I have been feeling led to blog more, and while pondering what I should write about, the first thing that came to mind is to really share Cayden’s story. Not the story of his death this time, but the story of his LIFE. His miraculous, much-too-short but oh-so-amazing life.
So I am going to do my best to do a daily series this month, as time counts towards his birthday on the 28th. Cayden will be 11, and spending another birthday dancing in Heaven’s fields of grace, while we celebrate here on earth with oreo pudding pie and balloons in his honor.
My plan is to share a little each day about what Cayden’s specific needs and challenges were, to more fully explain what it was like to be his parent, his caregiver and his friend.
Cayden’s needs were expensive. There were many medical expenses from before he was born, until the time of his death. (Thank God for the blessing of good health insurance).
Cayden’s needs were complex. His list of issues is so so long. Many of which are hard to read and harder to pronounce.
Cayden’s needs were time-consuming… almost all-consuming… in a way that parents of typical children just cannot begin to fathom.
Cayden’s needs were simple. He asked for very little besides love and attention, gentle caregiving, and he was usually happy and content unless he was in pain.
Cayden’s needs were what Cayden needed. NO more, no less. Just as any parent would feed and bathe and clothe their child, we fed and bathed and clothed Cayden. It was just a longer and more complicated process because he couldn’t sit up, couldn’t hold a spoon, couldn’t tell us what was going on with words. But we did our best to give him what he needed daily, just as we do with our other kids.
People often said “I don’t know how you do/did it.” Well, neither do I. We just woke up each morning and did what needed to be done. I worked on researching one of Cayden’s issues at a time, whatever was the most pressing, and tried my best to figure out what to do to make improve his life in that area. I just loved my child, I wanted the best for him, and I did what I could to make things easier for him and for us as a family.
I’d like to say I prayed daily for strength and wisdom, but I didn’t. I often didn’t have time or energy to be dedicated to prayer or bible study. But we did lean on Him, lean on each other and our faith community when things were hard. We were faithfully attending church, daytime and evening Bible studies and many of those lessons learned then pulled me through those first few years like nothing else could.
One of those lessons was learning this passage by heart, holding it so close it could not get away. It answered the questions we didn’t dare ask.
Psalm 139:13-16 (from The Message) tells us:
Oh yes, you shaped me first inside, then out;
I thank you, High God– You’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration — what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth,
all the stages of my life were spread out before you,
The days of my life all prepared,
before I’d even lived one day.
Cayden was made by God, and for God. He was made exactly the way God planned. From his conception to his death, his days were numbered and prepared. God knew him inside and out, it took us a while longer to figure out all the details of his magnificent little one-of-a-kind body. But as we got to know him, we learned more and more about just how marvelously made Cayden was!
Cayden was one-of-a-kind, his genetic make-up was unique. Not the regular “every person is unique,” unique, but the “this genetic translocation has never been recorded before” unique. He was a clean slate, with an unknown outcome. The doctors really didn’t know what to tell us about his prognosis, so we just stopped asking. It didn’t matter anyway, we were going to love him no matter how long we had him.
This week I will share all about Cayden’s many diagnoses. He had many… from his microcephalic head to his extra curled little 4th toes. Put them all together & you’ve got Cayden! Our sweet special firstborn son. Tune in tomorrow for more about Cayden’s unique little magnificent brain!
See you tomorrow!