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.

Blessings!

(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.

Happy goal setting and Happy New Year!!

It’s 3:45 am and my son is up. He’s ready to get this day started and he’s trying his best to let the whole house know about it.

This is typical with children on Christmas day, right? They’re excited to open presents, pour out their stockings and just play, play, play. Unfortunately, my Gideon doesn’t know it’s Christmas. You see, he’s blind and deaf and so really, this morning is just like any other…and right now, he just wants someone to come get him up.

Christmas is just different for me now that I have Gideon. You see I’ve been trying for the past 2 years to figure out ways to make Christmas special for my son who can’t experience this day like other kids. I’ve bought everything from dog toys to special needs toys; and what I’ve finally come to realize is that Christmas presents will never be special for him because that’s not what my son’s heart desires.

It’s finally so obvious to me, that the gift my son desires the most is one that cannot be bought and yet it’s worth far more than anything that can be bought. You see Gideon doesn’t want our presents, he just wants our presence.

He longs for a person to rescue him from the quiet, darkness that (while he’s on this earth) plagues him. Fancy paper that feels cool and toys that vibrate- those can never compete with his need for our physical presence. And why should it? We were created with a need to be in the presence of love.

On this Christmas day it’s my hope that you, like my son, will understand that your Christmas presence is needed so much more than your Christmas presents. I hope you willing choose to see past the flashy media version of what today really represents. Because more than 2000 years ago, God sent the greatest present that humanity has ever known….and it came in the form of His presence. Jesus, the Son of God, came down to light the way and rescue us from the darkness that would otherwise forever plague us.

Embrace His presence today.. and everyday after.

Merry Christmas!

“For there is born to you this day in the city of David a Savior, who is Christ the Lord.  And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.” Luke 2:11-12