Cards

Apparently the last time I posted was last November. Mmm. In my defense, a lot has happened since then. There were the usual time-sucking events like Christmas and sleeping through the winter and then there were baby showers, baby birthing and birthdays. There was also a very sad event - the unexpected death of my (step)Dad, Holger.

In a 2 week period I received three different kinds of cards in the mail: New Baby, Birthday and Sympathy cards. Coen Clark was born Tuesday, February 24th just before 7:00 p.m. I turned 32 Wednesday, March 4th (my Mom was here and celebrated her 60th birthday on Thursday, March 5th) and Holger died late Friday, March 6th of a heart attack. He was only 48 years old. As of right now we are still waiting on the autopsy report that will hopefully explain how an otherwise healthy man was taken away from us.

Jon, Coen and I flew up to Massachusetts for the funeral service when Coen was only 2 weeks and 2 days old. During this time my FB status read: "Bittersweet on Cape Cod" and "Carrying a baby and a heavy heart home"

I am devastated by the loss of my other Dad and Coen's "Guapa" (that's what my niece Samantha calls him). Holger was SO excited about the impending arrival of Coen when he visited us just a couple weeks before. I will never forget the huge smile that came across his face when he saw my giant belly. My heart breaks over and over every time I think of my Mom now being a widow, Johannes now being fatherless, and all of the other roles that Holger filled now being unfulfilled. Over 500 people showed up for the Calling. Many of them were the kids from the current and former church youth group of which he was a leader.

But I have tried to keep myself together for the sake of Coen. I am still allowing myself to grieve, but I'm trying to do so in a way that doesn't interfere with my duties as a Mother. I'll cry, but I try not to when I'm engaging with Coen or trying to get the sleep I need. It's been strange and difficult to feel such sadness and such joy at the same time. 

One thing that has brought me comfort is that I believe Coen was "visited" the morning after Holger died. I feel that some spirit form of Holger lingered over Coen's head and gave him some sort of blessing. 

Like a dog with it's head out a car window

Actually, I am not sure that this post will wind up relating to the title - I put it in there because just as this post entry page came up and I was faced with the "Title" box, a car drove by with a dog's head flopping out the window.

So I've been listening to a lot of audiobooks because my eyes tire very quickly when I read because of the strain to focus. It's hard for me to do this, too - but I enjoy it enough to try to power through it. Some of the books are: "Here If You Need Me" by Kate Braestrup, "Mere Christianity" by C.S. Lewis, "Eat, Pray, Love" by Elizabeth Gilbert and kind of off and on, "The Power of Now" by Eckhart Tolle. Now, before you go and think that I am going to become some drone or cultish freak about any of these books, I'd like to say that I am pretty good at "Taking the Best and Leaving the Rest" and therefore feel that I while I may not agree or feel comfortable with all of the sentiments in these books, there have definitely been some wonderful new insights or means of prespective that I like, admire, adhere to or would like to incorporate into my life.

For example, Elizabeth Gilbert seems to have found great peace and strength by learning and following Yogic and Balinese meditation practices. I would like to have more inner peace and strength myself, but I prefer to lean towards my Christian version of God versus, say, the Buddhist version. For myself, I believe that many of us are praying to, worshipping of and/or following the general same lessons of the same "Higher Power" but that we just take slightly different paths to do so. And so what if they're different. I don't care how you find that spot that is so connected within yourself and to the universe around you as long as it doesn't case harm or infringe on other people and hopefully would instead lead to greater beauty to your life and to the lives of those around you. Although I would say that I do care and would like that people

Changing my tack

At this point it's really becoming silly of me to expect that I can or am able to update this as much as I would like to. I can't tell you how many times I lay in bed and I come up with an entire post in my head but my eyes just won't cooperate to allow me to come to the computer and pound it out. It's frustrating, because I enjoy blogging and also because I usually forget what it was that I wanted to say by the time I do get to the computer, often days later.

But the main reason I don't blog hardly ever anymore: I don't have a desk job anymore. I don't spend hours 'working' at a computer that allows for me to piece a post together over the course of a day. I can't come into the computer/laundry room while Coen is up because he just loves messing with everything in here that he really shouldn't be messing with, especially the keyboard and super-especially after he managed to do some keyboard command that make my screen turn to a sideways view once!

I like sharing my little thoughts, epiphanies and opinions AND I like making them "real" by putting them onto "paper". Ah, well, maybe it's not meant to be. Or maybe, as I have been learning, I have to wriggle within the limits of my current life and so I have to sit down while he's napping to get this done. We'll see if this new tactic works.

Today I want to talk about a funny topic: my faith. To some people I'm sure I seem like some wacky liberal heathen with tattoos and not-so-very Christ-like ways. And that wouldn't be too far off the mark, in a way. But what I am only now beginning to show is what has also been true for a very long time: that I am a Christian who believes in a loving and just God. I was raised in the church and was burdened and blessed by having experienced many different kinds of churches - Presbyterian, Southern Baptist, Nazarene, United Methodist and non-Southern Baptist. It was tricky for the obvious reasons: am I saying trespassed, sinned or debtor in the Lord's Prayer? Some of the core messages would vary wildly; i.e. am I SINNER or am I FORGIVEN? (We're both really, but some denominations focus more on one than the other) It was also awesome because I have gotten such a great chance to pick my own version instead of having been raised only one way and possibly risk feeling obligated to stay in that one denomination.

Anyway, I am becoming more bold in my faith and it's been a pretty amazing journey to get here. Bittersweet, for sure. For much of my young-adulthood (late teens to late 20's) I put God on hold. No, really. In a quiet moment I had a little convo with Him and said, "I do believe in You but I am not going to follow You right now. I'm gonna do what I wanna do and I'll get back to You later." And that's exactly what I did. I was ASTOUNDINGLY selfish during that time. It wasn't that I didn't care about other people, but that I was so stuck in my own desires that it never even occurred to me that my actions and choices might be hurting others.

I was living a life of "better to regret what you've done than what what you didn't do" with the added belief that while I might learn some things the hard way, I wouldn't ever REALLY regret my choices. How silly & stupid youth can be. It's okay though: while I do regret how slow I was to figure some things out and how easily I gave myself away (in more ways than one), I am working on forgiving myself and trying to see the bigger picture of my foibles.

Wait. I shouldn't say "forgiving myself" so nonchalantly. It's real and hard process. Mostly for all of the classic reason why forgiveness is always a challenge: I don't feel I deserve it, I don't know how to do it, I don't know what it's supposed to look like when I'm done, etc. And what about the things I thought I'd forgiven myself for but that still creep into my mind lat eat night and eat away at my sanity and sleep? But see, here's exactly WHY I am beginning to realize that I am precisely where I need to be in my life and all of that has to do with my new "tack" of turning to God in all things!

Here's the BIG POINT that led me to make this post today:

IF I had not had SJS I wouldn't have met Megan Johnson. She received a forwarded mass-email prayer request from a friend who wrote, "this person is in Atlanta - maybe you can help out with this?" To which Megan replied (in thought) "yeah, right! there are 5 million people in metro Atlanta!" And to which that God-voice in her head said, "No, you CAN help with this person." Long story short: she found out we live only 1.1 miles from one another and the hospital I was in was only a quick trip down DeKalb Ave from her house. She came to pray over me in the hospital, she had people at her church pray for me, when I got home they brought us meals, she married Jon and me AND she was my main link into life after I was homebound by driving me to rehab appointments and also bugging/encouraging me to join two different bible study groups that I otherwise wouldn't have even known about and definitely wouldn't have stuck with had it not been for her persistence!

And now I am an active participant in her church's activities like the evening worship service, Last Call (great name, huh? we go out for pizza and beer afterwards!), the Women's Ministry Team, the past two Women's Retreats (which were wonderful experiences) and now Jon and I will be joining Clairmont Presbyterian soon! But wait, there's more! If ALL of those things had not happened, including and especially if I had not gotten sick, I would have probably never gotten to experience so many wonderful people and thing, much less the personal growth that has happened, including learning a HUGE lesson about forgiveness last weekend.

Namely, that Forgiveness and Reconciliation are two different things. Reconciliation is not truly possible without forgiveness but forgiveness can (and should always) happen regardless if reconciliation is possible (or a good idea). This lesson has freed me up for so many new possibilities! I am preparing myself to forgive myself knowing that I am free from the fear and burden of having to reconcile with my "old" self. (Note: I am STILL ME, the me I have always been at my core. I am just a better-edited version now)

This also frees me up to forgive so many other people whose "trespasses" against me, and the pain and resulting disappointment I have had a hard time letting go of, can finally be released. Wow, what relief! This means I can learn from the past hurts but that I don't have to be hung up on the notion that they have to make amends with me before I can move on. I don't have to be stuck in this ridiculous and festering limbo anymore.

So, to get all churchy on ya: if it weren't for God's amazing grace and the forgiveness He's given me despite my so-not-worthiness, I don't believe I'd be able to pass it on to those who may not be worthy in my eyes, but are in Jesus' eyes. Everybody wins! How freaking awesome is that?!?

Totally random things that have been going on in my life as told via copy and pasted FB posts...

...thinks I'm gonna actually do a half marathon (WALK - no running for these poor hips!) in Wisconsin in September to raise SJS awareness and to meet some other SJS survivors! How exciting/scary is that!?

Its probably ignorant bliss, but I probably won't really train beyond my regular walks. Although I should probably at least start tracking distances so I have an idea of what 13.1 miles really means!
I still have my European "we walk everywhere" spirit and I've walked the crap out of some places (Paris, Hamburg, Lübeck, not to mention my own old stomping grounds of Stuttgart, Bad Canntatt & Asperg, etc. & more recently Atlanta & Savannah)

I've never done any kind of run/walk before. Does that matter? I'm looking at the info page for the 1/2 marathon and it doesn't make a lot of sense to me bc I don't know the lingo.

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...has happy news, too: Coen has become a total snuggler, always hugging and kissing me now. For a long time I was "chopped liver" versus Jon who always got a standing ovation for entering the room, but now that Coen's learning that we aren't one combined person (me & Coen), he's seeing how awesome I am and he's showing his appreciation for my amazingness! ;)

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...knows some RMWC alumnae won't like me for saying this, but I feel I must: While I understand & appreciate the main reason for boycotting the Reunion, I'm afraid you're not realizing that you're ultimately sabotaging US (& yourself) by forcing people to make a choice (therby a creating a rift) between places & people. I really, sincerely hope you'll reconsider & at least come to the Dell party on Saturday if you can.

It's not that I want to see the old place - I've actually been back already since the change and it was while classes were in session, so I saw the boys "in action" as it were. I want to see y'all's faces.
But, as you said, it your choice (of course) - but I couldn't not say something. It weighs so heavily on my heart.

Actually, there is an organized effort (more than one?) and I've read other people's status updates that use the word boycott, so I don't think I'm putting words into people's mouths.

I completely agree with you, Melissa Belitto. I didn't mean to sound so totally critical of the 'boycotters' - I really do know how they feel because I also am still very wounded by the choice to essentially close the school as we know it and more so by the way in which it was done. I felt they did nothing short of emotional blackmail with all of the threatening mailers they sent. Which, I mentioned directly to the board when I was at the alumna business meeting in Sep '08. (And was thanked for saying by some of the board members - which tells me that the whole proces,s and even those immediately involved in it, was torn and complex)

...will clarify: my comment was only directed towards those who've specifically said they're boycotting it &/or participating in what seem to be multiple "unofficial reunions" taking place that same weekend in Lburg, vs those who can't attend for other reasons. I respect & understand your reasoning but the result is inherently flawed bc it splits us up, missing the whole point of a reunion, which is my ONLY point.

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...has wanted to adopt ever since I was a little girl. Now we're blessed with a child of our own & I still wish to do so. I'm starting to research adoption and everything that comes along with it, so I'd love to hear any stories you may have as being either an adopter or an adoptee (are those even the correct terms??). My ears are open!

Thanks everybody for all your support and contacts! Just so no one is getting too excited, we're probably still at least a year away from beginning the actual process. Right now we're just getting the lay of the land :) but all of this is super helpful!

Dear Heidi,
Congratulations on becoming a Mommy! It really is a blessing :)
Please take your time in gathering the info... we're still a ways out from making any major decisions, partly because we do have one child (a 15 month old) and we're just in a phase of looking at our options of how to add to our family.
I have always wanted to adopt, ever since I was a little girl, and that didn't go away, even after we had Coen. I have some minor health issues (bad joints, fibromyalgia, fatigue issues) that made Coen's birth a miracle and how the idea of being pregnant while chasing a toddler is very overwhelming, so that would be another benefit to adopting.
I do feel called to adopt a slightly older child (over a year old but probably not older than 2) and because we want to keep the birth order, we'll have to wait until Coen is a bit older.
Anyway, I really appreciate your offer to help and guide us but don't let me barge in as you settle in with your baby - so take your time!
Thank you,
Kate

Thank you for being so concerned - it's definitely not all roses and cakes out there! We do want to keep the birth order with Coen as the oldest and I've already thought about how old he might have to be in order for us to adopt an non-infant and have Coen be able to grasp and appreciate what is going on because this decision affects ALL of us (even other family members like aunts and grandparents). It would be selfish of me to think that Coen will just "get over it." I have watched many episode of the "Adoption Stories" series and other documentaries and the one that stood out to me most was one about a family that already had a son who was probably in his early teens (or just before) when they adopted a only slightly younger boy from Russia. The adopted boy had severe problems that were really putting a HUGE strain on each family member, not least of which was the bio son who said, "he gets all of my mother's attention because he has all these problems. It's like I don't exist!" And I could tell this wasn't just rivalry but real pain. I would never want to do that to Coen (or myself!).
I think we'll probably get a child who is older than 9 months but younger than 2 because I feel the babies can go to Moms who can't have their own. I can take a slightly older child who, as they age, will have less and less opportunity to be adopted. I kind of want to be that person that catches them before they completely fall through the cracks in the system. That's what I feel called to do.

Definition

It is a common complaint among SJS/TENS survivors that it is typically described as a "rare" condition, when it is our feeling that it is not only NOT rare, but we believe to be ever-increasing. It is horribly misdiagnosed (I was, TWICE) and when it is diagnosed, often not properly treated or reported. One reason I believe it isn't that rare is that I have noticed more of those creepy drug commercials on t.v. including vague descriptions of SJS in the warnings. The wording they choose really runs the gamut, from "serious rash" to "potentially life threatening skin reaction," followed by "see your doctor immediately."  


I receive a monthly Google Alert for anything containing the keywords "Stevens Johnson Syndrome" or "Toxic Epidermal Necrolysis." What usually arrives in my inbox is usually a combination of new drug warnings that include SJS/TENS or a story about a law suit or someone's death. 


So in-between inconsistent descriptions of SJS like, "rash (may be serious, eg, Stevens-Johnson syndrome)," "Bullous dermatologic reactions" and "exfoliative skin conditions including Stevens-Johnson syndrome" - there are people's real experiences, "SJS Made Me Look Like a Dead Man," "Judith Matthews Cronmiller, 64, of East Lansdowne, a registered nurse, died Saturday of complications from Stevens-Johnson syndrome, a skin disease." and "Kay Thornton, of Mississippi, lost her sight in 2000 when she came down with a case of Stevens-Johnson syndrome."


That last one cracks me up - "came down with a case.." - like it's a cold. That makes you go blind. And the one description that calls it an "exfoliative skin condition" makes it sound like it's no different than getting a facial peel done at the spa. 


It is apparent to me that no one is really holding these pharmaceutical companies responsible, not even to come up with a consistent and CLEAR definition of SJS. Is it just me, or is this plain WRONG?






The drug warnings were referring to the following medications:
Anti-Depressant, Alpenzin  Source
Muti-use, Gleevec (was approved for use in 8 different disorders... and despite having an SJS warning, the article is about the drug being awarded as best pharmaceutical product)  Source
Diabetes medication, Januvia/Janumet  Source


The real stories were from:
Dead Man
Judith
Lost Vision

Smoke

It has now been over 6 months since my (step)Dad, Holger, died unexpectedly of a heart attack. He was definitely one of those people who you would think was going to live forever, or at least certainly not die so young (he was only 48).

I'm sure my grief is nothing special - many people are really feeling this loss, but my memories of are unique, as experienced by me.

I remember nights on the back porch of whatever house we were living in at the time (we moved a lot), Holger would come out and share beers with me and whatever guy I was dating at the time (hey, remember, moved a lot) and bum cigarettes from us.  I think he enjoyed feeling like he was breaking the rules, remembering the rush of teenage rebellion and of course we were happy for the free and good quality beer versus the usual crap we had.

It was a fair exchange and Holger was always fun company. All of my friends always liked him, even if they were a bit intimidated initially by his height and deep Schwarzeneggeresque voice. I bet many of the guys had images of the bad guys in Die Hard in their heads when they heard his voice on the phone. And his accent wasn't even that strong.

I miss him so terribly much. I have to stop myself from thinking about all of the future events he won't be taking part in. Coen's first Christmas. Johannes getting married. And late night, beer-buzzed and smoky chats on the back porch of whatever house we're living in.

No, really.

I am SO loving this website Things My Date Really Said Last Night