Sunday, October 13, 2013


3 month hiatus.....

     Needless to say, I'm very happy summer is over and FALL and SCHOOL are in full swing. My Husband has been home all summer, had 2 minor operations and a few serious complications, and so, in a nutshell, I'm totally over "Summer 2013."

     Of the high and lows of this past summer, one highlight was our annual "22q At The Zoo" event here in Atlanta. This is our 3rd time participating in the event and with every year its feeling more and more like a family reunion. Its proof positive that a family can be formed via social media, as moms and dads and families all over the world meet for one day and act like they have know each other their whole lives. It a very comforting feeling to be surrounded by other families that know exactly what you have been through, can give you insight as to where you are going and and support to get through the present day. I am so thankful for my 22q family.

     The highs of the day are obvious... meeting old friends, seeing how the kids have grown, big hugs and celebrating each child's achievements. The lows are deep and painful, as we watched a dear friend of ours walk the zoo in honor of their son that they lost just days prior. I feel sheepish saying it was difficult for me and and my family, as I can only imagine the feelings of this dear family. It certainly was a day that we all hugged our children a little longer, squeezed our spouses hands a little tighter, complained less and prayed more. I'm having difficulty just trying to form into words how bad my heart hurt and still does for my friend and her loss.

In honor of his memory and his wonderful, brave, courageous (there isn't enough words) family, we wore blue ribbons and the family had buttons made as well. If i could think of one word to sum up the day of 22q at the Atlanta Zoo 2013 it would be "BRAVERY." I am going to try my best to share why I feel the way I do:

     Families who struggle with a child who have immune issues are BRAVE. They take each illness with both fists in the air ready to fight. They have spent days in the hospital at their child's bedside. They have prepared themselves for surgery after surgery, while wearing a brave face because their child is watching and looking for comfort. Too many times they have laid their child into the arms of a physician or surgeon, while they pray prayers that many families cannot comprehend. They take diagnosis as something "temporary" because they have seen situations turn around that you wouldn't believe. They have seen children overcome the unthinkable- because their faith has grown into one that can move mountains, and has.

     Families who struggle with Speech, Occupational and Physical delays are BRAVE. Every therapy, every plan of care, every goal, they are there with the highest hopes of seeing 100% recovery. While most families talk about their child only being able to say a few words, They have been waiting till their child was 4 years old to say "I love You." Some are still waiting. While children are going to basketball practice and playing t-ball, they are in an office somewhere working on fine motor skills and e-nun-c-ation. And I speak for all of us when I say: We rejoice with you and your child! And with a brave heart, we cant wait for our child to join you on that basket ball team!

     Families who struggle with behavioral and developmental issues are BRAVE. They have learned to take it one day at a time. They pretend not to notice you and your family staring at them. They bow out of birthday parties early, forfeit weddings and family dinners. They struggle between their desire to make their child happy and making their child socially functional. In the midst of this and other issues, they worry if their children will marry and what will happen when they have children. What about College? Will they go to College? And yet every day they speak into them "One day when you get married" and "One day when you have children" and "One day when you become a rock superstar." Teehee.... THEY. ARE. HOPEFUL.

     Families who struggle with schooling their child are BRAVE. Whether it be IEP's or home schooling, they take the educational bull by the horns. They make no excuses for their child's future and with chests puffed out and authority in their voice, demand the best most appropriate form of education for their child. And they don't apologize either.

     Mothers who struggle in the loss of a dream are BRAVE. When they were young woman dreaming of what our families would be like, they weren't imagining this. They weren't prepared for this. This was the farthest thing in their minds. Even in Her weakest hour, alone, when no one can see... and She cries out to God- angry and feeling cheated, She is still BRAVE. She will pull herself together and face another day, and believe it or not, by the grace of God, you will do so gracefully.

     Marriages that struggle are BRAVE. They are fighting a fight that not a lot of other marriages understand. The burden, the heavy, exhausting, weighty burden of fear, anxiety, depression... there are conversations that take place between husbands and wives that you couldn't comprehend. Its hard for THEM to comprehend. But everyday they wake up and start over, trying harder cause that's what their family deserves, and that's what each of them deserve.

     The siblings who struggle living in the midst of a brother or sister with special needs are BRAVE. Daily they have to take the backseat to their siblings needs. Day and in and day out they will watch their brother/sister demand so much attention of their parents. But even in the midst of that they are learning a type of love that many other children their age cannot understand. The level of compassion that is being developed in them is something that most adults never grasp. They are so, so BRAVE. Know that Mommy and Daddy see you, that they love you so very much and they are learning how to navigate their family in manner that elevates each one of their children, in hopes to help develop them into the man or woman God has called them to be.

To the families that boldly and proudly wake their kids up early....
Put on all their 22q awareness wear.....
Drive into Atlanta.....
Walk the zoo.....
And celebrate their child are....
They are so BRAVE!
To allow their family, in all these struggles, set the platform to raise awareness and hopefully help future generations are so BRAVE! Finding positives in what the world see's as a negative are BRAVE! You know why? Because its a choice. Its a choice that you made, and if given the opportunity, would make again!

     To the families who children are no longer here with us, they are BRAVE. While their child has been made whole and resides in perfection, they are left to bear the scars. Everyday you breathe, you are BRAVE.I cant rationalize why this is the path that has been chosen for you and your families. I find comfort in knowing that this life is temporary and through love of Jesus Christ we will see those babies again. But in this life my heart hurts for those who have suffered loss.
     Don't ever give up. In your weakness reach out. There are people who love you, are praying for you, that think of you daily. Your BRAVERY is a very selective, elite form. Even in the midst of many who struggle, you carry a burden that most of us don't understand. Know there is a world of families who pray for your broken heart to be made whole and to help give you purpose from this unbelievable pain.

(I love ya girl, you know who you are.)

    I'm anxious to see our 22q family at the zoo next year.  Its such a blessing that there is a group of people who have organized this event, worldwide, to help raise awareness for the....
ready for it?.....
 "most uncommon rare disease" ever!
And to be able to laugh at a title like that is BRAVE.