Yesterday I got a phone call from Gideon’s endocrinologist office because they had gotten the results from Gideon’s blood work. Here is what she told me-
Gideon’s ACTH levels were “high-ish”
Gideon’s cortisol levels were “mid-normal.”
Gideon is in what’s called “compensation phase.”
Basically this means that Gideon does not currently need daily medication but he will need what’s called a “stress dose” of cortef when he is extremely ill.
Can I just be honest? I’m still learning what all this means. I have a very basic knowledge of science in general and to make matters worse, I don’t research this stuff until absolutely necessary (which may or may not be a good idea).The parents on the PBD support page talk about these levels regarding their children so I know adrenal insufficiency is an issue for our PBD kiddos….but I don’t want to learn all about it until I absolutely have to. I saved this photo yesterday to my phone just to help me grasp some of these terms visually.
The statement “ignorance is bliss” is all too true when it comes to the progression of this disease regarding my son. I know the future looks bleak and I’m not ignorant to the fact that harder times are coming…. but I just want to enjoy today as best as I can. Otherwise I might waste every day worrying about the suffering my son might face tomorrow. And that’s not a healthy place for me.
So if you have lots of questions about what all this means, rest assure, I have more. I’m slowly taking in information and what the next 6 months to a year look like as the disorder progresses.
For now you’ll have to take your questions to Google.
Over the past couple of weeks, I’ve been struggling with the lie that I’m not a good mom. Mostly because people had asked me what we were doing for Gideon’s 2nd birthday. I feel as though there were some pretty big expectations, given his diagnosis. I would shrink & deflate awaiting judgement as I would tell them we’re not doing anything big.
Don’t get me wrong, each birthday for him is super important; no one is more aware of that fact than I am. I don’t like throwing big parties anyways, and since Gideon can’t fully experience the decorations and the hype, a big party just seemed to be a waste. So we kept it low key this year and spent time with family. We had lunch at the Rock House and came back home for cake and ice cream….he did NOT like the cake. But he is an ice cream fan. (Check out my Facebook page to see a video of him crying once we finished singing happy birthday!)
Gideon has more toys that light up and vibrate than he knows what to do with…so for his birthday, Kevin and I got him this.
Yes, that is a car buffer. Let me explain. One of Gideon’s favorite times is when Dr. Traxler (our chiropractor) uses the percussor after his adjustment. The percussor is a vibration tool that frees up the fascia and allows it to flow smoothly again. From my understanding it helps relieve nerve pain (not that Gideon suffers from nerve pain). We basically do it because Gideon LOVES the vibration. So instead of spending $2,500 to buy a percussor, we spent $25 and got a car buffer. Does the same thing…kind of. Silly I know, but G loves it so that’s all that matters. (Don’t worry, he got other presents from our families.)
You’ll notice I wrapped his gift in bubble wrap. Because he’s blind opening gifts doesn’t make much sense. I thought if the wrapping was textured it would be more enjoyable and while he is smiling in the photos, it wasn’t as big of a hit as I was hoping for…oh well.
Overall we had a pretty great day celebrating our little dude. And when it was all said and done, I didn’t feel like a bad mom for not throwing a big party. In fact I was relaxed and stress free and coincidentally(?) Gideon laughed a lot today. Happy mama, happy baby. Maybe there’s something too that.
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!!)
Every January my husband and I write down our goals for the new year. We suck at keeping new years resolutions, but we’re pretty darn good at achieving our goals…go figure. We started our goal sheet back in 2011 when we became serious about paying off our debt (thank you Dave Ramsey…we’re almost there).
This piece of paper we keep up with is nothing fancy, but it sure is effective. We have several categories including physical goals, spiritual goals, marriage goals, financial goals, house goals, and we even have categories for Laynie’s goals and Gideon’s goals.
Sadly, in 2014, we didn’t set any goals. Gideon stopped eating last January and my goal for the first few months was to simply keep him from starving. Plus if I’m being completely honest, when I sat down last year to evaluate the 2013 goals, I became depressed.
When we set Gideon’s goals for 2013, we had no idea I would soon give birth to a child with a genetic disorder. By the time he was 7 months old, it became apparent that most of Gideon’s goals would not be achieved.
I think it goes without saying that it’s hard to set goals for a child who has a shortened life expectancy. It’s even harder to set goals when you have no clue what your child will ever be able to accomplish, physically or mentally. In fact, I still don’t know what to expect from Gideon. But Gideon is not the problem here. The problem here is me.
It’s more apparent to me now than ever (especially since I’m crying as I type this), that my biggest problem is that I fear failure. Which is so stupid because looking back at our goal sheet from 2013, we achieved so much that year in every other category. And that was the same year our son was given a death sentence!
So we are setting goals again for 2015. I’ve rejected the lie that somehow I failed my son. Want to hear something funny?? 1 out of 5 goals got met for Gideon in 2013; but in 2014 all those goals from the previous year got met…all except one!!
I’m not sure if you’re a goal setter. Maybe you’re a perfectionist like me and secretly it scares you to fail. Maybe you have a child with a disability or a shortened life expectancy and goal setting seems pointless. Can I offer you some encouragement?
Set some goals anyways!!
You’ll be surprised at how many you accomplish. And the ones you don’t, transfer them over to next year and try again. That’s what we are doing with Gideon. We’re putting walking back on the list. He probably won’t accomplish it this year, but that’s okay. That’s why we’re giving him more than one goal.
Going forward, someone besides me needs to hear this- God doesn’t expect us to be perfect. He already sent his Son Jesus to fill that role! As we outline our goals, it’s my prayer that first and foremost we would seek to draw closer to Him. God wants us just as we are…broken and imperfect. The beauty of the cross is that we don’t have to accomplish any goal before we come to Jesus. We can come just as we are and He’s faithful to take it from there.