So I guess the weather in Denver reads my blog! We woke up to snow on the ground yesterday. And then today was sunny and warm. What is this place?!?!
Sunny or snowing, this place we call Denver houses two very new and very cherished friends of ours. I guess they're not so new anymore. But these two friends were the first special needs Super Mommies that guided me out of the darkness and into this new special world. There have been talks of g-tubes, seizures, movement, stem cells, therapies, and the like through facebook, email, and the on the phone. We've discussed guilt and grief. I've shared troubles and triumphs and rejoiced in the smallest and largest obstacles our babies have overcome. These two friends gave me stepping stones and shared what they had learned so I could find strength to advocate for my son and learn to live this new life.
I know I've mentioned them dozens of times. But we finally had the pleasure of meeting today! All three of us. All three of our special babies. And we all met in a "special" place called Casa Bonita. I'm not going to say why this place was so "special" but just know that there were cliff divers and gorillas involved. I'll leave it at that.
We met at noon for lunch with our kids in tow. Our brave little souls that brought us together all in their modified chairs, each one in and out of awareness of what this meeting of the moms actually means to us. I clumsily pushed Christian in his stroller through isles of waiting area surely meant for busy days. Lola was in her carrier slung over my free arm while I navigated Christian in his chair, bumping into all kinds of objects within a 2 foot radius of the moving stroller. After ordering food we went to be seated, hopefully somewhere accessible by our brood. Usually, I would get a little warm in the cheeks wondering if our seating could be accommodated.
But this time...this time I wasn't the only one that had a child who needed special seating. I wasn't the only one who needed extra room. This time I wasn't the only one with a special needs child. There were THREE of us Super Mommies with our Super Babies right there with us. I'm sure we were a sight, but it didn't matter because we were there to stay...for almost FOUR hours!!!
It was an awesome time and all the kids seemed to fair pretty well. Christian tasted honey and lemon wedges. I had about four Cherry Cokes and I didn't want the lunch to come to an end. But, alas, there are lives to get back to and Christian had ABM therapy.
Here are some pictures of our excursion...
Super Mommy Jenny with Super Baby Cici
Super Mommy Pam with Super Smiley Big Girl (Not a Baby), Makenzie
Left to Right: Cici (she's got something to say), Makenzie (there's something way more interesting over there), and Christian (a picture looking into the camera, few and far between).
My little guy.
All of our babies different, and yet, the same. They are brave little souls that fight every day to move, stay healthy, and just be.
I received the following story from a list serve I'm a member of. It was right after our lunch and reminded me of our kids - our brave little souls.
The Brave Little SoulBy: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.