Friends, I have some beef here, and I'm not even sure who it's with.
First, James seems to be suffering from some form of PTSD (post traumatic stress disorder). Now, if you think about this, it makes perfect sense. Let's translate his experience into adult terms. You go on vacation (somewhere new), with some friends (your parents), and your friends say it's ok to go with these new people (the doctor and nurses). You then you wake up blindfolded (eyes swollen shut), tied down, unable to scream (with a tube in your throat), and in the worst pain you've ever experienced. You can't eat, but they keep cramming these gross substances (painkillers) into your mouth, and then you unexpectedly fall back asleep. The lights go on and off at all hours, and you hear people you know (your parents), but they are not saving you from this torture. Seriously, how does this not mess a person up permanently?!! I'll tell you how...he's 9 months old. In a month or so, he'll forget it. As long as we love him and hold him and reassure him as he wakes up (every 45 minutes all night LONG!), he'll get over it. I hope.
Really, how do they not tell parents that this is what will happen after the surgery? I know, I know, it's just more stress....But, here I was, all geared up, all prepared for the actual surgery, for the days in the hospital, for the coming home, and I'm completely slapped in the face with the fact that my kid acts weird now. I'm sorry, I don't know how else to put it. He looks great. He is externally healing well. Everyone is impressed at how "well" he's doing. But he's not quite the same bubbly little guy that I knew during the day, and he completely freaks out at night. He doesn't like to be left alone. He has nightmares. He's impatient. I'm ok with all of that, but I didn't expect it. Come on people, where was the warning label?
Second, I, myself am having some post trauma issues. I close my eyes and keep seeing my little guy stop breathing. I see him trying to pull his eyes open. I see him lying there in so much pain that it hurts him to hold my hand. I know, this too will lessen with time. I know, this too is compounded by the fact that we're all not sleeping that well. But it still stinks.
On top of everything, I feel guilty. I feel guilty that I'm having such a hard time with this when so many parents go through so much more. The parents of children on the oncology floor. The parents of children on the transplant list. The parents with no insurance. Yet, it's not a "pull yourself up by the bootstraps" kind of thing. I haven't lived a cushy life. I've swam in the pool of adversity; as much as most and more than some. I can organize, compartmentalize, and cope with the best. I pray. I've been prayed for and prayed over. I still feel guilty. I still get depressed. I still cry.
I'm sharing all of this not just for the sake of babbling on, not in hope of receiving any kind of pity or encouragement, but in the off chance that anyone else has or will ever feel this way. I thank God every day that I have Him to lean on, Him to carry me, Him to pick me up when I can't go on. I thank God that I have Him to look up to, instead of looking down at the vast expanse of helplessness that I'm sure extends below me. Friends are wonderful and family are a blessing, but people have a fundamental flaw....they are people. They say stupid things without realizing it. They ask ridiculous questions. They forget. But God never forgets, never belittles, never minimizes, and is never too busy. He always reassures, always gives, always knows what hurts, why, and how to fix it, as long as we ask. So ask. And then cross it off of your list of things "they" never told you.
First, James seems to be suffering from some form of PTSD (post traumatic stress disorder). Now, if you think about this, it makes perfect sense. Let's translate his experience into adult terms. You go on vacation (somewhere new), with some friends (your parents), and your friends say it's ok to go with these new people (the doctor and nurses). You then you wake up blindfolded (eyes swollen shut), tied down, unable to scream (with a tube in your throat), and in the worst pain you've ever experienced. You can't eat, but they keep cramming these gross substances (painkillers) into your mouth, and then you unexpectedly fall back asleep. The lights go on and off at all hours, and you hear people you know (your parents), but they are not saving you from this torture. Seriously, how does this not mess a person up permanently?!! I'll tell you how...he's 9 months old. In a month or so, he'll forget it. As long as we love him and hold him and reassure him as he wakes up (every 45 minutes all night LONG!), he'll get over it. I hope.
Really, how do they not tell parents that this is what will happen after the surgery? I know, I know, it's just more stress....But, here I was, all geared up, all prepared for the actual surgery, for the days in the hospital, for the coming home, and I'm completely slapped in the face with the fact that my kid acts weird now. I'm sorry, I don't know how else to put it. He looks great. He is externally healing well. Everyone is impressed at how "well" he's doing. But he's not quite the same bubbly little guy that I knew during the day, and he completely freaks out at night. He doesn't like to be left alone. He has nightmares. He's impatient. I'm ok with all of that, but I didn't expect it. Come on people, where was the warning label?
Second, I, myself am having some post trauma issues. I close my eyes and keep seeing my little guy stop breathing. I see him trying to pull his eyes open. I see him lying there in so much pain that it hurts him to hold my hand. I know, this too will lessen with time. I know, this too is compounded by the fact that we're all not sleeping that well. But it still stinks.
On top of everything, I feel guilty. I feel guilty that I'm having such a hard time with this when so many parents go through so much more. The parents of children on the oncology floor. The parents of children on the transplant list. The parents with no insurance. Yet, it's not a "pull yourself up by the bootstraps" kind of thing. I haven't lived a cushy life. I've swam in the pool of adversity; as much as most and more than some. I can organize, compartmentalize, and cope with the best. I pray. I've been prayed for and prayed over. I still feel guilty. I still get depressed. I still cry.
I'm sharing all of this not just for the sake of babbling on, not in hope of receiving any kind of pity or encouragement, but in the off chance that anyone else has or will ever feel this way. I thank God every day that I have Him to lean on, Him to carry me, Him to pick me up when I can't go on. I thank God that I have Him to look up to, instead of looking down at the vast expanse of helplessness that I'm sure extends below me. Friends are wonderful and family are a blessing, but people have a fundamental flaw....they are people. They say stupid things without realizing it. They ask ridiculous questions. They forget. But God never forgets, never belittles, never minimizes, and is never too busy. He always reassures, always gives, always knows what hurts, why, and how to fix it, as long as we ask. So ask. And then cross it off of your list of things "they" never told you.
Argh. Pain. It is truly lamentable that "they" never told you. Just think, sweet baby James came into the world, innocent and fully trusting the only perfection he knew. Then, completely unfairly, and not at all understandable to him, he endured all that. These are not matters of Fault, ergo a call for guilt. This is that which we call the Human Condition. And that condition is the very essence of our need for Faith. Otherwise, how could the very best of us face these daily encounters with treachery and cruelty? Like James we say: "But I don't recall asking for this!". And so we reach out within ourselves, to the only possible perfect being. In comparison to our realization of Perfection, no human can compare. But only humans know the difference. German philosophers and psychologists sometimes call this phenomenon "Weltschmerz".
ReplyDeleteAs you've wisely discovered, it is not good to wallow in these matters. Be advised, however, the more you love, the more you risk pain. That's OK. Gird your loins and embrace all.
From my own point of experience, you might consider leaving a light (nightlite or other) on for James for a while. Fear in darkness is a universal archetype. Might comfort him when he wakes.
Much love! d.h.
Hi! I'd ask how you are, but I know you're stressed, sleep-deprived and pushed beyond what you wish was your limit. I do have one suggestion for your James, and that is to sleep with him. I know that the experts say that co-sleeping can be a bad thing. But maybe if you slept on a mattress with him in his room, at least for a while then he would not be so scared. I mean sleep with him cuddled up next to you, it may be nice for you too. You may want to sleep in his room instead of him sleeping in yours because that way you can slowly ween him back to his bed and then in his room alone. But maybe being next to each other during the night would help. And definitely get a night light. I'm sure that you are spending more time with him during the day, but make sure you make special time with him just before bed. I'm all for co-sleeping when the situation warrants it, you will be able to get him back in his own bed when it is time. My Jimmy went through two weeks of something similar to what James is going through. After his very awful circumcision where the numbing medicines didn't work and he bled more than the other boys, he would wake up and cry a cry that was terrifying and he would just shake all over! It was awful! I know that he was having nightmare about his experience, but he did get better after a few weeks. Maybe that will give you hope. Ruthy
ReplyDeleteThis may sound morbid, but when James is older, he may see his scars (emotional and physical) as a badge of courage, something he has overcome. Case in point: think about cousin Rachel after her first round of kidney surgeries around 2 yrs old.. she hurt then, and had her challenges coping, but then she embraced it and used her experience to educate others. She would run around at the grocery showing people her scars! Even today she shows great courage and ability to channel her fear into something that helps others to understand what she has gone through.
ReplyDeleteOn another note, maybe try doing the meditations I sent you. Both are good to help you to breathe, to open yourself for healing, and to deal with your anger, but James may also find comfort in the soothing voices and soft music.
Love you,
Jaime
You continue to be in our thoughts and our prayers. We put your entire family on the prayer chain at our church, so there are 27 Presbyterians praying for you everyday. Never forget that God holds you and Sweet Baby James in the palm of his hand.
ReplyDeleteLots of love,
Chas and Beth
I wanted to write and say something really profound, but then I remembered who I was and figured I'd better leave it alone. The only thing that has gotten me through the tough times is when I remember to thank God for everything, good and bad. Then ask Him to help me understand what it is I am suppose to learn with the adversity. I sure haven't received answers to all of my request but I love where I'm at and without all of the good and bad........ummm, who knows where I would be??? Your surrounded by people who love you so know that you can let loose and ask for anything and people will help. Cute kids, hope to see them soon.
ReplyDeleteNight lights, sleeping with him are great suggestions, but Sara you need to take care of you now. James is okay, you did what you HAD to do. You are a very sweet person and you feel guilty. You may need to talk to someone, professionally, you do not know. Not for medicine, just to talk. It will make a world of difference. Being depressed and feeling guilty will rob you from the joy life has for you. I had to do what I suggested to you after mom died and Lillian was born.Keeping God close in your heart will always help.
ReplyDelete