Welcome back! If this is your first time joining this blog, welcome (feel free to read through past posts)! We are a family with two natural sons who have Down syndrome (Caleb 7 and Joshua 3). In this blog I share some of our challenges and joys during our journey.
There are many times that I wonder where I fit... Most of my friends do not have children with Down syndrome... for those that do, they have ONE child with DS! I feel I don't really relate with "regular" moms, and to be quite honest we are the "worst nightmare" for those who do have a child with DS! Do not misunderstand what I am saying... I LOVE my family! I LOVE my boys! But we are just not like other families... to be honest, we are quite difficult to miss! We rarely just blend into the crowd... there are rare occasions that we can...
Every year the Down Syndrome Association of Greater St. Louis (DSAGSL) has a DS awareness walk in Forest Park - Stepping Up for Down Syndrome (formally The Buddy Walk). In years past we have gathered friends & family and put on our walking shoes to join the thousands of walkers. But, this past year has been full of extra challenges (Mamaw Canines and Aunt Mary Lee going through lung cancer treatment, Frank finishing BSN program & starting CRNA program, and a VERY difficult school year for Caleb), so we were just going to skip the event. A couple friends expressed interest in going so we thought, "Why not? Let's go!" Even after our friends needed to back out we loaded the boys up and headed across the river to St. Louis, Mo. Because this is one of those cherished times that we can just be one of the crowd!
Nearly every year we have gone to the DS walk, or any event that the DSAGSL puts on, I cry... sometimes it is the shear number of people supporting DS, sometimes it is being apart of a larger group or purpose than myself, and sometimes is is just the raw love I have for my unique family!
The day was very hot and humid so the sunscreen was applied and the stroller was unloaded so we could join this thrilling crowd! As we were walking through the parking lot Caleb began to "melt down". Crowds and loud noises can set him into a utter tizzy, but this time he was trying to communicate a great need of his... he was hurting! As Frank looked closer he realized Caleb must have gotten sunscreen in his eyes! Caleb's eyes became blood shot and he was rubbing them with extreme purpose... but to no avail because the more Caleb rubbed the more sunscreen got into his eyes. The pain was more than he could handle and he only way Caleb could express his discomfort was to TOTALLY melt down. By this time Caleb's eyes were so red it hurt to even look at him! Only yards away form the van, we just loaded back up and headed to a pharmacy to get some eye drops.
Frank got some extra treats for our hurting boy, but Caleb was in so much pain none of the usual "bribes" worked... not McDonald's... not swimming... not ice cream... not beads... not candy... not Veggie Tales... not Signing Times... not a movie... not the park. He was REALLY in pain! When the eye drops did not offer instant relief we knew it was time to just go home! No need to push it... when we push our luck we always seem to get knocked down!
Poor Caleb screamed all the way home in unbearable pain... once home we held him down again to re administer eye drops. This time Frank kept Caleb in a "bear hug" hold for a few minuets to make sure the drops had a chance to work their magic, and they did!
Our "Red Eye Trip" was just a reminder that sometimes we must accept our limits (or the limits of our children)! This may seem like a duh kind of statement, but it has taken me a while to accept it. I am the type of person who wants to get the most out of everything I do... stay as long as I can... push myself to the limits... but my kids have taught me that I need to know the limits. That more is not always best!
This time it was a physical pain that made us leave. But, Frank and I are learning the art of calling it quits. We have made it our goal to leave "on a good note" to avoid figurative "red eye" trips (complete hysterics). The kids may be having a great time at the park, zoo, pool, friend's house... when we decide to leave. We want to leave before they are so exhausted that they can not see strait and thus lead to an emotional melt down. Kiddos with Down syndrome can fatigue easier then their peers, thus leading to crankiness and emotional fits for my kids.
So, now I have eye drops in the first aid kit. Hoping that because they are in the car I will not need to use them... but nonetheless they are there if we do! I have also invested in some "tear free" sun screen. Even with all of my efforts there is a chance for another "Red Eye Trip" and when it comes I will wrap my arms around my child and tell him that I love him and that I will try to make it all better! But life sometimes hurts and makes our eyes red...
Lord, help me to show unconditional love to my boys! Help me be a source of comfort when they are hurting. Please, Lord, grant me wisdom in all situations!
