“Obtain, Maintain, Sustain” -Regina

Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. We had a lot of work. Did I spell that loudly enough? WE HAD A LOT TO LEARN. A LOT OF WORK!

We started at two months of age with 12 therapeutic appointments each week. Physical therapy, occupational therapy, speech therapy, and feeding therapy. Then came the floor time therapy, behavior therapy, and life skills. Let’s not forget the doctor’s appointments: cardiology, gastro, neurology, allergist, psychology, developmental, ENT, audiology, genetics, researchers… the team kept (and keeps) growing.

With each new provider came a new routine of visits. We obtained a slew of constant journeys, many miles logged, going from one appointment to another, and that’s ok! In that season of life, we needed every single one of our amazing providers. We obtained a wealth of knowledge regarding how to approach and work through every issue Caiden was experiencing.

We’ve been at the same therapy location, minus a very brief stint of trying one other. Caiden has literally grown up with his team of providers at TherapyWorks. I look at how far he has come—THEY
have come—and I just don’t know where we would be without them in our lives. They have taught me so much in these long, yet short, five years. Every bit of work they committed to with him has been done with diligence, determination, as well as dedication. Not only are they teaching him… But they have taught me as well. A couple of his therapists and I tease amongst ourselves that I should be working with them due to the fact of how much data/education I have absorbed over the years. But, that’s just not in my cards in this season of life. I hope they realize that I do it in order to maintain everything they fight so hard to accomplish. What would their diligence matter if I didn’t carry that with me out of that facility and encourage and maintain the progress? Because of our teamwork approach and because we all fight to maintain Caiden’s success, he is able to do so many things we once only prayed for!

With each new therapy and doctor’s visits, we started recognizing that Caiden was overcoming his many challenges. He learned to use his muscles without the kinetic taping to engage his core, he learned to take those first steps, late is better than never, he learned to simply reach and grab a toy instead of laying and not playing, he learned to play with others rather than stand in the corner, he learned how to look at other people even if only short glimpses, he learned to talk, despite broken word structure, and he learned to EAT! Yay for no more special formula that had to be ordered from the pharmacy!

He’s overcome sooo much. Things that I never realized were part of developmental realities. Stuff like how to tolerate touch, sound, temperatures, textures, etc., without the sensory side of life throwing him into seizures. Two years of seizures during bathtime because of his intolerance of water.
Caiden overcame his inability to balance which led to falling, which led to… you guessed it… sensory induced triggers for his seizures. He also learned to regulate body temperature—no more seizures at night when he wet himself, as the temperature change would yet again provoke sensory seizures.

Now, in this current season of life, Caiden runs, plays, communicates, has decreased seizures, and is making progress in his education. Caiden just received his very first “report card” at our parent-teacher conference indicating that he is able to recognize letters, numbers, shapes, and colors!! He’s been doing this for us at home but has not received credit in the school setting. After we discovered a novel idea that he doesn’t test well based on the testing format, they switched it up and he was FINALLY able to communicate his knowledge with his teachers!!! He’s been attending 30-45 minutes of general education each day at school this year. He was the “Ram of the Week” in the GenEd class last week and he was able to stand in front of his peers as he shared his “All About Me” display, and help his teacher throughout their morning educational routine. He’s also starting to put words together to recite the pledge, sing popular childhood songs like “ABC’s,” “Wheels on the Bus,” “Itsy Bitsy Spider,” and my personal favorite, “Jesus Loves Me.” I wholeheartedly know that indeed Jesus loves him, for without his mercies we would not be where we are! That sentiment brings me to where I am in my heart. The purpose of this writing. SUSTAIN!!!

This crazy, busy, exhausting, never-ending routine is BRUTAL… and I am no spring chicken. As Caiden overcomes his challenges, he becomes more aware of what he is missing out on and he pushes harder to accomplish his desires. He has taken the lead in many activities. He recently enjoyed his first invitation to a birthday party and went skating for the very first time EVER. Never even watching anyone skate before that day! He told his mom, “NOOOOO let go!!” and offff he clumsily zoomed as he figured it out on his own! I didn’t get to witness it as I was traveling and unable to attend, but Chelsi sent me the video and I laid in that hotel room bawling like a kid ripped out of a candy store without a treat in hand. Full on ugly cried!

Caiden is growing like a weed. Bigger, stronger, and heavier. Grammy is getting older, slower, and… we won’t talk about the “heavier.” I look around us and analyze where we were. I look at his schedule knowing he thrives with routine and consistency. I suddenly realized that although we have our Monday-Friday routine down, I am providing monthly calendars based on his appointment schedule to the bus driver—so that she knows whether he needs a ride to and from school; to his teacher—so that she knows when he will be out for the day, late to school due to therapy/doctor appointments, or needs to be an early check-out so that he has time to adjust to a change in his class routine; to his daycare—so that they know whether the bus will be dropping him off, if he will need a hot plate made for him, if he will be picked up in the middle of naptime, or if he will be absent.

Although we have a “routine” and it is “consistent,” Caiden is never able to just “be still.” I thought, “What on EARTH are we doing to this kid!!!” Then I remembered—there was once a season. A season where we had to obtain and maintain such a schedule. A season where it was critical and required. However, he’s grown leaps and bounds. That reality requires a new fair observation and assessment. So, I spoke to his care team. I inquired and shared my thoughts of the opportunity to use his skills and just try being a “normal” kid, a chance to “throw him into society” and see how he settles in. And, yes, selfishly… I shared my fatigue as I feel my body breaking down while trying to help build his up. They each assured me that it is not detrimental to take a break and to just rest, recuperate from the years of tedious schedules. As well, they understood my thoughts on testing the waters to see how well Caiden can use all of the skills he has obtained, to see if he can maintain his level of abilities, and to see if he can use his personal determination to push through the social settings he is now enjoying being a part of. All of his therapists were on board with the idea of taking the summer off.

The next step was a heart to heart with his pediatrician. When I submitted my ideas to her and shared my fatigue, she seemed more relieved than I was. She stated she couldn’t believe we had gone at this pace for five years; that she has never had a patient with the resources Caiden has—the commitment, the multigenerational communal living our family shares, determination, transportation, research, and compliance. Her words were, “I have never seen someone like Caiden, or a family like his”.

I am no saint, nor is anyone in my home. I am a Grammy on a mission to give her children and grandchildren the best resources and the greatest chance of success in life within our reach. We are not special… We are just us. Determined to make the best of what God has blessed us with. She assured me Caiden will not “lose out” by taking a moment to just “be still.” She counseled us that our family must remain strong and that if we fall exhausted, we all fall. She said something very powerful that made me assess across the board for families with additional medical needs where we are all on this journey. She simply stated that the times she “begins to see her patients fail is when the caretakers burn out.” Straight. To. My. Gut! It felt like a punch that knocked the air out of me. To hear what I was starting to feel. To know that by pushing myself, I was ultimately going to end up failing my whole family. It was the confirmation that I was seeking. I had started listening to my body, my spirit, and now… the world.

As women of faith, she reminded me that Jesus called upon us to “be still and rest.” It’s time for us, as a family, to trust with all our heart and soul that we are favored and all is well. To have faith enough to listen when our body is telling us to slow down. To listen to Caiden’s cues of independence. To know that we have obtained such a slew of data/education. To acknowledge that to date, Caiden has maintained all of his skills he’s obtained. To be still, rest, and make sure that we can sustain this marathon, for we are not in a sprint… This is for the long haul, this is a life-long marathon. Without the energy to sustain, will we truly be able to help him maintain what he’s obtained? I think not.

I attended a function last night and was blessed to see the wonderful writer, Julie Hornock speak. She spoke some powerful words that resonated within me, “When you turn around and share your knowledge with someone, it gives your pain purpose.” So, here I am… sharing this with you to hopefully encourage each of you to look within your timelines, your schedules, your fitness for duty. Do you need a break? Maybe just a couple of weeks to just slow down and refill your tank rather than running on reserve? If so, be selfish like I am… take a break. The kids deserve it, I deserve it… and YOU DESERVE IT!!!!!!

 

Be still… And know that it is well.

Matthew 11:28-30

28“Come to me, all you who are weary and burdened, and I will give you rest. 29Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30For my yoke is easy and my burden is light.”

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