The kids have both fallen asleep without me. I am exhausted. I need sleep. However, the Lord is speaking to me especially tonight. I could count on one hand the number of times I have been able to sit in stillness and silence since being here. When you live in one room with your kids, it's hard to "get away." I have longed for a night like this.
I specifically remember the morning after Caed's initial surgery standing in PICU just staring in disbelief at my baby whose face was swollen and a ventilator taped to his mouth. I can still hear the steady beeping sound of the monitors and machines. "What in the world just happened? Just less than 24 hrs. ago, he and Reagan were playing at the park with Todd. How could our lives have literally turned upside down in the blink of an eye?"
Now, to really think back to everything that has gone on the last 8 months.....well, quite honestly I get sick to my stomach when I do. And yet, I find myself going there
every single night before falling off to sleep. Even now, as I sit here in "silence, " the rhythmic sounds of Caed's 2 pumps are constant reminders. Giving nightly hugs and kisses is different now. He isn't the same little boy all curled up with his blanket. All the tubes, gadgets, and pumps surrounding his bed and protruding out of the sheets are constant reminders. I have actually gotten used to his backpack. Most days I forget he's even wearing it. But, the times I do take notice are when I see someone staring or I hear the usual comment, "Did you go to school today?" (I think this one is especially funny when they say it at night or on weekends! Do they really think he would
still be wearing his backpack? ha!) Don't get me wrong either, I in no way take offense to the comments about the backpack. I
fully understand that people have no clue that he's actually hooked up to it! I sure never knew kids wore them for things like this. It is a first for me too. But, when we are out and his pump starts beeping, etc... (especially quiet places like church or the movies), I notice people around becoming very curious. Again, it becomes a constant reminder. Every bath and every time Caed changes clothes......again, it is a constant reminder. Having to monitor (and record) everything he puts into his mouth and everytime he goes to the restroom.....a constant reminder. The cabinets and counter spaces that are full of meds and supplies.....a constant reminder.
My entire life is now centered around Caed and his illness. I KNOW that I am not the only one. I KNOW that many of YOU reading this right now likewise are dealing with those
constant reminders. Those things in life that you just can't escape, as much as you would love to. They are there when you wake up in the morning, surface many times throughout the day, and again are right there with you as you lay your tired body down to sleep at night.
Last week during our clinic visit, Dr. Mercer made a simple statement to me. I know he said it strictly from a physician's point of view. He thought nothing of it, and in all honesty, there really isn't a lot to it. BUT....I don't think I heard much else he said after these 4 little words rolled off his tongue. "
Maybe when he's 7........we can try to take the G-feeds away." This wasn't necessarily something completely shocking to me. We have always known it will take lots of time. But, this was the first time any dr. put an age to it. I know....it's only 2 years. I know how fast 2 years will fly by. But, to think we will
still be going through all this? Mixing the formula everyday, setting the pump and attaching it to the backpack, holding it
everytime he goes to the restroom, all the meds, and on and on................... The one thought that kept going through my head was "t-ball!!!" ha! Crazy I know. I just don't know how "normal, rough and tough little boy things" fit into the equation. It's one thing for Caed to be playing baseball or football, etc...with his Daddy, but when will he finally get to
be on a real team??? Something he talks about so much. I know as I'm writing this, I'm sounding so petty. I know there are children out there who will NEVER get to do those "normal" things. And here I am whining about a couple of years possibly! I think it's just the grieving process. I have always equated 'grief' with death. I am finding out now that grief is simply dealing with a loss. Any loss. Big or small. I know Caed has also (in his own way) been going through this process as well. I am also aware that in all honesty, 2 years is not the end.
Caed has a chronic illness. This will follow him for the rest of his life......for the rest of our lives. It can easily become very overwhelming for me though to think about that. I guess I am still learning. Learning to be a parent of an ill child. Learning to stop having these unrealistic expectations of what I think my life "should" look like. (something right out of the movies, mind you...ha!)
Everyone has a story. Everyone has that "one really tough thing" that they have to deal with at some point in their lives. Sure, some seem to be worse than others (in our eyes), but never the less, no one is exempt. It doesn't matter how "good or bad" you think you are. It doesn't matter what kind of life you have lived. Trials are simply inevitable. It's how we choose to respond to them that do matter. We are all sinful. None of us will respond right everytime. Our human nature screams for us to run from trials. To want to curl up and let them defeat us. I believe when we allow God to work in us, to trust Him, and fully acknowledge that our Sovereign Lord indeed DOES have purposes for
everything......our trials (the very things that we think are bringing us down) can actually make us
stronger! And this requires a
daily sacrifice. We have to choose every single morning, everytime those "constant reminders" rear their ugly head, to TRUST....to be thankful for God's love and mercy....to feel Him holding us and carrying us through.....and know that He will never leave or forsake us!!!
I do hope that we don't get too used to the "new Caed." Even though everything is becoming so routine, and there might even come a day when we don't notice the backpack, or pumps and tubes like we used to; I pray that God doesn't allow us to forget. I pray that He will continually use it all to be a
constant reminder of His Goodness, His Faithfulness, His Grace, and above all His LOVE for us!!
On my bed I remember You; I think of You through the watches of the night. Because You are my help, I sing in the shadow of Your wings. My soul clings to You; Your right hand upholds me. (Psalm 63:6-8)
