Kay ... being STUPID again. Found this and since I have nothing better to post (having run out of good vacation photos) thought I would post it. It is a downer - so I decided to distance it a bit from the actual date of July 4th because, I don't really think this way all the time - unfortunately - I do think this way quite often (and until about 2 seconds ago I was thinking it was Friday - not Thursday and the day we were celebrating Independance Day - still too lazy to come up with another blog ....)
Independence Day - 2001
July 4th, 1988:
We were celebrating the holiday at Bear Lake at Mom and Dad’s cabin. We call it a cabin, but lodge or really big mountain home seems to describe it a bit better.
Mom was fixing breakfast in the kitchen and a few of us were standing around the free-standing range and bar. I had a cold and had been coughing, and at 31 weeks into my pregnancy, I was big and miserable and knew I had a long way to go. I had a bout of coughing and all of a sudden, it didn’t seem so far any more.
My water had broken. I turned to Gary and said; “I think my water just broke”. In his wisdom he said; “Your mom is the nurse, tell her.” And off to Logan lying down in the back seat of a car for a trip to the hospital, where it was confirmed that my water had actually broken (and not that I was just too stupid to know the difference between that and peeing my pants).
Things seemed grim, and I was smart enough to be in a panic – I was over 2 months early. The seriousness of our situation came home to us when they said that the nearest Level 3 infant ICU was in Ogden, which one do you want to go to? We then asked what a Level 3 infant ICU was and what did that have to do with us? They then calmly explained that level 3 was for the sickest babies, and that we would most definitely be needing it.
We picked St. Bennedict’s because Gary’s brother is an OB/GYN there and his sister-in-law is a neo-natal ICU nurse who also worked there. All in all it was a pretty bad day, but God smiled on me once and had Gary’s brother at Lake Powell that particular holiday, so his partner would be delivering my baby. No one understands why I have a problem with having my brother-in-law with his head between my legs, I don’t get why no one gets why I have a problem with that. But, no matter – he was not there and his partner was.
Jessie was born on July 5th, 1988. Her Apgar score was 3. A 9 or 10 is good, she wasn’t. They whisked her off and started doing stuff to her (the stuff that has been done to my Jessie over the years varies, but it never ceases to amaze me how cruel we can become trying to save a life). They started finding things.
She had a ridge down the middle of her forehead – the mytopic suture. It fuses before birth, but hers seemed to fuse too early and left a deformity. She had a moderate sized VSD (Ventricular Septal Defect – basically a big hole in the tissue between the two ventricles of the heart). She was jaundiced. Oh, and it looks like she had an in-utero bleed that is now breaking down.
What is that supposed to mean? We asked, exhausted from all of the other news? It meant that she would be brain damaged, a vegetable, unable to take care of herself, probably unable to walk, talk or feed herself. We said thank you, we get the picture – please stop.
It was at that moment that everything in my body turned to mush and I melted into the floor asking, over and over, what did I do to make her like this? Of course, there is no answer, and if there were, maybe it is more merciful that I don’t know what it was. Who knows?
Jessie has lots of stories, but they are for another time and place – if ever. Lots of ugly times in hospitals that have too many people misusing the power they have. It is ugly, brutal, sometimes unspeakable, but mostly sad, and as I said – for another day.
It is hard to picture a future when you have a ‘forever child’. You see, a ‘forever child’ infers there is a ‘forever mother’. What do you do when she gets older than the baby sitters who will actually baby sit for you (not many)? When is she going to need more than 4 hours of sleep? When is she going to be able to bathe herself? When is she going to be able to tie her shoes?
No friends, just us – forever child – forever around, no more freedom, ever.
What do you do when you are so old you can’t make sure everything is fine at the group home? Who is going to take care of my baby when I am gone? I am so scared sometimes that I feel that I will just burn up into ashes and drift off. For twelve years now I have been trying to not look into the future, because I don’t know what the future will be, and when my mind begins to play those games, I scare the shit out of myself.
Independence Day:
Some think of it as a day at the beach, a day to put your flag up, a day to drink beer and watch TV. Some actually think back and are honored and proud of what the day symbolizes. To me, well, to me Independence Day ended on July 4th, 1988, and it ain’t ever coming back.
Independence Day - 2001
July 4th, 1988:
We were celebrating the holiday at Bear Lake at Mom and Dad’s cabin. We call it a cabin, but lodge or really big mountain home seems to describe it a bit better.
Mom was fixing breakfast in the kitchen and a few of us were standing around the free-standing range and bar. I had a cold and had been coughing, and at 31 weeks into my pregnancy, I was big and miserable and knew I had a long way to go. I had a bout of coughing and all of a sudden, it didn’t seem so far any more.
My water had broken. I turned to Gary and said; “I think my water just broke”. In his wisdom he said; “Your mom is the nurse, tell her.” And off to Logan lying down in the back seat of a car for a trip to the hospital, where it was confirmed that my water had actually broken (and not that I was just too stupid to know the difference between that and peeing my pants).
Things seemed grim, and I was smart enough to be in a panic – I was over 2 months early. The seriousness of our situation came home to us when they said that the nearest Level 3 infant ICU was in Ogden, which one do you want to go to? We then asked what a Level 3 infant ICU was and what did that have to do with us? They then calmly explained that level 3 was for the sickest babies, and that we would most definitely be needing it.
We picked St. Bennedict’s because Gary’s brother is an OB/GYN there and his sister-in-law is a neo-natal ICU nurse who also worked there. All in all it was a pretty bad day, but God smiled on me once and had Gary’s brother at Lake Powell that particular holiday, so his partner would be delivering my baby. No one understands why I have a problem with having my brother-in-law with his head between my legs, I don’t get why no one gets why I have a problem with that. But, no matter – he was not there and his partner was.
Jessie was born on July 5th, 1988. Her Apgar score was 3. A 9 or 10 is good, she wasn’t. They whisked her off and started doing stuff to her (the stuff that has been done to my Jessie over the years varies, but it never ceases to amaze me how cruel we can become trying to save a life). They started finding things.
She had a ridge down the middle of her forehead – the mytopic suture. It fuses before birth, but hers seemed to fuse too early and left a deformity. She had a moderate sized VSD (Ventricular Septal Defect – basically a big hole in the tissue between the two ventricles of the heart). She was jaundiced. Oh, and it looks like she had an in-utero bleed that is now breaking down.
What is that supposed to mean? We asked, exhausted from all of the other news? It meant that she would be brain damaged, a vegetable, unable to take care of herself, probably unable to walk, talk or feed herself. We said thank you, we get the picture – please stop.
It was at that moment that everything in my body turned to mush and I melted into the floor asking, over and over, what did I do to make her like this? Of course, there is no answer, and if there were, maybe it is more merciful that I don’t know what it was. Who knows?
Jessie has lots of stories, but they are for another time and place – if ever. Lots of ugly times in hospitals that have too many people misusing the power they have. It is ugly, brutal, sometimes unspeakable, but mostly sad, and as I said – for another day.
It is hard to picture a future when you have a ‘forever child’. You see, a ‘forever child’ infers there is a ‘forever mother’. What do you do when she gets older than the baby sitters who will actually baby sit for you (not many)? When is she going to need more than 4 hours of sleep? When is she going to be able to bathe herself? When is she going to be able to tie her shoes?
No friends, just us – forever child – forever around, no more freedom, ever.
What do you do when you are so old you can’t make sure everything is fine at the group home? Who is going to take care of my baby when I am gone? I am so scared sometimes that I feel that I will just burn up into ashes and drift off. For twelve years now I have been trying to not look into the future, because I don’t know what the future will be, and when my mind begins to play those games, I scare the shit out of myself.
Independence Day:
Some think of it as a day at the beach, a day to put your flag up, a day to drink beer and watch TV. Some actually think back and are honored and proud of what the day symbolizes. To me, well, to me Independence Day ended on July 4th, 1988, and it ain’t ever coming back.
4 comments:
Such hard memories to deal with - and hard choices everywhere you look. You and Gary have walked so many miles in sorrows the rest of us can't even comprehend. You have my admiration and love for all you have accomplished with the hand that was dealt you, and the fact that you have come through so much with a marriage still intact, and still sane and wonderful people. Hats off!
I appreciate your candor and honesty about your experiences--I really do.
And I love that Jessie has achieved so much more than those early doctors ever predicted.
Wow! What powerful imagery - the forever mom. I had never thought of it that way before.
What doesn't kill us truly does make us stronger. Your family is proof of that!
Much love.
Every day is colored by your experiences. Particularly such terrifying, unexpected, confusing ones. And yet, you are funny. You are kind. You are really tough, in the good way. Maybe not "yet." Maybe "because of." I don't know what it is like to contemplate Jessie's life after your own death. (Too morbid? I'm sorry.) Along with her forever mom, she has a forever brother, and he is a good man. You have done wonderfully as a mother of three very special children. Gary is a wonderful father. I don't know how hard it is for you to share these things with us, but I'm so grateful. It helps me shift my perspective and appreciate God's wisdom.
When Charlotte was given her baby blessing, the Lord spoke 3 times about the trials she will encounter during her life. I was lit. I was terrified. (I'm crying now just thinking of it.) When we got home from church. I locked myself in the bathroom and sobbed and prayed. I kept asking him why would he do that to this precious little baby? I was mad. (I can't imagine how magnified these feelings would be if it had been Jessie.) The answer I got was, "She isn't going to go through them alone. She has a family. I sent her to your family. She has you." Jessie is safe in your arms. She will be safe in His if you aren't around.
Man, I am SO sorry if I am preachy. I know I'm not saying anything you don't know. I think I'm saying it for myself. But for sure, I love you.
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