Sunday, August 5, 2012

big ol' ugly cry

I like to pride myself on being a pretty positive person


every now and then I need a good ol' ugly face cry in the shower.

Yesterday was one of those days.

It snuck up on me out of no where.

I was cleaning and putting away THIS magazine and opened it up to the article and winning photograph of my sweet Bubba.

When I started going through my photographs I naturally went to the ones of my daughter dancing first. That would be the obvious choice, right? As I sat here and gave it more thought I decided to go a different way with my entry. I have a feeling that most entries will be of obvious, beautiful, and even difficult talents, well, not mine. When my, 11 year old, son was born we were told that he would never walk, talk, or do much of anything in his, what they believed to be, short life. I watched as my sweet little baby fought to learn every basic skill that comes naturally to most. He did not even start sitting up on his own until he was three years old. I remember crying as I placed my little boy in a shopping cart seat for the first time. Something as simple as holding his head up, sitting without help, or swallowing were quickly becoming amazing new talents in our home. We cheered each time a new skill was learned and were amazed at his constant desire to prove the doctors wrong despite all of the many obstacles that life placed before him. I will never forget the day that I turned down the long, cold hallway at Collin’s school to see my son doing the unthinkable; he was taking a few steps. I stood there with tears in my eyes as his teacher helped him to show off his newly learned talent. Later that year he was honored by our school district for being “the most inspirational’ student. As they described his difficult life I watched my inspiration walk across the stage in his little tux as he showed off not only his huge smile but his new found talent, walking. Everyone in the room clapped with tears in their eyes. He was shaky and only managed to take a few steps but he made it to John Wooden, where he got his award. It was an amazing day for this mother. I was able to see my child honored for his talents, a day I thought would never come. I knew that he would not play a musical instrument, sport, or be in academic decathlons, so I had pushed those hopes back, way back. It wasn’t until that night, as a very pregnant mommy with our second child, I heard my sweet little boy being honored for his strength, amazing attitude, and ability to never give up. I realized in that moment that he might not play football, sing, or play chess but the talents that God has blessed him with are much greater.

This got me thinking.....
and missing these kind of moments.

Bubba has never been able to stand on his own
but if he had something to hold onto he did great!

Bubba fought so hard to learn this skill.....

and inspired so many while doing it.

I miss his BIG smile, face thrown up to the heavens,
as he didn't watch where he went and took out everyone's toes as he RAN.

The hard reality is that Bubba has lost this skill and will more likely than not never get it back.
His body is too weak, too tired, and too old. His hips pop out, he has weak bones becuase of the arthritis, and his muscles have taken a hit over the past year. You have to remember that pre mature aging is part of TTD, a crummy part.

So, as I sat there reading the article, my words, on how proud I was of Bubba being able to walk it hit me... like a ton of bricks.... He fought so hard for this and than it was just taken away. Later I was at the store with my kidos and a frustrated young mother watching her toddler run around the store said "Oh, he just drives me crazy why does he have to be running around the store like that!!!... I just wish he coudln't do that!!!!" She looked up at me and my sweet boy in his wheel chair and I smiled at her. I don't think she had a clue what an impact her words made on me. I wanted to grab her shoulders and shake her and say..." Yes... this is HARD... this is a hard time to be a mother but LOVE it... LOVE every second of it!!!.... be grateful that you have a child you have to chase around the store!!!! .... G"SSSSS don't you see how lucky you are!?!?!?" Ok, so none of these words came out of my mouth... I just smiled and said "this age can be a hard one can't it??" Insert the biggest smile I could muster up. Then I walked away. Later I had my BIG OL' UGLY face cry in the shower. I miss it... I wont lie.. I MISS seeing him walk around so much. I CRIED... and cried ... releasing all of the anger.

 BUT here's the thing as much as I miss watching him walk I know it could be worse. I have friends that would give anything for what I have now. They would give anything just to have one more day with their child.

"If you change the way you look at things, the things you look at change."

So, tonight when you tuck your babies into bed be grateful... When your child runs away from you at the store, be grateful.......... when your child tells you I Love you, be grateful........when you watch your child swim in the pool, be grateful.......when you don't have to hook your kido up to machines, be grateful ...... when you watch your child bite into a big ol' cheesburger, be grateful. These might seem like little things but to some of us.... these are huge and we would give anything to see or hear these things from our children.

{Oh, and in case you are wondering... I am double grateful when I see these things from Regan becuase I know how special they are! ;-) }


Rachel said...

Sitting here completely choked up.

Aren't we all born with an innate sense of fairness? As kids - so attuned to how good and not-so-good things are doled out?

It makes it hard to accept any kind of un-fairness.

I am so thankful for the gifts that God has give Bubba. For the unbroken and joyful spirit. For the ability to bring joy to those hard times. For the tenacity and the desire to achieve those talents.

While asking God to heal and restore your precious son, I cannot help but be reminded that Collin isn't done. What his legs find harder to do, is a talent that we are sad not to see right now... but God has done, and IS DOING more in Collin.

(I believe with all my heart that God does amazing work in the hearts of children. I believe that He absolutely speaks to them and that it matters not whether those words can be repeated back to you. Where do you think his joy comes from? :)

Because I can't write anything that makes any of this less painful (it was hard to read it, and my Momma's heart broke with yours), I am praying that God will SHOW YOU those talents that He is continuing to work in your boy. That God will prompt you to notice and He will catch your eye at the perfect time to see that He delights in your boy.

And you. He delights in YOU. I am before His throne asking for a special blessing for you. For joy that comes from having an eternal hope, and a peace that KNOWS He is in control and loves Collin even more than you can imagine.

Much love.

Tara Rhodes said...

I don't recall us ever meeting in person, although the last time I came to visit many years ago I did see you from afar. I grew up around your husbands family, Bryan and I were together from nursery until we graduated from primary, and your amazing father in-law was our bishop twice as I recall. You married into one amazing family, I love them! I have followed your story through your family from the start, and am in awe of your strength. When I read this last blog one of my favorite poems came to mind, I don't know if you have ever heard it, but I thought it might help you as it has helped me over the years.

before He sent his children to earth
gave each of them
a very carefully selected package
of problems.

He promised, smiling,
are yours alone. No one
else may have the blessings
these problems will bring you.

And only you
have the special talents and abilities
that will be needed
to make these problems
your servants.

Now go down to your birth
and to your forgetfulness, know that
I love you beyond measure.
These problems that I give you
are a symbol of that love.

The monuments you make of your life,
with the help of your problems,
will be a symbol of your
love for me.

Your Father.

Jenny said...

I think you have us all doing the ugly cry right along with you after this post! Thanks for putting things in perspective for me. Praying for you and your family.

Foursons said...

Rachel's words are impossible to follow, but please know that your words have made me appreciate my wild little boys even more than I already do. Huge ((hugs)) and prayers for you and your entire family.

Susan said...

How valuable can a child's life's accomplishments be? You, my friend, know the true and complete answer. The same accomplishments for Bubba that brought you tears of joy now bring you tears of heartache as they diminish and disappear. But you've had that flash of greatness borne of hard work, persistence, and courage that make Bubba's accomplishments the equal of anyone on this earth, disabled or not. He has been truly amazing! You will always have that memory of those mountains conquered, those unexpected heights achieved while Bubba lives his best life possible. And you, his family, are the reason he is living his best life possible. It would be unreasonable to expect you not to cry over the loss of previous gains or the pain he suffers when things go downhill, and to ache when you notice others wrapped up in their oblivion of parenting children without challenges. The thought of Bubba losing ground is something that makes all of us cry with you. You are not alone in your sadness over this. But know that you are surrounded by our prayers that God will see you through any and all future challenges, and that his love will be evidenced by the help and compassion of all those who love you and love Bubba. Your family has a big spot in our collective hearts. We hug our own children a little tighter, understanding the blessings we've been given without having earned them. Through your blog, you and Bubba have taught us how to respect our gifts of life, however they are presented to us, with challenges or without. The lesson is to live the best life possible. Bubba's a champ at that. He's equal to ANYONE at living the best life possible.