continue to feature the stories on our blogs, weekly until they have all been told!

These stories will be featured on SimplySoares.blogspot.com and atalw.blogspot.com….. until they have all been told! (and how cool would it be if this just went on and on and on??)

Please participate with us! We would love to hear from you!

-Gretchen Soares & Tiffany Whalen!

First Tee Fun!

Our family LOVES our local First Tee program!!

We have been participating for the last 3 years, and the kids really enjoy it. 



May 2011

I like that the kids are learning core values in addition to the game of golf.

May 2011

I also like how small our local program is, so the kids get LOTS of assistance in their game, and positive adult attention from all of the coaches.

Sept 2010

I also LOVE how well they always integrate Nathaniel into what is going on. He has played many days in his chair, and they have ALWAYS found a way to make him part of everything. Even on days when he is strong and healthy, the course can get long, but they allow him to ride in the cart when he is tired. It is wonderful to see a program that is not directed at special needs people doing SUCH a GREAT job of accommodating!

It is time for the local program to start back up after a summer break, and to kick off the new season this past weekend was the annual fundraiser and welcome back event. The county wide event was held at our local course, so the kids and I headed on over.

We met the new coaches. The kids and I both had lessons from PGA pros. We had a FABULOUS lunch for only $3 each! And of course, we wanted to see if we won the BIG prize of a family trip to Disneyland. The weather was beautiful (a first for that week I think.... it was sooooo foggy last week!) and we had lots of fun meeting new friends.

The lunch and drawing was at the end of the program, and the suspense was getting to the kids. Right when I thought they were going to LOOSE it, Audrey's raffle number got called. You will never believe what she won.....

Can you believe it???

I didn't take my camera to the event, and then my daughter wins a brand new set of golf clubs WITH a bag, and everything she needs to play golf! Amazing....

Nathaniel has clubs, but he is left handed, so Audrey can't use them. And Audrey just started playing a year ago. She BEGGED for club for Christmas last year, but I couldn't afford them. Now she has a full set of her own (minus the putter... they said we should pick one out that fits her)! God is so gracious!

Now I guess I need to figure out how we are going to fit the new time for First Tee into our week :)

If anyone local wants the new schedule, let me know! I would be glad to hook you up, and see you and your kids out there with us!

Celebrating Taylor

In our family we have a tradition of going to the cemetery where Taylor's grave is to celebrate her on her birthday.

In recent years, Audrey has taken to planning these birthday parties, and this year she did well again!

Audrey helped me bake a cake for Taylor, then she wanted to write messages to Taylor on the cake. I thought it was a cute idea, so we went with it.

Audrey took her writing very seriously...

Nat on the other hand was annoyed to be writing on the cake... he just wanted to eat it!

Sweet messages to Taylor...

Then we all had some cake!

Audrey did a great job of planning Taylor's special day. We had great conversations as a family, we enjoyed some healing time and we had some yummy cake. I really treasure these times, where my kids and I can feel safe talking about their sister that lives in heaven. I feel so much healing and peace in these moments..

Happy Birthday Taylor!

Happy Birthday to my Precious Angel Taylor!

We love you and miss you!

Missing Taylor

You know when they tell you time heals all things?

Well, they LIE!

13 years ago I headed into the Labor Day weekend with plans of relaxation, getting a few things done, and celebrating my brother's birthday. Little did I know that I would NEVER feel that carefree about Labor Day weekend again. I just can't. Even if I am consciously thinking about it, I just get the blues that I can't shake this time of year.

You see, 13 years ago the Friday of this weekend was the 4th, my baby brother's birthday. We all hung out together at my parents house. I was hot, tired and my feet hurt but I just wrote it off as being 36 weeks pregnant. After all I had just been to see the doctor on Wednesday and the the baby and I were both fine. So it was just the silly heat wave we were having and third trimester yuckies I was feeling. We had a nice time celebrating Grady, but I never could shake the yuckies, so I headed home to rest.

The next day I couldn't sake the feeling that something was wrong. I even called the on call OB twice about how I was feeling and the fact that my feet were so swollen that I couldn't get shoes on. I was told it was the heat and to rest. Finally mid afternoon I got my handy "What to Expect When You are Expecting" book out and tried to problem solve. The only thing that I could find that explained how I was feeling was under the section for

Preeclampsia, all of the symptoms matched up except for the high blood pressure. At my appointment a few days before my blood pressure had been fine.

 

 Finally, I couldn't shake the feeling any more and I remembered that our local grocery store had one of those machines that took you BP for you, so I had my mom take me down to the store. The first time I let the machine take my BP, I thought the machine was broken. I asked the pharmacist to come over, and when the machine took my BP a second time the pharmacist said he was going to go call an ambulance. I assured him that my mom was in the parking lot and we would go straight to the hospital. My BP at that time was 240/190. I was latter told that I should have been having seizures at that point.

 

The next few hours were straight out of the worst horror film ever made, and they play over and over in my mind, but I am going to spare you the horrid details! By 9pm Saturday September 5th, 1998 I was given the news that NO mother ever wants to hear. My precious child had died while I still carried her. I was 36 weeks pregnant, she was totally viable to life, yet she had no heart beat. The worst nightmare of my life had just begun.

 

The next 24 hours were touch and go for me. Many times I just didn't even have the will to go on, the vicious disease of Eclampsia was trying to take my life and I just didn't care. If my precious child couldn't see this earth, then I didn't want to be here either. Honestly, only the trained medical professionals and the prayer warriors covering us in prayer that kept me alive, because I just did not care. But they did and God had plans for me, so here I am.

 

At 9:57 am on September 6, 1998 Taylor Ann Soares was born. There were no cries as she entered this world and took her first breath. She would never take that breath. There was no joy or smiles as she was born, only heart wrenching weeping and sorrow beyond words. She was beautiful. She was precious. She was already at home in Jesus's arms and she took a HUGE chunk of my heart with her.

 

Tomorrow is my precious daughter's 13th birthday, and the pain is still so acute. I still feel like a piece of my heart is missing. My frustration with the Lord for taking her is still there some days. And I still weep for her often. Actually, I am sort of amazed that my keyboard is even working right now with as many tears dripping on it as there is!

 

Seldom a day goes by that I don't think of Taylor, never a family moment escapes that I don't wonder where she would fit into our family. Would she be hyper and love kids like Bri? Would she be a diva and love to dance like Josie and Audrey? Would she be a charismatic social sports freak like Nathaniel?   Would she love to sing like all of them? Would she have the tender heart for Jesus like Audrey? I constantly wonder how she would fit in with all of the kids. And I am sure that it doesn't help that there is that nice gap right between Josie and Nathaniel that is all Taylor's...

 

Just last week I was reading an amazing book (it's a really easy read and I suggest it for EVERYONE!) called Heaven is for Real . It is a story of a three year old that really touched my heart. In one part of the story the little boy is talking to his mom about a child she miscarried. The little boy tells his mom about seeing his sister in heaven and playing with her. I just cried and cried through this part. I KNOW that some day, I will dance in the streets of heaven with BOTH of my daughters AND with my son, who will no longer be limited by Spina Bifida. I KNOW this in my heart, but reading in from the words of a three year old? It filled me with hope, and a deeper yearning to be in heaven NOW. There are just those moments that I want my children together in glory NOW. But, as hard as it is, I will wait on the Lord and his perfect timing.

 

I am sure I have rambled on enough for now but I just wanted to share...

To share the pain and grief in my heart.

To share why I have tears running down my face a lot recently.

And to share why I have been buried in my bed for the last few days.

For my heart is broken, and I am grieving..... Still.

 

And if someone tells you the pain goes away.... don't believe them!

 

Audrey's Bear Hug Award!

At our school, we have weekly awards called the Bear Hug.

Each week a student from each class is recognized for something they excel in or a great character quality that they show.

This school year Audrey was awarded the Bear Hug in the FIRST bear Hug assembly of the year!

Audrey personified the word of the week (caring) and was given an award for it!

Ironically, this is the SAME award she got last year... guess her genuine heart shines through at school too!

I am very proud to have such a sweet and caring daughter, and that others see that quality in her too! Even teachers who have only known her for a week!

At the end of each assembly the principal takes a group picture of that week's winners, and the pictures are displayed all year long in the front office. Such a sweet tradition!

And I always try to get a picture with our family winners and Mr. J.... the world's greatest principal!