I’m often admired for my outlook regarding my son’s terminal diagnosis and how we handle it on a day to day basis. But I want to make sure that everyone knows it’s not always sunshine and rainbows when it comes to Gideon’s needs.
This morning was rough. In fact, we haven’t had a morning like this in quite some time. It was one of those mornings where I kept asking God, why me?!?!
Today Gideon had a blood draw scheduled at 8 am. The endocrinologist suggested this test to see if Gideon is in the early stages of adrenal insufficiency. I don’t know much about adrenal insufficiency except that many kids with PBD suffer from this and so we want to find out if this has already become an issue for our little man.
Unfortunately for this test, Gideon had to fast. So we knew it would be a morning full of screams and tears when he awoke. We were prepared for that. However, we were not prepared for Gideon to wake up at 3:30 am. And to make matters worse, he would not go back to sleep.
Here’s a summary of how the morning went down…(and I do mean down).
3:30 am – Gideon wakes up and starts babbling. Hoping he goes back to sleep, we let him be.
4:30 am – It’s obvious Gideon’s not going back to sleep on his own, so I get up & rock him.
4:55 am – Kevin takes over the rocking so I can go to my workout class.
6:00 am – I get home to find that Gideon wouldn’t sleep for his daddy (and now G is really ticked because he’s really hungry).
6:30 am – I’ve showered and packed the car. So I take Gideon to Rockwall (hoping the lab opens early and I can get him in sooner than 8).
7:00 am – I arrive in Rockwall. The clinic opens no sooner than 8 am. Gideon is still screaming, so I drive around the medical complexes until 7:45 am, hoping he’ll fall asleep. He does not.
7:55 am – Two nurses open the clinic.
7:58 am – I get Gideon out of the car and walk up to the door. It’s locked. So I take Gideon back to the car to stay warm and wait.
8:01 am – A nurse unlocks the door and I get Gideon out and take him in.
From the time I walked in, I got the feeling as though both women were not morning people. They were by no means rude, just short & not super friendly. I forgot my paperwork and they had to go into their system to get test instructions, so naturally that didn’t help. And because Gideon was still screaming, I probably asked the nurse to repeat her instructions to me more than five times. Finally the tension and stress were too much and I broke into tears. Then it happened…
I (kindly) pulled the “terminal kid” card.
From that point on, her demeanor changed and she was extremely friendly and super supportive. She encouraged me greatly as I had to physically restrain Gideon while she looked for one of his tiny veins to poke. The stick was fast but holding Gideon for that long while she filled several tubes was more than I could bear. As I soaked his little head with my tears and snot, I told him I was sorry for holding him against his will. And as he continued to scream and fight me, my sadness quickly turned to anger, and I again began to ask God, why me?!?
When it was all said and done, I drove to my mom’s house. And along the way, I let God know a few things that were on my mind….as if He didn’t already know. When we arrived, my mom took Gideon and told me to take a nap. It’s amazing the difference sleep can make. Rested and looking back on this morning’s events, I can see the selfishness of my question. First and foremost, who am I to question God? And secondly, I was more upset about what I was suffering emotionally than what my son was suffering physically. Like a child, I was having a mental fit “Why should I have to go through this? This is too much! Why me? It’s not fair!”
Now let me make this clear- I’m not down playing the emotional toll a person experiences when they have a child with special needs. THE STRUGGLE IS REAL. But selfish anger never produces fruit. Being mad at God (or anyone else for that matter) doesn’t change or make our circumstances any easier.
After Gideon and I both had our naps, I took him to Kevin’s school where Mrs. Elms had made 4 cakes and a big banner to celebrate Gideon’s upcoming birthday. As the faculty came to love on our son, many said what a blessing Gideon’s life has been to them and that they were so glad I blogged about his journey. It was a sweet reminder that his story & even his struggles are making a difference in their lives. It was at that moment that I felt as though God was telling me, This is WHY I picked you. So that you would tell his story and in doing so, you would also tell mine.
How we view our circumstances is our choice. People often ask me how I can be so positive through all we face. And the truth is, I’m not always positive. Sometimes I have really bad days and really ugly cries. But when the tears dry and I’m emotionally spent, I surrender to the One whose grace is sufficient. And ultimately I make the choice to see my circumstances for what they are….a way to glorify my God.
It’s my hope that you’ll choose the same.
(For future reference, Kevin will be attending ALL appointments involving needles and restraints from now on…..because my big girl panties don’t fit. 😉 Plus he loves his daddy WAY more!!)