This past winter/spring was a hard one for our family health wise. Most of you know, my husband Elias has Cystic Fibrosis. CF is a progressive, genetic lung disease and as we are learning, things can change very quickly.
As we've been adjusting to what we consider to be our new normal, we've also been grieving the things that we can no longer do as a family and what he can no longer do as an individual. However, tonight we were talking about all that we are thankful for and all that we have done.
We are so thankful that God called us to live in West Africa when he did. Six years ago we were living in The Gambia with no concerns about hospitalizations and IV antibiotics. We mainly had to focus on getting Elias' meds to him via visitors and making sure his meds stayed cold during times of unreliable electricity. This was an amazing time for us as a couple, relying on God and each other. Spending basically every waking hour together without the stress of jobs, finances or health insurance. This is the time when our infertility journey began to get a little bit more difficult emotionally, but overall it was a really rich time for us. As much as I have dreamed about the possibility of going back longer term, at this point, that is no longer an option for us as a family. I am so thankful that it was at one time.
Three years ago we chose to put plane tickets on a credit card and go to the Grand Canyon with my parents and my sister and brother-in-law. We were able to walk quite a bit and hike part of the way into the canyon. I wasn't sure if we should go. I wasn't sure if we should spend the money and we had also began the adoption process and we knew that calls for babies can come at any time. We chose to go and I am so thankful that we did. We just paid off the debt this past year from those tickets, but I don't have a single regret. The following summer the boys had joined our family and now Elias would no longer be able to do the hike we did. I am so thankful for that experience and those memories.
It took us 5 1/5 years to become parents. Most of those years I hated our infertility. It was another thing that CF robbed us of (98% of men with CF are infertile). But, I also tried to remember that we might not have the retirement years that so many couples get to travel and to have their time as a couple. I can now look back and be thankful for those years. Those years that allowed us the travel opportunities I listed above. Those years that we had just us to connect as a couple without the demands of children on our time. They weren't easy years, but they were our years.
We don't know what the future holds. A cure might be right around the corner. Or a clinical trial may stop the progression of his disease. He may be stable for a number of years or he may end up needing a double lung transplant. CF is unpredictable and I'm growing to dislike this disease more and more. Despite all of that, I will be forever thankful for the time we have had and the memories we have had the opportunity to make. We are thinking about traveling again, sooner than later, to make more memories before things change again. It may take us another 2-3 years to pay it off, but I know that we will have no regrets, we will only be thankful.
Saturday, August 6, 2016
Sunday, July 31, 2016
Saying yes doesn't mean that it will be easy.
This is a post I've wanted to write for some time. I was recently talking to an amazing mom that also is a foster mom. We were talking about some of the struggles of foster care and adoption and how hard it is to be honest with people about the hard times because of the judgement that we either face as parents who "chose" this path or the fear judgement that we may or may not meet.
As a new mom to twins. One who was a difficult newborn between gastrointestinal issues and reflux and the other having special needs, things were challenging. Elias was also finishing up the semester at school so I had to go back to work early. It was really, really hard. But we also chose this. We knew going into that this would be the case, we knew that it wouldn't be easy, though I don't think you can ever really understand how hard it is until you are in it.
There were many times where I didn't feel like I could really be honest about how hard it was. I didn't want to sound like I was complaining. I was so incredibly grateful for this gift, but choosing this and being grateful didn't magically take away the hard.
I remember in the throws of infertility when people would complain about pregnancy and sleepless nights, being frustrated because I was willing to take on any of that. I can see now that was my pain speaking and people don't have to enjoy every minute pregnancy to be thankful for their child and they don't have to enjoy every minute of the newborn stage that goes so quickly, but can also be really difficult, to be fully in love with their baby.
There was this crazy part of me that thought that because I waited so long to become a mom that the sleepless nights would somehow be easier and that I would have this super human ability to just power through. I had no idea what it was like to be truly tired and I also had no idea what impact sleep deprivation could have on a person from their mood to forgetfulness and beyond. I was wrong. Waiting longer for a child does not make sleeplessness easier. Lack of sleep is lack of sleep. It's hard either way.
Foster parenting goes another step. Foster parents understand going into foster care that things won't always be easy. In fact there might be more hard times than easy times. But that doesn't mean that foster parents aren't allowed to feel emotions. They are allowed to feel overwhelmed, they are allowed to say that it's hard. They need your love and support. They need people who are willing to step in and help or listen without judgement.
We choose this path. In our case, we felt like this was the path God was calling us to walk down and I know many adoptive and foster parents who also feel this way. We chose to say yes to his plan. That doesn't mean that parenting has always been easy and it won't always be easy, but I would do it all over again.
As a new mom to twins. One who was a difficult newborn between gastrointestinal issues and reflux and the other having special needs, things were challenging. Elias was also finishing up the semester at school so I had to go back to work early. It was really, really hard. But we also chose this. We knew going into that this would be the case, we knew that it wouldn't be easy, though I don't think you can ever really understand how hard it is until you are in it.
There were many times where I didn't feel like I could really be honest about how hard it was. I didn't want to sound like I was complaining. I was so incredibly grateful for this gift, but choosing this and being grateful didn't magically take away the hard.
I remember in the throws of infertility when people would complain about pregnancy and sleepless nights, being frustrated because I was willing to take on any of that. I can see now that was my pain speaking and people don't have to enjoy every minute pregnancy to be thankful for their child and they don't have to enjoy every minute of the newborn stage that goes so quickly, but can also be really difficult, to be fully in love with their baby.
There was this crazy part of me that thought that because I waited so long to become a mom that the sleepless nights would somehow be easier and that I would have this super human ability to just power through. I had no idea what it was like to be truly tired and I also had no idea what impact sleep deprivation could have on a person from their mood to forgetfulness and beyond. I was wrong. Waiting longer for a child does not make sleeplessness easier. Lack of sleep is lack of sleep. It's hard either way.
Foster parenting goes another step. Foster parents understand going into foster care that things won't always be easy. In fact there might be more hard times than easy times. But that doesn't mean that foster parents aren't allowed to feel emotions. They are allowed to feel overwhelmed, they are allowed to say that it's hard. They need your love and support. They need people who are willing to step in and help or listen without judgement.
We choose this path. In our case, we felt like this was the path God was calling us to walk down and I know many adoptive and foster parents who also feel this way. We chose to say yes to his plan. That doesn't mean that parenting has always been easy and it won't always be easy, but I would do it all over again.
Thursday, June 23, 2016
7 Years of Infertility
This year we will celebrate 8 years of marriage. It's hard to believe that that also means that we've struggled with infertility for nearly the same amount of time. But things have changed in those years.
I don't really think of us as struggling with infertility right now. Like most couples we talk about when we might be ready for another child, but it feels like we are somewhat in control of that decision and with infertility, everything felt outside of our control.
The reality is though, we are still infertile. We do nothing to prevent pregnancy because we know it won't happen. We've done nothing to prevent pregnancy in over 7 years and in case you were unaware, infertility is considered actively trying to get pregnant for one year. I think we've met that requirement. Don't get me wrong, I am a believer in miracles, but it doesn't actually cross my mind very often anymore, not the way it used to.
On the plus side, we don't have to think about family planning if we aren't ready to add to our family. On the down side, we only have 1-2 more chances with our remaining embryos to have a biological child. Embryo transfers are expensive, adoption is expensive. It's a lot more than just deciding to start trying again and see what happens.
This has become our normal. Someone asked in a natural fertility group that I'm part of how long everyone has been trying to conceive. This is what sparked my thinking. I thought about it and my answer was that we tried for 5.5 years, then our boys joined our family and from that point forward, we haven't been trying because we haven't been pursing fertility treatments, but we are still definitely infertile. It feels like a dividing point where I took on the identity of being infertile, and then I no longer carried that as something that defined me or our family.
It's been freeing.
Monday, June 6, 2016
Finding my tribe
During my recent ProDoula labor training, we learned about personality types using a different system than I have been exposed to before. In learning this, I also learned that I am the type of person that needs to have a network. I want to know that I'm not alone in what I'm going through. In this day in age of social media, that is now far easier. There are Facebook groups for almost everything where you can ask questions and get almost immediate responses from someone who is in the same place you are or from those who have already walked that same road before you.
When we were in the thick of infertility I began blogging for this reason. I needed to put my thoughts and feelings somewhere. I needed to feel like I was educating someone on the pain of infertility because that was the only thing that was in my control. I really was seeking a network and community. Sharing our story welcomed those who were also facing infertility into my network. Through in person relationships, Facebook (FB) friendships and FB groups I found a tribe of women who understood what we were going through.
Then we moved onto adoption. I found a group for those who were going through the adoption process, but were not yet matched. Some were just beginning and others had been waiting for years, but again, I found my tribe.
Then we became adoptive parents and I found a new tribe. Those navigating the waters of open adoption. Some with kids far older than my own and who had been doing this much longer and some who were just beginning. I could ask questions and I've learned more about how to do open adoption well from these groups. Again, I found my tribe.
With our adoption also came twins and Down syndrome. I tried twin groups, but I didn't really feel like I fit with our unique dynamic. I found a group for parents of children with Ds and then I received a message from a the co-founder of an amazing organization that not only had a group for mom's who's little ones were born in 2014 like Asher, but also a group for mom's with a twin or two with Ds. Again, I found my tribe(s).
However, there was one tribe I was lacking, but in a place where my desire for support was growing. That was a tribe for spouses or wives of someone with Cystic Fibrosis. As we've faced new developments with Elias' health the past 6 months, I was starting to feel lonely. I had questions that I didn't want to wait for clinic checkups to ask. There are a lot of amazing groups and resources for people with CF themselves or for parents of children with CF, but I didn't fit into either one of those categories. I wanted to talk to those who knew what it was like to have a spouse with this disease. The changes that come with age with a condition that is progressive. The CF community isn't huge to begin with, but add that to the fact that CF patients can't actually be within 3-6 feet of each other (depending on your source), it can get pretty lonely. Finally, on a particularly difficult week, I asked in a larger group for CF support if there were any groups for me as a wife of a CFer. And there was. I now have a tribe of CF wives. All of our husbands are in different places health wise, but we can offer each other support. We can talk about the hard stuff and we can celebrate the victories. Again, I have found my tribe.
When we were in the thick of infertility I began blogging for this reason. I needed to put my thoughts and feelings somewhere. I needed to feel like I was educating someone on the pain of infertility because that was the only thing that was in my control. I really was seeking a network and community. Sharing our story welcomed those who were also facing infertility into my network. Through in person relationships, Facebook (FB) friendships and FB groups I found a tribe of women who understood what we were going through.
Then we moved onto adoption. I found a group for those who were going through the adoption process, but were not yet matched. Some were just beginning and others had been waiting for years, but again, I found my tribe.
Then we became adoptive parents and I found a new tribe. Those navigating the waters of open adoption. Some with kids far older than my own and who had been doing this much longer and some who were just beginning. I could ask questions and I've learned more about how to do open adoption well from these groups. Again, I found my tribe.
With our adoption also came twins and Down syndrome. I tried twin groups, but I didn't really feel like I fit with our unique dynamic. I found a group for parents of children with Ds and then I received a message from a the co-founder of an amazing organization that not only had a group for mom's who's little ones were born in 2014 like Asher, but also a group for mom's with a twin or two with Ds. Again, I found my tribe(s).
However, there was one tribe I was lacking, but in a place where my desire for support was growing. That was a tribe for spouses or wives of someone with Cystic Fibrosis. As we've faced new developments with Elias' health the past 6 months, I was starting to feel lonely. I had questions that I didn't want to wait for clinic checkups to ask. There are a lot of amazing groups and resources for people with CF themselves or for parents of children with CF, but I didn't fit into either one of those categories. I wanted to talk to those who knew what it was like to have a spouse with this disease. The changes that come with age with a condition that is progressive. The CF community isn't huge to begin with, but add that to the fact that CF patients can't actually be within 3-6 feet of each other (depending on your source), it can get pretty lonely. Finally, on a particularly difficult week, I asked in a larger group for CF support if there were any groups for me as a wife of a CFer. And there was. I now have a tribe of CF wives. All of our husbands are in different places health wise, but we can offer each other support. We can talk about the hard stuff and we can celebrate the victories. Again, I have found my tribe.
Monday, May 30, 2016
What CF Means
I learned shortly after we began dating that Elias had Cystic Fibrosis. Back then, it didn't mean a lot to me. I knew about his treatments and medications, but in many ways it wasn't really real. He was just like any other teenage boy.
Then we got married and CF meant financial struggles. Jobs that only offered part time health insurance. Insurance companies that wouldn't pay for life saving medications, struggling to figure out how to pay or get assistance for his healthcare needs and draining our savings. It meant learning more about his meds, nebulizer treatments and therapy vest. It meant quarterly checkups with his specialist. It meant infertility with the choice of IVF or adoption. It meant that when we decided that we were being called to serve as missionaries in West Africa that we would need a house with the luxuries of electricity and a refrigerator so that we could keep his meds cold and use his nebulizer and therapy vest. Some of these things were really hard and some were just inconveniences.
Now, nearly 8 years into marriage CF means something else. CF is progressive and Elias is getting older. Now 30, he's getting close to the average life expectancy of a person with CF. CF now means PICC lines and IV antibiotics at home, possibly once a year or more for at least two weeks at a time. It means hospitalizations and learning how to advocate for ourselves so that he gets the correct care the first time. It means talks about work from home options and learning more about disability so that we are ready and understand our options when that time comes. It means fear and worry about the future or even just tomorrow. It means that I need to make sure that I can step up and support our family financially if he can't. It means that things can change quickly for good or bad. It means that some years might be better than others and that his health could even improve and he could be healthier and stronger than ever. It means that our wedding vows become more true than ever "for better, for worse, in sickness and in health".
May is Cystic Fibrosis awareness month. If you would like to donate to research toward a cure for CF, you can do so here: https://www.cff.org.
Then we got married and CF meant financial struggles. Jobs that only offered part time health insurance. Insurance companies that wouldn't pay for life saving medications, struggling to figure out how to pay or get assistance for his healthcare needs and draining our savings. It meant learning more about his meds, nebulizer treatments and therapy vest. It meant quarterly checkups with his specialist. It meant infertility with the choice of IVF or adoption. It meant that when we decided that we were being called to serve as missionaries in West Africa that we would need a house with the luxuries of electricity and a refrigerator so that we could keep his meds cold and use his nebulizer and therapy vest. Some of these things were really hard and some were just inconveniences.
Now, nearly 8 years into marriage CF means something else. CF is progressive and Elias is getting older. Now 30, he's getting close to the average life expectancy of a person with CF. CF now means PICC lines and IV antibiotics at home, possibly once a year or more for at least two weeks at a time. It means hospitalizations and learning how to advocate for ourselves so that he gets the correct care the first time. It means talks about work from home options and learning more about disability so that we are ready and understand our options when that time comes. It means fear and worry about the future or even just tomorrow. It means that I need to make sure that I can step up and support our family financially if he can't. It means that things can change quickly for good or bad. It means that some years might be better than others and that his health could even improve and he could be healthier and stronger than ever. It means that our wedding vows become more true than ever "for better, for worse, in sickness and in health".
May is Cystic Fibrosis awareness month. If you would like to donate to research toward a cure for CF, you can do so here: https://www.cff.org.
Thursday, May 26, 2016
A God of Emotions
This past week has been an emotionally charged one. Our family has had to face the what ifs of some health issues that we are facing. I also took a doula training and as doulas we provide a lot of emotional support, which means that in training we talk about emotions.
After the first day of my training, I was driving home from Watertown, thinking and praying about our current situation, my fears, concerns and just my emotions in general and it dawned on me that I am so thankful that I serve a God of emotions. He understands my emotions better than I do and he can handle all of them, good, bad and downright ugly. I'm a pretty emotional person, so to be frank, I wouldn't want a God who couldn't handle them.
I also thought about Jesus and how Jesus not only fully understands emotions from a Godly understanding, but he also completely understands emotions from a fully human perspective. That is seriously incredible. In the Bible we get to read about Jesus experiencing joy, anger and even grief. That is my kind of God. The kind that weeps at a grave with a grieving family even though he knows what is yet to come. The kind that gets angry and flips tables when that anger can be used in a controlled and constructive way and the kind that shares in great joy, even in the simple things.
I haven't always embraced this. I've been angry and bitter with God, shaking my first at him and blaming him for not changing the pain that I was enduring and I'll probably do it again at some point in the future. In those moments I truly felt that God could not possibly understand what I was going through and that if he did, he would change it because it was too cruel not to. I've cried heavy, sobbing tears through a broken heart and just wondered why he would allow this kind of pain. Yet, he understood all of it, even better than I did. He was okay with me being angry and loved me through it and I believe that he hurt even more than I hurt to see me in pain. He did create emotions after all.
I am so thankful that I serve a God of emotions, that can handle whatever I'm feeling and love me through it all.
After the first day of my training, I was driving home from Watertown, thinking and praying about our current situation, my fears, concerns and just my emotions in general and it dawned on me that I am so thankful that I serve a God of emotions. He understands my emotions better than I do and he can handle all of them, good, bad and downright ugly. I'm a pretty emotional person, so to be frank, I wouldn't want a God who couldn't handle them.
I also thought about Jesus and how Jesus not only fully understands emotions from a Godly understanding, but he also completely understands emotions from a fully human perspective. That is seriously incredible. In the Bible we get to read about Jesus experiencing joy, anger and even grief. That is my kind of God. The kind that weeps at a grave with a grieving family even though he knows what is yet to come. The kind that gets angry and flips tables when that anger can be used in a controlled and constructive way and the kind that shares in great joy, even in the simple things.
I haven't always embraced this. I've been angry and bitter with God, shaking my first at him and blaming him for not changing the pain that I was enduring and I'll probably do it again at some point in the future. In those moments I truly felt that God could not possibly understand what I was going through and that if he did, he would change it because it was too cruel not to. I've cried heavy, sobbing tears through a broken heart and just wondered why he would allow this kind of pain. Yet, he understood all of it, even better than I did. He was okay with me being angry and loved me through it and I believe that he hurt even more than I hurt to see me in pain. He did create emotions after all.
I am so thankful that I serve a God of emotions, that can handle whatever I'm feeling and love me through it all.
Tuesday, April 12, 2016
Sometimes open adoption is hardest for those on the outside.
I oftentimes get asked about our open adoption relationship frequently hear responses such as "I don't know how you do it" or "I couldn't do what you do" in terms of sharing our boys with their birth family. For people not living an open adoption it can look confusing and hard to wrap your head around. Even within our own families (adoptive families and birth families in general) there are times where we have to answer questions and in some cases, family members never come around. I'm not great at speaking in the moment and conveying what I really want to say. Writing comes far more naturally for me and there have been so many times when I think back and wish I would have said this or that. Now, two years in I've learned a few things that I'm going to put in writing here.
Open adoption doesn't start out feeling natural. Rarely does any relationship. There is nothing natural about a mother choosing another family to parent her child and then kissing them goodbye with tears streaming down her face as they go home with their new family. It doesn't feel natural to go against your instincts to keep your baby all to yourself or to feel as though you are "stealing" a baby away from his/her birth family and all they have ever known to give them more, when you know their birth family is perfectly capable of raising them and giving them a good life.
Katy and I have always felt a natural connection, but that doesn't mean that an open adoption relationship always feels natural. In the early months, I had to work more at my emotions. I was still insecure in my role as mom. I wanted the boys to know me and need me as mom and I also probably felt like more like a babysitter than their mom for awhile. All of the pain that I had felt leading up to becoming a mom led me to hold on tight, sometimes too tight. Sharing them was sometimes hard because I knew that she loved them just as much as I did and I also knew that she was still familiar to them and in some ways that felt threatening because of my own insecurities. Were they more comfortable with her, did they love her more? Even though Katy has told me so many times that she loves seeing me be their mom, I know this journey hasn't been without pain for her either.
As the months have progressed, I've been able to hold on a little less tightly. I'm secure in my role as mom and their love and need for me. I'm also secure in her role as their other mom and her love for them and their love for her no longer feels threatening.
Some of the questions I get are along the lines of isn't it confusing for the children? Asher and Lucas are only (almost) 2, so they don't fully get it yet, but kids are raised in all different types of families. They come from families with step parents and two households, parents of the same gender, and some are raised by grandparents. Any of these situations could be classified as confusing and sometimes there are tough emotions to process, but for my boys, this will be their normal. The adults are usually who make it confusing and complicated.
Another question is basically why we would choose open adoption. I think many feel this is for the sake of the birthfamily. First of all, I think there are many benefits for the birth family and I would never want Katy to wonder what they look like, if they are healthy and how they are doing. I can only imagine the torment that would cause a mother. But, if we put all of the adults aside, ourselves and their birthparents, we do this for the boys. Too many adult adoptees have grown up wondering why they were placed, where they came from, who they look like, or what their medical history holds. Just recently select states have started unsealing adoption records, but in most states adult adoptees still don't even have access to their original birth certificate. I repeat, it's their birth certificate and they are not allowed to see it or access it. They are not able to find their biological family and have questions answered, they don't know if they have siblings, aunts, uncles, grandparents, etc. They can't complete health histories because they don't know anything beyond their own personal history. Our boys are ours and our family is theirs', but they do have another family. A biological family complete with siblings, aunts, uncles and grandparents that love them and that they have to right to know.
So all in all, we do open adoption for our children. We do it because placing a child for adoption and signing over your parental rights to another family doesn't mean you also sign over your right to love and know your child is safe and healthy and well adjusted. It's not always easy and it's not always natural, but I truly feel it's what's best for all parties involved.
Open adoption doesn't start out feeling natural. Rarely does any relationship. There is nothing natural about a mother choosing another family to parent her child and then kissing them goodbye with tears streaming down her face as they go home with their new family. It doesn't feel natural to go against your instincts to keep your baby all to yourself or to feel as though you are "stealing" a baby away from his/her birth family and all they have ever known to give them more, when you know their birth family is perfectly capable of raising them and giving them a good life.
Katy and I have always felt a natural connection, but that doesn't mean that an open adoption relationship always feels natural. In the early months, I had to work more at my emotions. I was still insecure in my role as mom. I wanted the boys to know me and need me as mom and I also probably felt like more like a babysitter than their mom for awhile. All of the pain that I had felt leading up to becoming a mom led me to hold on tight, sometimes too tight. Sharing them was sometimes hard because I knew that she loved them just as much as I did and I also knew that she was still familiar to them and in some ways that felt threatening because of my own insecurities. Were they more comfortable with her, did they love her more? Even though Katy has told me so many times that she loves seeing me be their mom, I know this journey hasn't been without pain for her either.
As the months have progressed, I've been able to hold on a little less tightly. I'm secure in my role as mom and their love and need for me. I'm also secure in her role as their other mom and her love for them and their love for her no longer feels threatening.
Some of the questions I get are along the lines of isn't it confusing for the children? Asher and Lucas are only (almost) 2, so they don't fully get it yet, but kids are raised in all different types of families. They come from families with step parents and two households, parents of the same gender, and some are raised by grandparents. Any of these situations could be classified as confusing and sometimes there are tough emotions to process, but for my boys, this will be their normal. The adults are usually who make it confusing and complicated.
Another question is basically why we would choose open adoption. I think many feel this is for the sake of the birthfamily. First of all, I think there are many benefits for the birth family and I would never want Katy to wonder what they look like, if they are healthy and how they are doing. I can only imagine the torment that would cause a mother. But, if we put all of the adults aside, ourselves and their birthparents, we do this for the boys. Too many adult adoptees have grown up wondering why they were placed, where they came from, who they look like, or what their medical history holds. Just recently select states have started unsealing adoption records, but in most states adult adoptees still don't even have access to their original birth certificate. I repeat, it's their birth certificate and they are not allowed to see it or access it. They are not able to find their biological family and have questions answered, they don't know if they have siblings, aunts, uncles, grandparents, etc. They can't complete health histories because they don't know anything beyond their own personal history. Our boys are ours and our family is theirs', but they do have another family. A biological family complete with siblings, aunts, uncles and grandparents that love them and that they have to right to know.
So all in all, we do open adoption for our children. We do it because placing a child for adoption and signing over your parental rights to another family doesn't mean you also sign over your right to love and know your child is safe and healthy and well adjusted. It's not always easy and it's not always natural, but I truly feel it's what's best for all parties involved.
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