Friday, June 10, 2005

Keri's Birthday

Going up to Maryland this weekend to celebrate my neice's 30th birthday. Near Annapolis area...about 75 miles north of our neck of VA. Her mom, (my sis) rented a hall where she's going all out to make this an over-the-top special occassion. Special because 11 years ago, we didn't think she'd live to see it. That's when Dee's (my sis)only daughter, the oldest of two kids, walked into an emergency room complaining of a horrible headache, disorientation and numbness around her mouth...they made a quick diagnosis of MS, put her on massive doses of steroids and, though its much more complicated, I'm sure...in a nutshell...she proceeded to fall into a coma for the next few years, progressively getting worse and worse. This was the beginning of a nightmare for the entire family.

I know you've noticed on my profile, one of the blogs is "the starving of Terri Schiavo" This tragic situation brought back vivid memories of what we went through with Keri. In fact, those videos we saw all over TV? They looked EXACTLY like Keri in the early days of her illness. Worse than just the overall memories and video reminders was the horror of looking into Keri's face, and swearing we saw life...when all the experts swore it just wasn't there...that her responses and eye contact were all merely reflexes. I'm telling you, when I heard that Dr. death, who sealed Terri's death warrant, spew his propaganda that her responses (we clearly saw) to her mother were no different than "fingernails growing" I felt like snatching him through that television screen...ripping out his heart...and ...(oops) Ok, in a "Christian" loving sort of way:):):)

Seriusly, the whole Terri Schiavo thing still haunts me, as we now know that all these leading neurologists and other so called "experts" in Keri's case were wrong and we DID see life, recognition and awareness. She WAS responding, in complete opposition to what we were being told. Keri was also feeling pain when we were told that she absolutely felt nothing. How do we know???? Keri "told" us. How? #1, Keri didn't have a husband bent on killing her and #2, she had parents who fought relentlessly for their daughter, despite what "experts" were telling them. AND...despite the humiliating, condescending attitude of SOME (not ALL) med professionals who said things to my sister like "we're worried about you" "you're being selfish" "let her go" "you're in DENIAL"...and one who actually slammed his fist on the table to Dee's request that he might try something else. "You're going to have to face it!!! Your daughter came here to die!!" He yelled.

So what happened? Well, this is a really short version, but, after winning a court order to have her seen by a doctor,3 states away, willing to re evaluate her, she was taken...stiff and in the fetal position, by ambulance. Upon re evaluation, she was taken off steroids completely, re treated for LYME's Disease and began to respond. Of course it's been a very, very long road to the point she's at now. At first she "spoke" through a computer. But...even though she could only make noises at that time, I was astounded how much of Keri was in there...when I asked her about her treatments and asked "what are you learning?" She looked right at me, touched her screen and the mechanical, computerized voice quipped "STOP SLOBBERING" We all cracked up and she just threw her head back laughing.

Keri laughs a lot. That's the thing we could understand about the Terri Schiavo case, that just didn't come through in the news. The thing that made it so sad. They were judging everything on who she had been. We know by experience, that Keri, although still confined to a wheelchair and is difficult to understand, loves her life. I remember watching her, interacting with her, thinking..."God is so amazing...there is something about the human make-up that will adjust and allow contentment in the most extreme things." While no one would specifically ask to be in such a state, we have an incredible desire to live...with anything." I think it's love. Suddenly, things get way less complicated and it seems, in Keri's case, at least that the joy of the simple things sustains. She brings as much joy to all of us close to her. I believe God teaches love at it's deepest level when we are able to serve one another in our need. There are gentle intimacies and tenderness we could not experience any other way. What if we were all strong and all our needs were met? We think THAT would make us happy, but, I don't know....I fear that would make us all so self-consumed, I'm thinking we'd be unfit to be around.

That's what I found so heartbreaking & disturbing about the Schiavo case. The mom clearly knew the "new Terri" in all her simple need. She had the motherly instinct to care for her, protect her at her weakest but...was legally banned from it. By court order, she could not even so much as put an ice chip on her daughter's lips as they dried from lack of hydration. You know, in a normal hospice situation, they would never keep water and hydration from a person, it's way too uncomfortable and it would not prevent the death, because they were really dying. In this case, the lack of water was the 'cause of death.' It's still unbelievable to me that this could happen.

That whole thing just makes everyone in the family appreciate Keri all the more. Oh..I know there will always be those who look at her, as they did Terri Schiavo and say..."Sheesh, I wouldn't want to live like that." But...unless you've been there, you just don't know...you just don't know.

Anyway, I hope both of you...(that is how many of you read this, isn't it??) Hi JOJO! have a great weekend!

1 comment:

Jojo said...

You better believe I'm reading...and crying. I sooo understand. I am so thankful that no Dr or medical professional tried to talk to us like that and I still cannot believe you had to get a court order to have another Dr see her - I cannot fathom that. I was the one who thought there was no recognition in my daughter - but the circumstances were different being her problems started at birth. But she has grown and developed a little and I'm grateful for each and every thing that has developed. Her smiles are so precious to us. I do have a hard time seeing her go thru the things she has endured - but I would never choose to take out her feeding tube and starve her to death. I know without a doubt that God has allowed Kristin to be here for a reason - there have been so many times we thought she would die - and Mel, I think you touched on some of those reasons. It sure changes the perspective of life and problems and what we take for granted. And I am so thankful for where I have come in my faith thru all this. I cannot wait until the day that we are in heaven and my precious daughter can walk and run and talk and give me a hug and kiss. I cannot wait to see the place Jesus has prepared for her - I know it will be so worth all the limitations she has now. Please don't misunderstand - I do not think God made her this way - although I did for awhile - I now understand that we live in a broken world where things don't go right. But God did allow her to be this way - he could have healed her or taken her - but I know His way is best and I really believe and trust in that, with all my heart.

I hope your niece has the most special day - and I hope I get to meet her someday. Will be praying for all of you.