Going "Journal Deep" Today

We are back home after 10 days in the ICU of our local children's hospital. Not exactly the place that I would choose to have frequent flyer status, but there are good things about having the majority of the staff say, "We remember you and your son." When they know you, there is more compassionate care and a little more respect for parental wishes for treatment of your child. An EZPass to connecting with the doctors, so to speak.

So, there we were...the night before Easter, watching our child, fighting for hours to get air into his compromised lungs. The only way I can describe the helpless terror in my heart during this ordeal is to compare it to watching your child drown in a pool and no matter how hard you pull to get them out, they just keep going under water out of your reach.

As dawn came on Easter morning, I thought about past years of egg hunts, sunrise services, and family pictures in the yard by the blooming azaleas. This year, instead of an Easter basket, my child was given heavy sedation and a Bipap mask to make him comfortable. In lieu of candy, we digested the diagnosis of Mycoplasma (walking pneumonia). In an already compromised airway, the swelling and mucus associated with this bacterial infection is what caused the obstructions and panic of "air hunger." A prognosis of "yes, he will probably get through this, but if there is virus in addition to bacterial infection, he may not be strong enough to fight," was said with tenderness from our doctor who is known for his sincere bedside manner.

This isn't the first time we have faced losing our son. The reality of his condition is that it won't be our last. Over recent years, his health has declined. His bad days outnumber his good days. Pneumonia is always a threat. So are seizures. Just last week, while Jake was hospitalized, one of his classmates died at home after a bad seizure stopped his heart. This is the life of parenting a child with life-threatening conditions.

Okay, I said I would be more honest in my blog...here's some more thoughts that I usually only save for my private journal:

I have realized through parenting Jake that there is a worse thing than losing him...that is watching him suffer. [I don't want to minimize the experience of others who have lost their children suddenly. I can't imagine the shock and grief, especially to lose a healthy child that you assumed you would watch grow into adulthood.] I just have witnessed so much suffering with Jake that I sometimes feel like I have spent years watching him die. I think about his funeral sometimes...how I would want his life and God honored...who I would want to sing at the service...how deeply sad we would be as a family, but how relieved we would be for Jake, who will be given a body that is free of sickness and pain...how he will be in the presence of God and his twin brother. Not that I want to expedite Jake's passing, but the same motherly love that prays for his survival also prays for God's mercy on a body that has been weakened and sometimes tortured by pain and suffering.

Some say we, his parents, are so strong and God must have thought we were pretty special to give us such a special child. Frankly, that statement really makes me want to shove them right back to the Barney show set where this "you are special" nonsense originated!

I prefer the saying, "God does not call the equipped, He equips the called." That is, we are not stronger or more special. God called us to be Jake's parents and He equips us with the strength and faith to trust in His plan. He ordained every day of Jake's life here on earth and He controls when this life is over. This is where the peace comes from...why I can sleep at night. Not that I don't worry or that I never weep or feel cheated. I just believe God is good, He loves Jake more than I do, and I ultimately accept that there is a bigger plan in all of this...even if I can't see it right now.

That's it...there is a sample of the depth I have been keeping hidden in my private journals. Risky for me. Next post will be on a lighter topic such as another trash to treasure creation by my other two children. Why throw away packaging when you can transform it into a knight's castle?