What do I know about caring for a medically complex child? Do I have any insight or wisdom to offer to a room full of physicians? Well, I am not an expert in any field of medicine, but I hope I did our community proud by sharing the journey our family has traveled over the last 25 years.
The invitation to speak came from the CHRISTUS Health, Texas A&M University College of Medicine Santa Rosa Family Medicine Residency Program team. I felt nervous and honored at the same time because our story is just our story … so unique and perhaps a small segment of the community they serve. However, I felt the stories of Robert’s medical complexities and the care he received would benefit them in their medical practices.
After being introduced by my husband, Dr. James “Chris” Henderson, (yes, that was an added bonus) I felt immediately comfortable as several of the physicians seated in front of me were friends who had been a part of our lives for many years, offering love and support. They were a very attentive and smart group!
I shared Robert’s medical history, and then moved into what I believed were the three most relevant points I needed to share about caring for a complex child from a parent’s viewpoint to these servant-hearted physicians: The Important Thing, The Hardest Thing and The Lasting Thing. My lecture centered around our family and how we navigated the journey through different hospitals, physicians and home health employees. It focused on what went well in our relationships with the medical community and where I believed improvements could be made.
In my eyes, it was a time of great interaction with a team of physicians who cared enough to ask a parent like myself to share. I am forever grateful for their time and feedback. I know their patients with disabilities will be better cared for now and in the future because they dared to ask what a family needs.
Let’s be honest. I really did not know anything about raising a child with a rare complex medical diagnosis before I had Robert. I am learning new and exciting things all the time about the value of sharing his life with others. We all have a voice to add to the conversation of care and inclusion.
Thank you for inviting me. I honor you physicians for the wisdom to ask for insight into our world of Life Unexpected!
Listening Library: The Caregiver’s Song (Celia)
“Blessed are those who have regard for the weak; the Lord delivers them in times of trouble.”
(Psalm 41:1 NIV)
The Caregiver’s Song
I wouldn’t wish it on anyone.
The rollercoaster you’ve been on with me.
And for the times I’m not easy.
I am sorry.
There’s a blessing in heartache.
There is love beyond pain.
I take nothing for granted.
And I’ll never be the same.
For caring for me.
You are my family.
It’s not easy feeling broken.
But I want the word to see.
How you have cared for me.
I wish you could see what I see
As you prepare for the worst.
Wish you could know that I know
How you silently hurt.
There’s a gift in the healing.
Though it doesn’t seem fair.
But now I can face anything.
Just knowing you are there.
For caring for me.
For when despair becomes belief.
For all the promises you keep.
For all the words that I can’t speak.
Thank you for caring for me.
And Oh, you’re my anchor.
And Oh, you’re my solid ground.
And Oh, you’re my angel.
My heart is full beyond profound.
Thank you. Thank you.
For carrying me.
For when your hope becomes your grief.
I get all the sympathy.
But I need this world to see.
To see you, and how you have cared
© 2011 Red Granite Goddess ASCAP