The Intersection of Faith and Family Building: Part Two

Writing this part was much harder than I imagined it would be. It still feels very unfinished to me. There is no way I can describe the most intimate corners of my struggle in one part of a blog series. I’d never arrive the series to its intended end point. I suppose it remains that endings are merely finished beginnings. I’ve decided some of the work I’ve been doing here will be the beginning of the fantastic new adventure of working on writing a book. I’ve always known I’d do it someday. I’ve been hearing I should write a book since the third grade. I wrote my first poem before I even knew how to form letters. I am undoubtedly gifted with words. It’s been confirmed and affirmed again and again. I know words as they know me. It’s simply that, as I’ve said before, I’m famously unpublished. I never believed that I wasn’t a writer however, I still question if I’m ‘worth’ publishing. But I will write anyway. I will finally take the risk – because in the words is where I am known.

Two and a half years ago, sitting in a doctors office listening to very disappointing news, something clicked in my soul when it shattered onto silence in the form of tears coming from the face of the doctor in front of me. The doctor who had to tell me the hard-to-say words. A summary of words that word spoken over the course of three appointments: It goes against my hippocratic oath to recommend you carry your own child. It goes against all the evidence I have in front of me to suggest you try to harvest your genetic material, and in fact some of that evidence would contradict that oath as well. We will have to explore other options. Then she said three words that changed my life. Third Party Reproduction. I knew the instant those three words were uttered exactly where my story started. I finally had the story worth writing! [Internal ‘gut check’ conversation: “It’s such bull crap that I believe this is the first thing I have worth writing about. Just because this is the first thing I have that could potentially be a best seller….c’mon, Kate, seriously? You’re better than that! Really? Why did it take this long? Why did it need to be this big?…It didn’t. Don’t believe this. I mean, do it, write it, sell it. Achieve the Dream. But don’t you dare believe it this is where your story ends. Or even where it started. You have so much good stuff worth telling inside of you…you are a writer.]

This Third Party Reproduction stuff was straight out of a Lifetime movie and it was happening to…me. As a famously unpublished writer, thirty-five years in the making, I’m stammering as get this next part out. I’ve come upon this crash of these separate areas of my life – faith and family building – unprepared. I’ve spent incredible effort keeping them on separate plains; I never saw the crash coming. On the night Addie announced her synchroblog for the Night Driving release, I was sitting in the rubble before I knew how it happened. The crash that happened then is under a heap of history that needs to be told; if for no other reason than – “I have never“…”told the whole thing.

Please stick with me, especially if my list of ailments isn’t your thing. History informs the present because of what we have learned. The bits of history I will touch on in the next two parts of this series are not especially crucial to our Team Dream Baby journey. However, the piece that matters is that I’ve lived through “what came before” to continue writing this unusual legacy of love. My health history, twisted and complex, put down a lot of the roots for our path to parenthood even before we learned the finality of the issue that prohibited me from becoming a mom by traditional/biological methods. Since “normal” is not the type of game I like to play, when we learned what our options to achieve parenthood looked like, I pretty much faced it with a “Challenge Accepted!” response. While my heart was heavy with the weight of disappointment that it would’t be more “normal”  – it felt so much like it fit for me. I do the unusual things usually, so why not this too? The winding road of medical mystery that began when I was a tender teenage girl has turned and turned and turned. From the winding emerged a woman who knows no more about where the road will end than she did when she was fourteen. But let me tell you some of how we got here:
Grab your flashlights, Brave Souls. The lights are about to go out again.

The Intersection of Faith and Family Building     Part Two: Chronic Pain Chronicles

Sixteen years into our relationship, my neurologist continues to shake his head at me and call me an enigma in our regular appointments. He’s basically been doing that since the day we met. I baffle really well trained intelligent medical professionals on a regular basis. Sometimes I joke that part of my purpose in life is so they don’t get big heads and think they have all the answers. Though it’s a joke mostly, there is a space in my heart where – having baffled teams of doctors at The Mayo Clinic and several University Hospitals and all the specialists I see – it also feels like a genuine part of why I’m here. I’ve made peace with it over the years but it wasn’t always so easy to joke about it.

In 1994 at what was then, Children’s Memorial Hospital in Chicago, two days before my fourteenth birthday, I was spun into a tornado of testing that plopped me quite roughly into a very big and equally vague autoimmune disease bucket. All because of a little blood test that revealed a high Antinuclear Antibodies (ANA) level. At that time I started following regularly with a rheumatologist and allergist due to my unique and most concerning onset of symptoms, which were hives and massive swelling. Over the years, that big “autoimmune bucket” has developed into a list of diagnoses rivaled only by the list of medications I’ve taken to treat the diseases and pain caused by them. These vague autoimmune bucket diseases and the regimens of drugs (mostly steroids, which often are worse than the symptom they are used to treat) ruined my young body. I have, for over half of my life, dealt with daily chronic pain. Fatigue so bad I could sleep for four days at a time without noticing or being able to care. Several hospitalizations. Long periods of time where I couldn’t even get out of bed. For months.

As a sophomore in high school, age sixteen, I landed in an Emergency Room for blinding pain that turned out to be ovarian cysts and endometriosis. This required the addition of a gynecologist/surgeon to my growing cumulation of doctors. I had three surgeries for cysts and endometriosis before I was twenty. At thirty-five, the surgery count on my female region is up to nine. I have pelvic ultrasounds more frequently than most people go to the dentist. I am looking head-on at the devastating potential of an “any day now” partial or full hysterectomy the next time my lady bits misbehave. (I must insert here that for the last several years, my goal was to make it to thirty-five before I needed a hysterectomy. Now having passed that finish line, I feel relieved. I’m still young for a hysterectomy, but not as young as I could have been.)

Meet 1998/99. It was supposed to be the beginning of my life. I was a seventeen year old college freshman. My career as a journalist was at my fingertips – only four years of college and then I’d write things that mattered for real. No longer would my writing be confined by youth; stuck in district writing competitions, small local papers, school newspapers, or my own journals. It would be trained and honed. Polished. Professional. In four short years I’d be a degreed writer whom people would take seriously. Rather than leaping into a brilliant career as an award winning journalist, I got slammed with a new symptom. Headaches that never went away. At the onset, I was so debilitated by the pain I was forced to quit a college I loved only having been there for five weeks. Instead of experiencing classes, all-nighters, and the “freshman 15” I moved back in with my parents just before my eighteenth birthday (le huge sigh). I took time off from college and got 15-20 injections of steroids into massive trigger points and nerves in my head every other week in attempt to manage the pain. At that time, I added a neurologist, various headache specialists, and a pain management doctor to the line-up of medical professionals I was rotating into the field of me.
In 1998, age eighteen, I was officially diagnosed with Systemic Lupus Erythematous (SLE). Shortly thereafter came a strong suspicion of Multiple Sclerosis (MS) for which I am continually monitored. But here’s a kicker to the MS pseudo-diagnosis…since I only have one lesion on my brain I don’t get the official diagnosis (not that I need anymore of those) or any of the treatment protocols involved with MS, just some of the bizarre and life-altering symptoms. This diagnosis and pseudo-diagnosis confirmed I had been correctly plopped in that vague bucket of autoimmune disease years prior. Eventually, I returned to school part-time at a community college while learning how to navigate the headache that never ended.

I determined pretty quickly (in that short five weeks I spent in the first ‘real journalism class’ I took) that I likely did not have the competitive nature that journalism would require. So I took my time at community college just gathering the pre-requisite classes I’d need for whatever I got a degree instead of the journalism degree I frankly couldn’t hack. It wasn’t really the time for figuring out what career I wanted to pursue anymore. Life was reduced to trying to get to the bottom of whatever was causing this headache and make it go away. I tried so many different medications during that time that I cannot even list them all. Nothing worked. I was diagnosed with Migraine, Occipital Neuralgia, Chronic Daily Headache, Tension Headache and probably some other types of headache like-things I have since forgotten.

The headache monster became so intense and disruptive, that one year into my second-fiddle Elementary Education degree at Northern Illinois University, I underwent surgery to have a Medtronic Neruostimulator on the nerves in my cervical spine. My nerves were seriously messed up and responding to the pain by creating more pain. It was a vicious cycle my body couldn’t stop on its own. At the time, these devices were mainly used in spinal injury and chronic back pain patients. There was little evidence to support the use of this type of system in the cervical spine. It wasn’t experimental, per se, but I recall significant conversations about the risk/benefit factors involved. In addition to hours in conversation and consideration, I had to go through a six-day trial period of using an externally controlled device before they would do the full implantation. I walked around for those six days with wires visibly hanging out of my head. I couldn’t shower. I covered my greasy hair with bandanas and only went places that were absolutely necessary.

The pain management doctor I was seeing at the time was as hopeful about the outcome as he was aggressive about treating my pain. He explained that the Neruostimulator would work by interrupting the nerves with an electrical signal. Instead of the pain sensation that had become their habit, the hope was to distract my nerves enough so that my brain would perceive these electrical signals and feel that sensation instead of the pain. If it worked, my laymans understanding gathered that it would be trickery at its finest. In late May of 2002, they put me in a gown, shaved part of my hair and cut my head open in three places. They placed four sets of leads onto the nerves they had identified as malfunctioning. They also cut open my right side (just above my ribs) where they put the titanium battery that powered the leads which sent the stimulation to my very confused cervical and occipital nerves. Two more cuts were made on my shoulder/upper back where they were needed to feed the wires to connect the battery to the leads through my body. This device came with a clunky remote which allowed me to turn the system on or off and to adjust the level of the stimulation within preset parameters define by the physician and Medtronic technical support folks. Basically, I felt like a robot! One of my friends in college nicknamed me Vicky.

It wasn’t brain surgery. But it sure wasn’t easy either. There was a part of the surgery where they had to wake me up to make sure that the leads were placed correctly. For me the experience of surgery is usually a giant blur, but I remember that moment as though it was yesterday. Recovery was a bitch. I had to wear a neck brace for a couple weeks while the incisions healed and at first there was so much pain from the surgical sites I was deeply discouraged and doubtful about the outcome. But you know what? It worked! The pain from the headaches reduced by a little over 50% and I could function (somewhat) normally again. For the first time in five years I felt a little bit like myself again. Trickery at its finest, indeed!! I started my 2002/03 school year with hope for a year of less pain.

One morning in early September of 2002, I was putting my hair in a pony tail before class and there was a sharp tearing feeling in my head. Suddenly the electrical stimulation I’d grown accustom to feeling on the base of my head was not where it was meant to be. The lead shifted and pulled the stimulation down; the sensation moved to the right side of my neck and down into my shoulder. I ran to my bedroom to get my remote. I shut the system off. I called the doctor. I went for in depth fluoroscopic x-rays. I didn’t need them to tell me that/where the thing had moved. I knew exactly where it was. Sometimes I can still feel it there in the side of my neck where it didn’t belong.

The first revision surgery was in October sometime. They weren’t able to get the electrodes back to the exact place as they had been the first time. As a result a percentage of the pain came back. It was still manageable in comparison to the pre-implant pain, but I was so mad about it. While it was still better than before the implant, it wasn’t as good as the first time. The first implant had reduced the pain roughly by half. It was still a lot of pain. It just wasn’t life-halting pain anymore. Before the revision, I had been given four months of very necessary relief. Simply putting my hair in a ponytail robbed me of the half as good that I felt from the first surgery’s 50% pain reduction. To say that dipping again below that 50% improvement mark felt unfair doesn’t do justice to the emotional hell it was reconciling with this new less-than-half-better pain reality. I can’t tell you how long it was before I attempted a ponytail again after that first revision surgery.
When the leads slipped again in late November we scheduled the second revision surgery for December after fall semester finals concluded. The following February the lead slipped a third time and my very frustrated pain management doctor admitted he’d reached his limit. He called in reinforcements in the form of a skilled neurosurgeon familiar with Medtronic systems. We consulted his training and wisdom for a better solution. The neurosurgeon decided it was best to redo the whole damn thing. This fourth surgery consisted of re-entering the thrice entered surgical sites on my head and shoulder and re-opening the side incision. For the fourth surgery, the neurosurgeon would insert a small clip in the place they assumed to be causing the trouble with the slipping leads.

In my second semester of student teaching clinical, while I waited for that fourth surgery to take place, providence would have it, I got into a pretty terrible car wreck. I never saw it coming. The driver of the other car had pulled out of a street parking spot and T-boned my tiny favorite green Honda Civic on the driver side. It was a snowy February morning before 7am on a college campus and we were both issued tickets for the crash – me for failing to yield on a left turn; him for having not cleared off his windshield. To this day, when I replay that moment over in my head, I’m positive he was not there when I started my turn. There was frost and snow on his windshield when the police arrived on the scene. We were both at fault according to the report, each responsible for our own damages. One of the officers told me that he was pretty sure my account was correct and that the other driver pulled too quickly out of a parking spot without clearing his windshield.

My already pained body hit its physical limit that day and synchronously an emotional one. It is a day that is burned on the memory of my soul. There was the glass in my eye from my head hitting and breaking the driver side window, the blue suede shoes (cue: Elvis singing in my head in the middle of all of this) the driver of the other vehicle had on his feet, and my most favorite car getting crushed beyond repair. There were the jaws of life and that loud sound they made tearing my tiny car open. There was the backboard. The neck brace. All the paramedics with their careful jolting movements of me. There was the burning pain in my shoulder that made my constant headache seem dull. The rest of me went entirely numb. I was absolutely terrified I was paralyzed until the CAT Scan result showed no issues. It was mostly shock, a little blood, and a really banged up shoulder that needed a sling for a few weeks.

Knowing I needed her to without me even telling her so, a treasured friend agreed to forget the accident happened (though she saw the whole thing unfold in front of her apartment building that morning) and shuttled me, as we had planned to go, to a weekend away at an InterVaristy retreat. She pushed my deflated still-in-shock-self around in a wheel chair all weekend. While I don’t really remember the retreat – there were undoubtedly large amounts of pain killers involved – I do remember the pain. The physical pain was secondary to the emotional pain. The end of my rope had become shreds, impossible to grasp any longer. I remember, after realizing I was alive and not paralyzed, this overwhelming sense of being relieved that the leads had already shifted. If they hadn’t, the accident would have likely cause them to shift. It was nice that the surgery to fix them was already scheduled for spring break; one less thing to worry about. I recall thinking that a variety of pain was a nice way to change things up from the monotony of only always the headache pain. The pain meds were also nice. They dulled the edge of the pain regardless the source.

While I didn’t recognize it as such initially, now I mark that weekend’s events as the beginning of the breakdown of my faith. It took years to completely break but it was then that I’d finally had enough. I had my limit of feeling the pure punishment of this unrelenting pain. I truly, madly, deeply believed in and loved a God who could heal pain. Yet that same God was not healing my pain. It felt like He was only giving me more. I concluded something must be wrong with me. I probably wasn’t worth healing. Conversely…maybe God had called me to this life of pain…for a greater purpose. Maybe I was meant to handle harder things than my peers. Maybe this pain was His Will for me. Over the course of the next several years, I wrestled with the dichotomy of those two lines of questioning in some pretty bizarre ways.

In hindsight I am glad that His protection was paramount to my emotional ending point. I’m pretty sure no one really knew how miserable I was inside during the next few years. I played them like I had everything together and I pursued God with everything I had. I was pretty sure no one had any idea that I had, in truth, challenged God to a duel over my soul. I declared an all-out war on the mistake God made when He created me and I dared Him to prove me wrong.

 

The Intersection of Faith & Family Building continues soon…
Part Three: Continuing Chronic Pain Chronicles

Preview:

The choices I made from 2003 to 2007 were really an internal litmus tests for God’s love for me. Did He really love me enough…to take away my pain? They were also a litmus test for my worthiness to be loved by Him. What was I doing wrong in my pursuit of Him that He didn’t heal me and restore my broken body?

After a failed attempt at graduate school in 2004 I was convinced I needed to change my focus. Maybe God was calling me to full-time ministry!! If I worked for Him full-time in a ministry role, surely that would make me worthy of His healing power!!…

… a decade of wisdom under my belt since I audaciously challenged God to a battle of wills over my very life – I now understand Him in ways I only pretended to comprehend in the days I lived a more ‘on fire’ kind of faith than I do now. My faith is woven through this rare medical mystery that lives inside this woman called Kate. I realize now that the events that transpired in the next phase of my life were not a war. God simply didn’t allow them to become the war [over His “mistake” (in me) that] I intended them to be. Instead, the next years of my life were filled with His amazing and powerful grace realized in new and profoundly simple ways.

Synchroblog for Night Driving/The Intersection of Faith & Family Building: Part One

Forgive this beginning. It’s a little rough. I planned on using part of this in a different format and couldn’t bare to change it. So I added and reworked it for this. I will eventually put it in its intended place on a support group at Inspire through Resolve. Only because I had already started writing it down was it even feasible to consider finishing it…which of course turned into (ahem!) the beginning of a whole series. I couldn’t get it all out in time for this amazing syncroblog book launch. This started as a plea from my soul for my current dark place: infertility. It is hardly the only dark place in my life, but it is the one where I spend the most time these days. When I learned about the Night Driving syncroblog for Addie’s new book launch; I instantly knew this writing needed to morph into the beginning of something very different.

Now, bear with me for a few moments as I do a quick unsolicited plug for Addie and her amazing new book Night Driving. Read it. It will be amazing. I’m sure! It’s impossible for me to explain in any other way: I’m madly in love awe with this woman!! I have a huge writer crush on her and maybe a little bit want to be her. (Addie, do forgive me for making it public like this! It’s just that everyone should know really – it’s been almost two months!) All jokes aside, as a writer I have so much love and respect for Addie. I identify intensely with her words. As I’ve read them I often find myself exclaiming that I could have penned them! I think this is partly because I am a writer. I think it is partly because I am on a very similar path of trying to untangle my own upbringing through the Evangelical webs she writes about so candidly in her first book. I think it is partly because I also struggle with Depression. Currently, I am inhaling her words like deep breaths. Every. Single. One. I’ve read many of her recent blogs and am slowly making my way through When We Were On Fire. With ever chapter, I am finding myself simultaneously angry (that I didn’t know about it two years ago) and overjoyed (because it has come in the “now” to encourage and prompt me forward at just.the.right.time). I didn’t even know Addie was alive until the end of January. Her bravery and candor have helped me – in so many ways – over the last (almost) two months. I feel more free in my own skin than I may have at any point in my life. It feels like her words have given my not-so-Brave-Soul enough courage to stop running around in the circles of the darkness of my own heart and finally just speak out. Into the darkness. Without expectation of finding light. That hasn’t been an option for me previously. I’m ridiculously excited to have this outlet for my story. I am without doubt that the timing of this has all been written by the Divine. While I know full well that Addie didn’t intend it so, it feels very much like this synrochoblg was designed specifically for me. It is the very push I needed to finally tell the story people have spent most of my life trying to convince me to write.

So grab a flashlight (if you need one) and join me, Brave Souls. The lights are about to go out.

The Intersection of Faith and Family Building: Part One


On Why I Need a Support Group

There’s a game we used to play in college called “I Have Never.” Until now I could have answered “I have never…joined a support group.” I’ve come to the point where I can no longer journey on this crazy road of infertility (IF) “alone.” I’m not alone, I know. Not really. My life is full of supportive people. I am blessed beyond measure with amazing family, friends, and framily (new word, you do the math!). I have so many people. I love all my people. It’s a pretty incredible thing to be able to say that even two and a half years into our IF journey, people I currently know and trust have filled my need for a supportive community. I am thankful for the myriad of blessings that last statement represents. Another key person in my support network is an amazing therapist. She entered stage left when my shit really hit the fan when I was a young teenager; dealing with the heartbreak of losing my first love. I was kind of forced there by my loving parents after threatening to end my life at the end of my 10-month-long first relationship. I tend toward dramatic, not gonna lie. But really, it crushed me then. It was a brilliant move on the part of my parents to drag 15-year-old me there that night to her office in my brown suede jacket. Since then, I have been able to see my therapist on a regular basis throughout every pitch black corner my life has been bent around. These days I drive 1.5 hours to get to her office at least every 3 months (often more). She truly is invaluable.

I know – I have always known – that support groups are available. I have recommended support groups to other people. I even have some training in how to run support groups from the brief time I spent in an MSW program. I just didn’t think I ever belonged in one. Or, maybe worse, I didn’t think I needed one.

I’ve had a very messed up view of support groups. (I have a very messed up view of a lot of things…). It’s safe to summarize though that I’ve never liked them much. While not always true, I’ve found support groups to be darker places than I can handle. Then again, I’ve never invested very much time trying to really belong to one. My past very minimal experience with them however, convinced me I needed to stay very far from what ever was happening in these groups. Now, I see it as a self-protective reaction to my narrow access of experiences. There was just too much darkness there for my naive and sheltered heart. My heart which only knew how to search one very narrow path to the Light; get out of the darkness as fast as possible. Go Into the Light. Finally, through many years of defining, losing, and then re-defining my faith, I think have found a doorway to enter into the darkness where I find my faithful and constantly broken heart. Support groups, at least one of them, will be very different for me now.

When considering a Third Party Reproduction option as the path to parenthood it doesn’t feel lonely but the opposite; I think it feels over-crowded. So many nights I wish it could just be him & me and a bottle of wine, like it is for normal regular fertile people. It can’t be like that for us though. So while we travel this path where it is leading us, even though we have a wonderful village surrounding us, I think I need to find a different village. I need a village on a journey that looks more like mine. Because when it comes down to it, I can talk to my my partner, my fertile friends, my family, my very amazing therapist, and every Target cashier from IL to Texas, all.day.long; at the end of the day I still wind up feeling alone and isolated. WITHOUT. Without a baby. Without the ability to conceive. Without anyone who really gets this place of failure and isolation I feel so deeply today.

Truth is though, I’m not sure I really even belong here. These IF support group boards are so full of people talking about cycles and embryos and transfers – successful or otherwise. Reading them makes me feel like a misfit toy. I have spots on my face, my buttons are sewn on sideways with the holes to fasten them together just out of my reach of my stubby little fingers.

One of the reasons I’ve stayed away from this space – support groups – is that I fear I will still feel alone after I reach out and make myself vulnerable. I’m praying I’m wrong. I’m hoping that my desire to enter into a village of people whose heartbeats resound in empty spaces instead of in screams of the children is met with similarly spotted faces. Writing this I know that even if I don’t find that here, even if I am the misfit of the all the misfits, part of me needs this step to move forward – to level up and begin the next phase of this amazing story that I’m in charge of writing.

Of course, if you know me you, you understand that to the best of my ability, I have sought to write my story only with the guidance and grace of the Great God of the universe. When He created this whole insane universe, vast and complex as we know it to be today, I have faith in this: surely He didn’t create my life outside His grasp of the very complicated things.
~~~
My blog is singularly focused on this relatively new Team Dream Baby journey. I don’t talk too much about my faith here. That’s been very much on purpose. Truth is, our TDB journey has been a HUGE part of the restoration of my faith. I have been processing in other places because of the controversial nature of how we are choosing to build our family. The use of the word ‘surrogacy’ causes a lot of waves in the faith-based communities of my youth. Really, surrogacy is just pretty controversial anywhere. [Challenge: Bring up ‘gestational surrogacy’ (use our story if you can’t find another reason) next time you’re anywhere just for kicks and comment on the questions that follow! That would be a really fun exercise!]

For those of you who don’t know me pre-TDB, there is a lot about my life that isn’t on the pages of this blog. It couldn’t live here at first. The rest of my life and this new crazy amazing adventure needed to be separate. They aren’t separate though and I’m kind of tired of forcing my faith apart from my future family. It’s exhausting. So I’m getting ready to run the giant flashing red light at the intersection of Faith & Family Building. I’m gonna cause a huge crash, and we’re gonna need a lot of Brave Souls to join the rescue crew.
If you do know me, you know that my faith has always – even when I lost it completely – driven my life. My faith is my compass, albeit the magnet a little loose. No matter which direction it points me, I always find my way Home. To the God who created me just as I am. Our future child is not where I place my faith, but the dream of him (or her) in my arms forces me to refine my faith even when it’s scary as hell and I’d rather just flush it all down a drain.
I focus on happy and hopeful things on the blog a lot. When you’re asking people to fund your dream, as we are, I don’t think it’s ‘smart marketing’ to be a negative nelly. I’ve learned so many new things on this path. For example how to self-host a blog, what a “synchroblog” even is! (I am ever evolving and learning this blogging stuff as I go. Thanks for the patience as I put it all together so slowly. Really, so BRAVE!) I’ve learned so much about Family Building options I never knew. I have woken a passion for the infertility community that I hope to expand upon in days and years to come. It’s been one of the best times of my life. It’s also been one of the most difficult and darkest places I’ve ever traveled. In a lot of ways though, I’m thriving in ways I never thought possible. I cannot genuinely tribute the hope and light I’ve found on this journey without describing more of the darkness of my life.

Please stay tuned for

The Intersection of Faith and Family Building: Part Two


 

My Life of Chronic Pain

Preview:

“… Sixteen years into our relationship, my neurologist continues to shake his head at me and call me an enigma in our regular appointments. He’s basically been doing that since the day we met. I baffle really well trained intelligent medical professionals on regular basis. Sometimes I joke that part of my purpose in life is so they don’t get big heads and think they have all the answers. Though it’s a joke mostly, there is a space in my heart where – having baffled teams of doctors at The Mayo Clinic and several University Hospitals and all.the.specialists I see – it also feels like a real genuine part of why I’m here. I’ve made peace with it over the years but it wasn’t always so easy to joke about it.

In 1994 at what was then, Children’s Memorial Hospital in Chicago (Now Ann & Robert H. Lurie Children’s Hospital Chicago), two days before my 14th birthday, I was spun into a tornado of testing that plopped me quite roughly in a very big (and equally vague) autoimmune disease bucket. …”

700 Days

Bit by bit our gestational surrogacy journey is taking shape. I’m constantly living in new states of awe-maze-met with the blessings we are experiencing on this bizarre and beautiful path to parenthood. There have been bumps in the road as well. The bumps have provided opportunity for us to reevaluate, reeducate, and renew our decision along the way. I’m learning the balance of it, finding a rhythm to how it will continue this path of tiny little trails or big daunting roads that we must to walk to the end so we can see the next step. It takes a lot of energy emotionally. I wish there was a “skip” button so we could move it along to the end. At the same moment though, I want to cherish every step because once walked, they are paths we may never travel again. The waiting it so difficult as there are still so many unknowns. We are learning so much about this world of Assisted Reproductive Technology and Third Party Reproduction and when I think about how much I knew when we were launched into this world, I’m amazed at my ability to take it all in and be where I am with it today. Merely stating that I’ve learned a lot doesn’t do justice to the knowledge I’ve gained roughly in 700 days.

Seven hundred days!! My estimate is rough but  at this point two years (730 days) ago we were still in the beginning of finding out our unique fertility challenges and hoping beyond hope that I would be able to carry our baby myself or at least that I would have DNA to contribute to it’s being. It simultaneously feels like that was a lifetime ago and yesterday. We know so much more now than we did 700 days ago, yet in some ways we have some much left to learn. I stop. I wonder. Where will we find ourselves 700 days from now?

Recently I’ve been thinking a lot on the fact that this journey may not go as quickly as we’d initially hoped. We have a very sizable financial goal to meet and while we are doing well with the fund-gathering efforts we’ve put forth thus far, the money bit is simply slow going. I often find myself wishing that an extraordinarily wealthy benefactor would drop down out of the sky and give us exactly what we need so we could get started tomorrow. Truthfully, in a deep down hoping place which has developed on this journey and has learned and works hard not to place any expectations or limitations on the dream, I believe that could eventually happen. We have come across such brilliant generosity financially to date. When I sit with that generosity, it overcomes me and sometimes I get giddy, sometimes weepy, and sometimes even completely mushy. Reality check: an extraordinarily wealthy benefactor will probably not be the way we will reach our goal. Our fund-gathering efforts have been so purpose-FULL and wonder-FULL that my heart can hardly contain the excitement I have for our next phase of fund-gathering plans!!!

Seven hundred days ago, I didn’t even have a vision in place for Team Dream Baby. I didn’t even know I’d need that vision yet. Here we are though, and today, as that vision changes and develops with each step of our journey, I must admit my heart gets so overfilled when I think about all the Brave Souls who have joined our journey thus far. My gratefulness is already unending and I cannot begin to imagine how much space I will need in my heart for all of it as we go forward. Reality check: my heart cannot actually burst from an overflow of gratefulness.

To all the Brave Souls who are already here: To all the Brave Souls who will join us soon:

Please know, each of you who plays a part on Team Dream Baby is uniquely cherished as the realization of our dream takes shape. We very literally could not be here without you and we are both endlessly grateful for your support and love!!!!

I want to take a brief moment before we officially launch our next planned event to welcome my wonderful new friend Brooke to Team Dream Baby in the most official way I’ve got. Here on the blog! (That makes it super official, right? RIGHT!) So, without further ado, Brave Souls, will you welcome Brooke with me? She’s our new Fabulous Fund Finding Coordinator (f3c) and based on our first few meetings and plans so far, I’m beyond excited about the energy and passion she brings to the Team.

Brooke and her husband Joe (whom I haven’t actually even met yet) were merely friends of friends a few months ago. They have an energetic four year old son, who was miraculously conceived after their own struggle with infertility. Brooke learned about our Team Dream Baby story slowly over the summer as I was often around the group of people who hung out in our mutual friend’s neighborhood.  She started reading the blog and instantly knew she wanted to be a part of our team. It’s amazing all of the ways she’s encouraged and changed our story in such a short time. She’s now working along side me to put a bunch of our plans into action. Her generosity seems to know no limits. Thanks Brooke, for all you’ve done so far. You’re pretty awe-mazing to me!! Here’s to the next 700 days!!

Awe-maze-ment

Every time in the last year I’ve begun to doubt our surro-journey, something amazing happens. The run of garage sales we did in June exhausted me to my core. There was a regretably memorable 48 hour period in which I was completely convinced everything was falling apart. I was honestly considering giving up completely. Thirty three of those 48 hours were spent awake and I was so sleep deprived from preparing for the garage sale already that I experienced what my sweet R.N. sister identified and diagnosed as a “nervous break down or something very close to one.” Never having experienced a nervous breakdown before, I can say only two things: I hope never to have to confront that monster again and I’m genuinely broken for people who deal with anxiety, nervousness, and panic in daily situations in a different way than I have been before. This was not a lesson I necessarily needed to learn the hard way. Looking back though, I’m glad I had the experience. It certainly gives me a new ability to empathize with a population of people that are still very mysterious to my extroverted, trusting heart. 

After my nervous break down, which fabulously collided with the last day of our sale, I experienced some of the deepest moments of doubt about our surro-journey I’ve had yet. The doubt was so great at one point that I wanted to toss the baby out with the bath water [where “bath water” represents the success of our journey so far] and forget the whole thing. I was a hot HOT mess. The hopelessness (holla to all the IFs out there) felt like it was going to swallow me.

Less than two weeks after the end of our last sale, I had yet another ultrasound to examine my misbehaving uterus. It’s growing polyps already, after having a D&C this past March. We all know it’s nothing  more than a ticking time bomb at this point. I’ve just had this unreasonable ridiculous goal of not needing a hysterectomy before age 35. I was so worried I wasn’t going to make it since it’s rounding the bend here pretty fast. 

Just a few hours before my appointment for the scan, my hope was refueled by a very unexpected potential on the egg donor front. I found out that friend of a friend’s mom’s neighbor may be willing to donate an egg. 

I cried huge happy & relieved sobs of joy all the way to my gyn’s office. Hope was no longer less and in fact, in that moment it was so much more than I would have ever imagined possible. A woman, who is and will remain a stranger to me, made a selfless, generous, life-changing offer. Whether or not the details of this offer flesh out, the very moment it was offered the ending of our story changed. Simply because I did not give in to the overwhelming sense of hopeless.

A lessor “plot twist” might have persuaded me from giving the hopelessness a lasting foothold. But then I won’t ever know what might have been without it. For that, I’m imesurabley grateful. Because this is – though it feels very much like a dream or a movie scene – for real. It was dramatic. It was perfect.

(The details of the possible egg donor are not all ironed out just yet. It is a very in-process offer on the table of our Team Dream Baby future. Stay tuned for developments. This will all take some time to investigate. I’ll update as it becomes relevant.)

I’ve known since it began that our journey to parenthood is not an A to B sort of journey. Our Z – our ending – isn’t clear. There isn’t a 1-to-1 correlation in this gestational surrogacy thing…or really in parenting…ever – no matter how your journey got started! 

We have a list of questions that seems to get longer with every one we answer. Majority of the time though, the answers are leaving me in contastly new states of awe-maze-ment. (Yes, I did make that up. It’s gonna be like YOLO in a year, just wait!)

No. Matter. What. Happens. I stand in awe-maze-ment of this journey and the story of joy it is writing in my soul with each itty bitty baby step. I am classically an over achiever so I say this boldly without the actual experience to back me up: I truly believe parenthood is simultaneously the most difficult and most rewarding journey of life. 

P.S. My uterus “passed” this most recent exam. We revaluate in October. After I turn 35. I do so love to achieve my goals…even if is by the skin of my teeth. Here’s hoping for no emergencies until after my birthday!

The Promised Update  

You wouldn’t know so by my absence from posting, but these last several  months have been full of bustle and hussle in Team Dream Baby land. Lots of things have changed and lots of progress has been made. None of it is very tangible or visible yet and discouragement is never but a breath away. This is not an easy adventure, Brave Ones. We’re so glad you’re traveling it with us!! 

This winter, I embraced technology anew. I familiarized myself with the growing and vast world of virtual garage sales. I sold a bunch of the donated stuff to people and met them in various public parking lots in the NorthWest Burbs & beyond to the boarder of WI. Safety first, folks!

I bought a domain name, found a webhost, and learned (well, still learning) how to self-host a website. Note I emphasize here the still learning bit. I also researched (and very nearly launched) an online crowdfunding campaign. There was one hicupp after another on my technological learning curve…just when I thought I had it all figured out, something new popped up in a little window on the sidebar with arrows flashing. Oie! 

The crowdfunding idea was not all as easy as I hoped. So for now, per advice from a lawyer we hired to advise in the legal implications of crowdfunding in our unique situation, we’ve suspended the plan to crowdfund. It may resurface in the future. We’ve decided that for now, we’ll take the fundraising bit at a slower pace. We aim in the next six months to build the Team Dream Baby up strong so that if or when we hit a crowdfunding platform, we’ll be in really good shape for that run! 

Right now we are in the thick of non-virtual garage sales. Two weeks ago we had our first of 2015 and that pulled in a pleasing dollar amount considering the crap-tastic weather that met us for 1/2 the time. We have been abundantly blessed with donations to sell and its been super overwhelming. Right now, our garage resembles an episode of hoarders and we are forced to exclusively use the  front door in order to exit or enter our home!! (Oh! The horror!!) 

The second 2015 sale will begin this Thursday – there is rain in the forecast again. I found myself hopefully singing along with the Dad & his toddler son in the Target parking lot during a downpour today – Rain, rain, go away!!! Team Dream Baby wants to play!!! Come again, another day!! And…please…if you may…let that not be before Sunday!!