Expecting a baby after years of struggle

Since 2009, Jen has gone through four miscarriages, an ectopic pregnancy, multiple rounds of fertility treatments, the loss of a fallopian tube, and her husband underwent urological surgery. Now, after seven years, Jen is happy to be 8 months pregnant with a baby girl, Emersyn. We spoke a few weeks ago about what it’s like to be on the other side of infertility after years of struggles.

Photo credit: http://ashleykemper.smugmug.com

Caitlin: So last fall you find out that you are pregnant, for the 6th time. At that point, are you cautiously happy?

Jen: Every time.

Caitlin: You feel happy and excited every time?

Jen: Yes, like you’ve said, I’m cautiously happy. I think, maybe this is the time. Maybe this is going to be it. But of course in the back of your mind, there’s always that constant paranoia. I worry I’m going to go to the bathroom and I’ll be bleeding. That’s the mindset. It took me a long time to feel relaxed with this pregnancy. When we found out it was a girl, I was like okay. Maybe I can relax.

Caitlin: Those milestones make you feel like, okay, maybe this really is going to happen?

Jen: Every ultrasound is huge. We had one at four weeks, we had one at six weeks. Then another at eight and then another nine, fifteen, and eighteen weeks. It’s wonderful to see her on that screen. She’s healthy and she is okay but at the back of my mind, I’m wonder, when is the other shoe going to drop or something bad going to happen?

Caitlin: Do you feel scared, even now?

Jen: Yes.

Caitlin: I think that every pregnant women does, to be honest. I didn’t have any trouble getting pregnant, but it was the same sort of thing for me. Every ultrasound it felt a little more real. I was like okay, this is happening. You’ve gone through so much, so I imagine why that anxiety would be just multiplied for you.

Jen: What a lot of people don’t realize is, 65% of first pregnancies end up in miscarriage. (With our first pregnancy) I said okay, maybe we were a part of that 65% and everything after will be fine. Maybe it was just a fluke, and then it kept happening. At some point you realize, something is not right. It was hard to want to try again. It was hard when we found out that we were pregnant this time.

I kind of had a feeling, we had ran half of a marathon over the weekend. Something just felt off. And my husband said, maybe you are pregnant. I took the tests and it was instantenous. It was one of those, okay how is this one going to go?

Caitlin: You’ve always been open about your struggles to have a baby. You share your story on Facebook and on your blog, kyleandjensmith.blogspot.com. Why did you make that decision and how did that work for you?

Jen: Well, we didn’t talk about it the first time that it had happened. That was really hard. Only our family knew. So, since then, I’ve tried to tell people what we were going through. I couldn’t imagine going through everything that we’ve been gone through and not talking about it. I think it makes it worse.

My husband said if you’re comfortable with sharing, I’m on board. I think when you haven’t been in the position that we’ve been in, it’s kind of hard to understand why we are so open. It’s a comfort thing. It’s something that happened. I don’t have to walk around with a smile on my face because people know what’s going on and and they understand. It just made it easier knowing that people did know.

I also think, it’s an educational thing. I don’t think people understand how common this is. They don’t realize, one in eight couples deal with infertility and pregnancy loss on a very recurrent basis.

We’re trying to help others that are going through the same thing and dealing with it. Not knowing where to go, what to do. What programs are available to help them? That’s helped me. If I  can help someone else by sharing our story, then I’m perfectly okay with that.

Caitlin:  For people maybe who have friends or family who are dealing with infertility. What do you think is important for them to know? For them to be the best support for their family member ?

Jen: Just be good at listening. If someone in your life is dealing with infertility, just listen. Let them cry, let them get their feelings out. For me, that was huge. I called my sister and she let me go off on a rant if I was having a bad day about it. The little things can make all the difference for someone who is going through it.

I think some of the hardest things for me was one of the family members or friends getting pregnant, and they were afraid to tell me. Don’t be afraid just tell me. It made things so much harder, if you apologize a million times.

Caitlin: I feel like that puts you into a really awkward position. You shouldn’t have to be reassuring the pregnant person.

Jen: My sister got pregnant when I just had had a miscarriage. She texted me, tell me to call her. I called her and said, “You’re pregnant aren’t you?” She got real quiet and she said yes. She began to apologize.

Being pregnant is not something you should apologize for. Just because someone else has problems doesn’t mean that we don’t have the ability to be happy for somebody else. People need to understand that. We don’t lose feelings for everyone who is able to have kids.

Caitlin: Now you are on the other side. You are one of the lucky ones to be able to pregnant. What has it been like for you switching roles here?

Jen: It’s very surreal. I wake up every day, I’m like okay, this is happening. I will say, though, it doesn’t take away all the pain I’ve been through. We have five babies that are not here. That kills me every single day. To wonder what could have been. I still think about those other ones. We are very lucky, but she doesn’t replace the ones we lost.

I want to be an advocate for those who are struggling. Yes, I am on the other side but at the same time, it doesn’t negate everything that has got us to this point. We’ll never forget that.

Caitlin: That’s a part of who you are know, I imagine.

Jen: It is, very much.

Caitlin: What are you most looking forward to now?

Jen: Everything. The next milestone. I have my glucose test coming up and people joke about how hard that is.

Caitlin: Oh, that’s nothing after what you’ve been through!

Jen: Yeah, I’ll sit there, I’ll be fine.

I’m excited about all the little things. Having her, teaching her, and supporting her. It’s the little things that we’ve wanted since we got married almost eight years ago. We are so excited and our families are so excited.

A lot of people didn’t think it was going to happen and I can’t blame them. I didn’t think either. I thought it was just going to be disappointment after disappointment.

Caitlin: What do you think you’ve learned about yourself on this journey?

Jen: I’m a lot stronger than I give myself credit for. With my first miscarriage, I was like, I cannot do this again. I can’t keep going, I can’t go through that again. I realized just how determined I was to make this happen.

I’m tough, I’m strong, and I can push through for myself and Kyle. It made us grateful. I wouldn’t change anything.

Image courtesy Jen Smith

Photo credit: http://ashleykemper.smugmug.com

Let love take over: Lessons from hospice

I recently came across a post on Facebook from an old family friend that brought tears to my eyes. Christopher (pictured below) is a hospice volunteer. He agreed to talk a bit about work I find both fascinating and inspiring. He also shares that wonderful story I mentioned, below.

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Caitlin: What drew you to volunteering with hospice?

Christopher: I have always had an interest and curiosity about the experience of death and what comes after death. I had several experiences as a teenager with death, one in particular in which I was the only person on the scene of a late night car accident and stayed with a passenger as he died. Those experiences had a deep impact that I never forgot about. In college I took a course on Death & Dying. Elizabeth Kubler-Ross’ ground breaking theories on the five stages of grief were relatively new at the time, as well as the academic study of death. Looking back, I am honored to have obtained that knowledge thirty years ago.

It wasn’t until three years ago that I began to think about doing some volunteer work. My children are grown now and after spending years involved in various sports and school related programs, that phase of life had ended.

I was working for Abington Hospital at the time and knew they had a Hospice facility. I felt drawn to it. I walked in one day and discovered that they had an immediate need for someone at the exact time of day that I was available to volunteer.

Caitlin: Wow, it sounds like it was meant to be. What’s a typical day like for you volunteering at hospice?

Christopher: I cook breakfast two morning each week. We have a 20 bed inpatient facility with a lovely small kitchen where volunteers make meals to order for the patients who are eating. We have patients who may only spend their last couple of days with us, but we also have some who spend several months. Many of them are quite self sufficient when they come in and still have hearty appetites. So I might be cooking something as simple as Cream of Wheat or Toast & Tea, or a more elaborate breakfast like an Omelette or fresh Blueberry Pancakes.

I can honestly say there is almost no such thing as a “typical” day.  I could show up one day and no one is eating, but the next time I might feel like an over-stressed cook at a busy diner. Either way, there is always an opportunity to connect with a patient or family member. Family members can spend the night in the rooms with patients, and quite often they will ask for breakfast as well. Preparing a meal, serving food, and perhaps feeding someone is one of the most elemental forms of caregiving. A very intimate experience.

Caitlin: What is the hardest part of volunteering at a hospice?

Christopher: The hardest thing to accept is the younger patients.  When a patient is in their 80’s or 90’s death can be accepted or expected for the most part. That person has lived a full life. We seem to have so many women in their 30’s and 40’s dying of breast or ovarian cancer. Women who have young children and husbands coming in to say goodbye. It is heartbreaking.  We also have a Pediatric wing. It is not common for children to enter inpatient hospice. Most remain in the hospital or spend their final days at home. But we do have children and teenagers from time to time. It is very difficult and tough on even the most seasoned nurses.  At the same time it can be a beautiful experience. We once had a 10 day old baby. Very unusual circumstances meant that the parents could only visit for a couple hours each week. The baby had a congenital heart defect and was slowly but painlessly dying. The nurses and volunteers made a pact that this child would never be out of the arms of someone. There was a continuous stream of loving people who took turns holding the baby and rocking her. She was with us for two weeks and no one will ever forget her.

Caitlin: That’s so beautiful. I’m curious for you, what is the most rewarding part of volunteering with the dying? What keeps you coming back?

Christopher: There is ALWAYS something to learn or receive from my time at hospice if I stay open and receptive. It may come from a patient, or family member, or often from watching experienced nurses. Even the most difficult patients or family members can be learning lessons.  There is a saying “We die as we lived.” This is so true. There are people who are so grateful and giving even while experiencing great suffering or pain. You just know that they lived like this their entire lives. There are people who are the exact opposite. Nothing can make them happy. I’ve learned to accept both types of people as teachers.

Caitlin: How do you keep yourself emotionally intact doing what could be very draining volunteer work?

Christopher: Honestly, the challenge is staying emotionally present. Resisting the temptation to close off.  It can be easy to view death as routine when you are around it so often.  Every patient and family member is facing a unique situation in their lives, and that is easy to forget when there is a constant cycle of families coming and going.

Before I experienced a hospice setting I guess I imagined it to be an incredibly and overwhelmingly sad environment. That isn’t true at all and it didn’t take long to figure out why. There is continuous grief, but at the same time there is continuous Love (Earthly and Heavenly).  I have often described this as the “Beautiful Sadness.”

I have also worked with ways to help staff and volunteers stay mindful and present.  Last year I took a course that was based on  “The Tibetan Book of Living and Dying” by Sogyal Rinpoche. (You can check out a video about the course here.)

Based on the course, I set up a meditation and mindfulness program and have presented it to fellow volunteers. I’ll be continuing the program this fall and we hope to expand it. The goal is to provide a pathway to enhance end of life caregiving skills by reducing fear, increasing compassion, and embracing the emotional roller coaster.

Caitlin: You shared a story on Facebook recently about comforting a family while their loved one was passing away. Can you share that story?

Christopher: Sure. An 80 year old man, dying of liver failure, was surrounded by his family. His wife of 58 years at his side, two daughters and three grand daughters stood around the bed as well. Tears were streaming down all faces. He shook my hand with the strongest grip I have ever felt from a hospice patient. The only words that came to my mind to say to him were, “You are surrounded by love. Nothing else matters right now.”

That family will stay in my heart and that is the greatest gift of hospice care, and why there is absolute truth in the old saying “You get way more than you give” as a hospice volunteer.

The more I think about this, and the words “Surrounded by love”… is the realization that he is not just surrounded by the three generations in the room. He is surrounded by an unending generational chain. All of his ancestors who have passed before him, and all of his descendants yet to be born. It is all part of the same LOVE, unbroken and inseparable. It is with us always.

Caitlin: I think that is so powerful. I am personally really uneasy about death, but those words really made sense to me and I think they’re so true. It certainly brings peace to me and I hope it will for my readers, as well. If I may bring up, I know you recently lost your mother. How has this volunteer work impacted that loss and perhaps helped you deal with it or understand it?

Christopher: I don’t think it lessened the pain or loss at all, but it certainly helped to understand the process of a prolonged terminal illness like she had. I was better equipped and capable of talking to her about death than I would have been without the experience of hospice work. Even more so, was the ability to help family members work through the pain.

Caitlin: What advice would you give other people as they care for family members who are in their final stage of life?

Christopher: Stay focused on the moment, enjoy the smallest and seemingly most insignificant moments. Be sure to take care of yourself as well as the person who is dying.  There is a tremendous amount of internal stress going on that people are often not even consciously aware of. Eat, sleep (or at least get rest), and take time for yourself on a regular basis. Without this you can not give your best to your loved one over the long run. Above all, put aside petty differences or difficulties with family members.  There is no time for this at all. Let love take over.

Caitlin: Let love take over. That’s really great advice for all situations, actually. Obviously, this kind of volunteer works seems like it could be very emotionally difficult. Is it hard for hospice to find volunteers?Why should someone consider volunteering with a hospice?

Christopher: It can be; both difficult to do and to find volunteers.  I think that the people who volunteer for hospice as well as the people who make a career of working with the dying will mostly tell you that it is a calling.  Maybe some people try it and then discover that it is too much to handle. There can be a lot of emotional burnout as well.  This can happen in any field though.  There are many ways to volunteer for hospice without having to be in direct contact with patients. We have a fantastic group of people who make quilts and crochet blankets for every patient.  (I have my mother’s quilt that was on her bed during hospice care)

We have people who are trained to do follow up grief counseling with family members. And we have people who volunteer time doing clerical work or fundraising. These are all vital components of the whole hospice network. I would say that if someone feels called to do this type of work, they should listen to the calling and contact a local hospice. They will always be welcome to come in and discuss the possibilities.

Thank you so much for sharing your story, Christopher. I think it takes a truly special person to do the work you’re doing and it makes me happy to know there are people like you caring for those in the last days of their lives.

If you’re interested in volunteering at Abington Hospice at Warminster (in Pennsylvania, where Christopher volunteers) you can call Volunteer Coordinator Nancy Leporace at 215-441-6831.

Image credit: Christopher

 

Finding peace after loss

My friend Johanna lost her dad very suddenly when she was 26 years old. Through tears (for both of us), she talked about what she’s learned through six years of missing her dad and shared advice for others dealing with loss.

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Caitlin: It’s been six years since your dad passed away. Has dealing with that loss gotten any easier for you as time has gone by?

Johanna: Yes. I mean, it definitely has. When I think back to how hard it was in the first week, couple months, even the first couple of year, it was so unbelievably hard. But within six years, it’s definitely gotten easier.

This is something I’ll never get over. There are times when I suddenly get upset still and you know, holidays are still hard because I do miss him terribly, but I don’t feel that raw, raw pain that I felt six, five, four years ago. It’s steadily gotten much better.

Your mom said something to me that at the time, it was heard to hear, but now makes so much sense.

Caitlin: She lost her dad really young.

Johanna: Yeah she told me, “You’re now part of a club that no one wants to be a member of,” which is so true. And you know, I’ve had quite a few friends lose a parent and I feel like I’ve been there for them and have been able to understand on a much deeper level and I think thats been helpful for them to have someone who gets it.

Your mom also said to me that you now have to find your new normal. At the time I didn’t want to hear that. I didn’t want to have to find my new normal, I wanted my old normal. I wanted my dad in my life. But, it is true because you do kind of get used to a new way of doing things and living your life without that person. It takes a while, but you do find it.

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Caitlin: You touched on this a bit before, but I do wonder if people realize that when you lose someone, even when a lot of time has gone by, there are still times when the pain feel just as raw and sharp as it did when it happened.

Johanna: Yeah, you know, I’m not bursting into tears all the time and having those kind of episodes that I had before so it is kind of something that people tend to forget. Maybe its something they just don’t want to bring up, because it is such a tough subject to talk about.

Everyone is always looking for the right thing to say to make you feel better, but its not about making you feel better, it’s just about being there.

Caitlin: I think when our friends go through something difficult, we all want to be there for them as much as we can, but it’s often hard to know what to do or say. I’m sure it’s different for everyone, but what do you think is the best way to be there for a friend who is going through something like what you went through.

Johanna: I think it’s just being there. Everyone is going to handle it differently and need their own thing. I wanted people to be around me at all times. I didn’t want to be alone. There is nothing anyone could have said that was going to make it better or change it, but I think just allowing me to talk about it made me feel better.

But it depends on the person. Other people don’t want talk about it at all. They just want to be left alone and that’s how they have to deal with it. And I think it’s just a matter of realizing the type of person (your friend is) and what they actually need. For some people, less is more.

Caitlin: What advice would you give someone who is going through a loss that’s been really difficult?

Johanna: I don’t try to say it’s going to be okay, because it’s not. You will be eventually (be okay), but it’s still going to hurt quite a bit.

Just hang in there, because it will get better. And with time it does actually feel a lot better and the pain just does ease up a little bit and it doesn’t hurt as much.

I just remember sitting there thinking that I felt like my world has stopped and everything around me is still spinning and how is this possible? But, you kind of fall back into that groove and you get back spinning too, and you find that new normal. You can find peace and move on with your life.

Thank you so much to Johanna for talking about such a tough subject with such grace and wisdom. What advice would you give a friend who is dealing with the loss of a loved one? Or, if you’ve experience a loss like Johanna, what did your friends and family do for you that helped?