A new Support Group?

My mom sent me an email a couple weeks ago about a woman who approached her and wanted to start an infertility support group.

My mom runs a parent education program for new moms to attend with their little ones. It is an amazing program that she started twenty five years ago. I could brag about my mom all day long, she really is an incredible woman who has helped so many thousands of new moms grow into beautiful loving supportive parents. Her program is like the one stop shop for all new parents in our community, and absolutely everyone knows my mom. Because she talks about me and my sisters in all of her classes, and has our pictures up all over her office, everyone also knows me.

So anyways, I'd thought a lot about whether or not it would make sense for her program to host an infertility support group. Her program is so loving and supportive, and although it is a center designed for moms and babies, it somehow seemed logical that it would be the perfect place to host a support group. The nearest RESOLVE group is hours away from our little community, and although I don't know anyone else here who shares our struggle, I'll bet that we are not the only infertile couple in town! 

The challenge I struggled with was whether or not I would be able to actually engage with a group that was offered at my mom's program. There would be no anonymity. If I attended, everyone would know who I am. Regardless of agreements of confidentiality, anything I shared would inevitably seep its way into the small town memory where everyone knows everything about you. As much as I'd love to have a group of infertile friends who I could meet and share support with, I concluded that it was a little too close to home for me. And really, even if I could have reconciled the other issues, I just didn't have the energy or capacity to start and facilitate a group.

But then when I got the email from my mom about a lady who was going to start up a local group, I got really excited. I wanted it to start meeting right away. I wanted to meet some local friends who understood, who I could get together for lunch with, or go for a walk with. It seemed so perfect.

So yesterday I opened my email to get another email from my mom with a flyer attached for the support group. I downloaded the pdf. It was a double sided trifold, a little overwhelming to start with. It announced a new Infertility and Adoption support group that would meet once per month. It had a few quotes from women mentioning isolation. And then there was a statement saying that "babies are welcome, as always".

I caught my breath when I read it. I mean, this place where the group will be held is designed for moms and babies, all of their classes and programs welcome babies. It is like the most supportive welcoming place for babies. So I don't know why I was so surprised to see that... but I was. 

I kept reading. There was a description of the group, and it talked about infertility and adoption. Then it talked about parenting issues that adoptive parents face. Then it had a very brief bio on the facilitator that included a statement about how she is adopting a baby thru the local adoption center.

I know that I am super emotionally sensitive, but my god, why am I so bothered by that brochure. I read the brochure and thought immediately and instinctively, this is not a group for me. This is not a group for infertile people. To clarify, this group sounds awesome for infertile people who are at a very specific place on their journey, and it is a place that I am just not at.

The thing is, my mom sent me the flyer to get my feedback. So I replied with a few of these initial thoughts. It sounds like it will be a great support group - for parenting after infertility. (and I totally think that is an important and necessary topic!!) I guess I just feel like it is too presumptuous to assume that we will all need that kind of support. 

This has all settled into my heart and stomach in a funny way. an unsettled way. I think I wanted it to be something else. I wanted it to be something for me. So here I am with a funny feeling. Should I go to the first meeting, and see how it plays out? It might be awesome, and give me hope for the future. Or it might be terrible and leave me feeling assaulted. (Where did that word -assaulted- just come from? I just typed it out, and there it is.)

I'll talk to my mom, she knows the facilitator lady and will probably have a better assessment of her intent, and maybe we just need to change the flyer. Maybe I am just a basket case.

Journals from the Past

I reflected last week on the year anniversary of our first Semen Analysis and the devastating diagnosis we received. I've come a long way since then. At our Resolve meeting last night, yep I went again and it was awesome again, I was surprised by how confident and relaxed I felt. Today as I clean out some old files on my laptop, I opened an old journal to find some entries from last year, right after our first UR appointment. It's pretty powerful to read, and again a reminder of how far I've come on this journey. I wanted so much to share this with someone last year, but I wasn't ready to be so open. This seems like an appropriate place and time to share. Here goes....

I read everyday, but haven't been able to write. I want to contribute to the discussion, but I am struggling with balancing the need to connect with others who understand this experience and a strong desire for privacy. Even with screen names, the internet feels so public. 

We had our first consult with a reproductive urologist. I felt like an idiot, barely able to communicate, and definitely not strong for my husband. I had written out a list of questions in advance and actually handed the list to the Dr. My husband was great - following the discussion and asking relevant questions. I just sat there with tears running down my face. I'd prepared a letter to the Doctor and his staff to have put in our file, introducing my husband and I, reminding him that every interaction with him or his staff was highly emotional and stressful for us, asking for help in understanding the financial cost of any options that were presented to us, etc... and it had our picture on it. At the very end of the consult I handed the Dr the letter and it was like a lightbulb came on. He brought the patient coordinator nurse into the room to meet us, gave us the card for the financial counselor, and encouraged us to make an appt with the office counselor. The doctor was great before the letter, but after reading it remembered the humanity of us as a couple who were scared and in pain.
We are now waiting for results of hormones and genetic testing. I am putting all of my thoughts into hoping that the results show that we are lucky enough to move forward with a TESE, and trying to brace myself if that is not an option.
Speaking of bracing myself, I got a massage last week and realized that I was actually physically bracing myself for some sort of impact. As I started to relax, I started crying. I want to be strong for my husband. I need to hold it together at work. I honestly don't want to talk about any of this. But it is constantly swirling in my head. I am constantly in a state of apprehension. I am constantly on the verge of tears. I didn't realize how much I needed to be cared for. and how important it is going to be for me to figure out some ways to take care of myself - to create safe places where I can let my guard down. 

The physical exhaustion I've felt since getting the first SA results should have been a clue as to how much energy I am exerting to hold it together. Being at home with my husband is easiest. Being at work is okay if I can be focused on a specific task. I told my boss and direct co-worker that we had “some medical stuff going on... I felt like a zombie... I didn't want to talk about it.” They've been pretty respectful, but I know that they could ask about it at any time, and I hate that. With my irratinal emotional breakdowns and random days off for doctor appointments, I had to let them know that sometime was up and that it had nothing to do with them. Being around my one friend and two family member who know is okay. They want to be supportive, but I know that they can't understand. At least with them I know that I don't have to lie or pretend that everything is okay. Being around  friends and family who don't know is exhausting. I swear that talk of getting pregnant or babies comes up in every conversation. When we were trying, I had no problem lying and telling people that we were going to wait until I got better insurance, or until my husband got a better job, or that we just weren't ready yet. We'd wanted our trying to be private between us, as it is in fact among the most intimate and private activities that a couple ever engages in. Apparently I was so good at these fibs, when I recently told my best friend that we were having some problems, she was shocked. Ironically she was happy that her 22-week pre-nate wouldn't have to wait another 5 years for a friend, while I was considering for the first time in my life that I might never have a family. For whatever reason, when the topic comes up now I feel completely exposed and raw. and unequipped to participate in the discussion.  It takes everything I have to hold myself together so as not to let on that I want to run and hide and disappear.  We are married couples in our early 30's, so it really isn't an inappropriate subject. It's just that everything about it all of a sudden, to me, feels so invasive and out of control and, inappropriate.  I now brace myself for this part of the conversation everytime we hang out with friends. And it takes ….so.... much …. energy. 

Someone said that the first days and weeks after getting a zero SA are the worst, but it does get better. Thank you for that wisdom and encouragement. I think that I cried more in those first two weeks than I have in the past five years. For some reason driving was especially hard. Maybe the car is a private,  space where I was safe to let my guard down. I drive to meetings everyday at work, and I must have cried almost everytime I got in the car. Crying is exhausting work. I may have been physically present at these meetings, but I assure you that I was not mentally present. I was exhausted. And I couldn't eat. I've always had a hard time eating when I am under stress. It is so hard to swallow. To swallow the food, and to swallow the truth and reality of everything else that is hitting me. Besides, my stomach was in knots. Food really was not appealing. Breathing was hard too. It was as if I had to remember to breath. And as if the sobbing had hurt my diaphram, causing it to seize up everytime I exhaled. As I write this I realize that this has passed and that I can breath normally again. Reminds me of the saying, this too shall pass. 

This week has been much better. I had a full day without tears. I worked past 5 a few nights and didn't feel as thought I would pass out from exhaustion driving home. Looking back I think it started last Sunday at breakfast where I was able to eat a full meal. It is crazy to me how severely the stress of this diagnosis has physically affected me. It is unreal. 

Whale Breath

As a follow-up to that awesome training I did two weeks ago I had a meeting planned yesterday to meet with a few of the other participants. You know how there are people who you feel so lucky to have crossed paths with - I feel so grateful to get to work with these two individuals. They are social scientists who have the most brilliant way of understanding group dynamics, group process, and how to actually get things done. We all work on a community collaborative as representative of our various organizations. They are a bit older and more experienced than I and really awesome mentors.

So yesterday morning I get an email asking if we could meet on a whale watching boat instead of at the office! Umm, Heck yeah! I was even able to bring my two girl cousins who are visiting for the weekend. So we bundled up and loaded up on the boat. As we headed out into the Pacific Ocean, the social scientists and I had the most productive discussion about how to proceed with our work. Before too long we were awed by the spouts of humpback whales. Pretty awesome to see these huge creatures breathing just above the water line.

My sweet cousins have never before been on a boat and were as impressed as two teenage delinquents could be expected to be.

Then we got lucky, the captain spotted a blue whale. We motored along to get closer and were overcome by the nastiest smell. Apparently Whale Breath is really gross smelling! We were in the vicinity of the largest animal in existence. And then it spouted - 30 ft into the air! Just as awesome was seeing it dive back down into the sea. I found this video on YouTube - not from our trip, but just as amazing. The span of their tail can be 25 feet wide!

At the training I had a fun conversation with the lady social scientist about wanting to tour all of the local outdoor fire-pits and write up reviews for them to post on a blog. The local Spa's too. I figure it would be a great excuse to explore my community a bit more and encourage me to keep writing.  So as we were boarding the boat, we started talking about social networking and the blurring line between privacy and self censorship. They were saying that they are selective about what they say in their social networks, because of the public nature of their work, yet we agreed that writing was a powerful process of self-reflection that allowed us to see problems and ourselves in a different light.

I don't know what I was thinking, but I confessed. I confessed to these friends that I had a secret blog, one that no one knew about, one where I didn't have to self-censor. I don't know why I told them, other than that it was an itty bitty teeny weeny step towards being more open about this whole experience.

Along the lines of being more open, and little bits of advocacy, I was at a healthcare forum last week with our Federal and State elected representatives. They were taking questions from the audience on little notecards. The question I submitted was about infertility mandates on health insurance, as a way to reduce the rates of multiples who require expensive NICU stays. At one point after I turned in my card I had the urge to run to the podium, interrupt the dialogue, and take back my card. I suddenly didn't feel strong enough to listen to then answer the question. A few deep breaths and I got my composure together. They ran out of time and never got to my question, but I am sure that the Reps at least read the remaining pile of questions and saw mine. Maybe it planted a little seed in their minds.

My awesome boss submitted the letter I prepared asking my employer to switch to an insurance plan that covered infertility services. She was gone last week, but we received a memo that the insurance rates will be increasing. Isn't that normally the same time that the whole insurance package is reviewed and the opportunity to make changes? I took the liberty of calling HR to follow up on her letter and ask them if now was the time to consider changes. I was informed that they were researching and preparing a response to my boss's letter. God, it would be so freakin awesome if I could get my employer to make a change like that! I would feel like superwoman!

Before I sign-off I want to send the biggest congratulations and lots of love to Julie and Jeff who are PREGNANT!!! 

Cards at Target

Okay, so I am going out on a limb here. My Lover is one of only two people IRL who know that I have this blog, and the only one who has the web address to read it. I wanted him to know that I was writing about our private story in this public yet anonymous space, and I wanted him to be able to read what I had to say, if and when he wants. 

So anyways, he might be reading, I don’t know. Babe - this post is about something that I am planning for you, so be warned that you might spoil the (little) surprise if you keep reading. 

I was at Target this morning, picking up ink so that we could finnish printing our Cade Foundation grant. I walked in, through all of the kids clothes noticing how cute all the little outfits are, but thinking that even if I had kids, I wouldn’t be spending tons of money on new clothes (since we’ll have all those hand me down, but also because we are pretty frugal.) I walked through the baby isle, those things get me every time, but then I thought about how fast babies grow and decided to put on a pretty pair of IF glasses and think that it was kind of nice that I get so much time to admire these sweet baby clothes without being sad that my baby is all grown up. 

I found the printer ink and headed back to check out, and walked past the cards isle. I love cards and always stop to look at the cards isle. The whole row was Fathers Day Cards. I sighed. I found a card for my dad. It was perfect and talked about what a great dad he was for me growing up and how much I still love him. I may have my issues with my dad, but I do love him, and nothing can change the fact that he was a great father while I was growing up. 

Then I saw these cards “to my husband on fathers day.” I have never seen a card like that before. I was stopped in my tracks. I pulled one of the cards up to get a closer look. I can’t remember exactly what it said, but I was hooked. I looked at every single one. 

and then I bought one. 

For My Lover.

I do love him, so much, especially on Fathers Day, because he is the only person I could ever want to experience parenthood with, because he has been so wonderful dealing with this IF journey, because he is willing to undergo examinations, and procedures, and injections so that we can become parents together, because he is patient and kind and loving and will be a most wonderful father someday.

I am going to have to edit the text of the card a little bit, since he is not a father, yet. But I am going to give it to him on Father’s Day, in celebration of our journey, and anticipation of the wonderful father that he will someday be.  

So I guess the limb I am going out on is that i feel a little like maybe this might not be an appropriate thing to do. Maybe he doesn’t want to be reminded that it is fathers day. Maybe this, Maybe that...  

As I am writing this, I am catching myself trying to guess what he might or might not want.  I was going to ask for your thoughts and ideas about how to deal with Fathers Day, and these “to my Husband on Fathers Day” cards. 

The reality is that I want this, I want to give him this card, I want him to know that I am thinking about him on this day and loving him with my whole heart. 

Sweet, its settled. and I feel great knowing that someday, My Lover will be a wonderful father. 

This year I am Stronger

I found the Cade Foundation in one of my many infertility web searches last year. Every year they offer a few family building grants of up to $10,000 to help couples build their family thru infertility treatment or adoption. The thought of ‘coming out’ and applying was too much for me to handle at the time. But this year is different. This year I am stronger.

Maybe I started feeling stronger when I came across Lily’s infertility e-class last November. (Lily authors  The Infertile Mind) I wanted to sign up, but holiday funds were tight and I wasn’t going to be near the computer enough, and, well, I had lots of excuses. It was okay though because just wasn’t quite ready.

Then Lily offered her class again in March. She titled it March Together and I loved it. I realized that I have so much to say. I realized that I needed my voice. I realized that I needed people who understood me. Every couple of days she posted a little assignment, a little question or task that helped me get my arms around this mob of thoughts that had taken over my brain,
and my life.
She broke it down into bite size pieces, so that I could start finding the right words.

I was actually scared at the start of the class to share anything. Lily made it a password protected blog and assured me that it was safe.
That I was safe.
And that what I needed to say could be said. Thank you for that Lily.
So I started writing, and writing, and writing. And ohhhhh, does it feel good. And things that I couldn’t say found their way to the computer screen, because I guess talking and writing are different somehow. And little by little, it is easier to talk about the stuff that I write about. I tested out the words in writing and if they felt okay, I tried them on verbally. Amazing how that process works.

So, Lily’s e-class was wonderful. And the March Together class was free! Instead of charging for it, she asked that we make a donation to the Cade Foundation. So I found myself back on the Cade Foundation website. They had just announced their 2010 grant cycle, and can you believe it, I applied. It was actually just a form that sad I intended to apply, but I did it. And I talked to my husband about it.
“coming out” on the application with my real name!
“talking” about the possibly of being public with our journey!

Big steps for me!

So I spent a good portion of the weekend (while I wasn't consumed reading My Bumpy Journey's entire, yes entire blog!) working on the full application that is due June 15th. I participated in the Q and A conference call this morning. I picked out a PICTURE, yep a real one!, that we will submit with our application.

I suppose I could go on and on about all of the things I thought about as I completed the application. The fact of the matter is that I am stronger and I can do this and we WILL have our someday family.

A final note of gratitude before I go.
Lily is one of those souls who touched mine. I will always remember the kindness that you showed me in our email exchange and the warmth that you exuded in welcoming me to let go and write and share. Your e-class is amazing and I hope that you keep doing it. I hope that you turn the assignments into a workbook so that I can buy it and give it to my therapist (especially the ones I don’t see anymore!). I want you to know that you opened doors for me and that I am thriving. I can’t thank you enough.