Today I had one of those lovely procedures that you're supposed to have when you are over 50 - a colonoscopy. I am a few years past due having it, so today was the day. I'll spare you the details, but the reason I am writing about it was that it gave me so many flashbacks of the many times we were in the hospital with Jacob.
The first one began when the nurse tried to put the IV in. She had trouble finding a vein and it took several tries. The tears began to flow when I thought of the many IV's Jacob had to have over his lifetime. He hated it - who really likes having them put in? - but he always endured it. He would always hold my hand and squeeze hard while the nurse was trying to find a vein. He would also always make eye contact with me and hold my gaze during the process. When he was young, his look was one of fear and pain. When he was older, it was with weariness from the pain. There were many times when it would take several nurses to find a vein and sometimes a doctor would be called in. One time, the nurse from the Lifeflight helicopter unit had to come since they are considered the "experts" in finding hard veins. While I write rather casually about this now, these were such difficult moments for him and for us. Watching your child in pain and knowing you can't do anything about it is the hardest part about being a parent. It doesn't matter if they are an infant, a child, a teenager, or an adult - it just feels like your heart is literally being torn out to see your child suffer. I know that some of you are thinking that this is what God felt like when He sent Jesus to die for us, etc. etc. I just don't know how I feel about that. Since I'm not God, I just don't know if I could send my child to purposely die for someone else.
That really wasn't what I wanted to write about, so enough of that. Another flashback today: Richard was sitting by me and the pulse oximeter was beeping. This is the little clamp they put on your finger to measure your oxygen saturation level. When Jacob was a newborn, we had one of these machines at home and had to tape it to his finger. It had a red light on the tip. This was about the time that the movie "E.T." was popular and if you remember, E.T. had a finger that lit up with a red light. Anyway, Katie and Ben would say he looked like E.T., so this is what we always called it. Today, when I listened to that machine beeping, all I could think about was the different machines that made various noises when he was in the hospital. I don't think I'll ever get that noise out of my head.
Finally, when the nurses were rolling me into the procedure room, I felt a wave of panic coming. As I was laying on the stretcher, all I could see were the ceiling and walls and medical equipment. I just kept remembering the times that we would walk with Jacob to the doors of the operating rooms. We would stand there, kiss him tenderly and let him go, not knowing if we would ever see him again. He always made it through, despite overwhelming complicatons and setbacks. It just doesn't seem possible that he isn't here anymore for us to go back and see him when he comes out of a surgery, a biopsy, a cath, or a transplant. This was so much a way of life for us for 21 years.
Today, when I awoke from this simple procedure, I looked at Richard and all I could say was, "I miss him so much." I didn't have to explain - he just knew that just being in that environment stirs up so many emotions and memories.
It's time to stop. This is too hard. I know that most people look at Jacob's life and want to think about what a wonderful life he had and how he lived life to the fullest. He certainly did that, but there was another side that most people didn't see. He had to start and end each day taking drugs that had wicked side effects. After his transplants, the drugs he took caused intense nausea, and this was the least of the side effects. He often had to drink a "cocktail" of Gatorade and ginger ale to get the meds down. After drinking 64 ounces of Gatorade last night, I don't know how he ever stood it.
I could go on and on, but the tears won't stop, it's late and I'm very tired. I'll end this with one question for thought:
If God could have spared my son from any of the pain he went through and chose not to - then really, what's the point? If He couldn't have spared him from it, that's one thing, but if He could have - and that's the way we and most Christians have prayed - and He purposely let him live such a painful life, then I'm not sure I really am terribly interested in having a very close relationship with Him.
Good Night.
I have been following Jacob's carepage for three years now. I remember the night of his most recent transplant. When I went to bed, I was crying and crying because you had called family in and believed that if he did not get a heart by morning he would not make it. My sweet husband woke up and checked in the middle of the night and woke me up to tell me that he had received a heart. We cried again. We were at the movie when my mom (who I had given Jacob's carepage to pray for him) called us to tell us that he has passed away. We went strait home - it didn't seem right to stay out. I have never met you or Jacob but I know you have prayed for and thought about my son, Parker from the messages your family has left on our carepage. Anyway - I so appreciate your blog. It was almost a year after Parker's first surgery before I could be inside a church without having a panic attack. I was raised in church and this world - this world of fixed hearts and bad hearts, and good outcomes and bad outcomes...your world and my world...it doesn't "fit" with theology sometimes does it? No advice on how to make it "fit" again...I just know what you mean. I'll just keep reading, crying and nodding my head with you.
ReplyDeleteEmily Hebda (mom to Parker Jay, TGA)
Thank you Emily. You're right, it is hard to make what happened fit with theology. That is a good way to put it. Thank you for understanding.
ReplyDeleteKaren - Oh how my heart hurts for you. Such tough questions. I wish I could say more than I'm praying for you - I wish I could just "fix it" for you. It's been a long time since I've seen or spoken to you, but you have been a great influence in my life. I just can't possibly imagine what it was really like for you and especially now. I just know it hurts very badly and I am so very sorry.
ReplyDeleteBetty Hayes
Karen,
ReplyDeleteWe've never met but many of our friends know you. We learned about Jacob a few years ago in our SS class at McEachern UMC and continued to pray for him over those years and for your family after his passing. We also have something in common. We have both lost our sons. Tyler passed away in Aug. 2008 from Ewing's Sarcoma. I rarely write on his caringbridge page now because I just don't know what to say. I love that you are writing here on this blog. While I would NEVER pretend to know how you personally feel,it seems that everything you have written, I have felt- and while I am so so sad that you have these experiences, it has helped me to see that someone else gets it- still- after two years- when everyone else thinks things are okay and you're 'better now'. Life here is so complicated but I try hard to live as fully as I can if for no other reason than to honor Tyler's love of life. I just wanted you to know that I was thinking of you and am so grateful for your writings...
I have followed Jacob's care page for awhile now. My son is 5 and has HLHS and a Fontan. I remember where I was when I read that Jacob had passed away. I'm always drawn to your and your husband's writings. This recent posting really hits me...the IV pokes...are probably some of my worst memories of all Ethan's 4 heart surgeries and 15 caths...The fear in his eyes and the pain in my heart that I cannot/ could not change his pain. Thank you for being honest. This journey is one that many people cannot imagine. I sit and wonder what Ethan's future holds and I don't know. I too have struggled with my faith and with understanding God. Thank you for sharing your heart and Jacob with us.
ReplyDelete