A few months back, when we were just experiencing the tip of the iceberg of Elias getting sicker, another CF wife posted in one of my Facebook groups, asking if any of us ever felt like we at times were losing ourselves to our husband's disease. At the time I didn't understand. How could I lose myself to a disease that wasn't mine? I could see how he was slowly losing who he used to be, or rather, that who he was was slowly being taken away from him, but me? I wasn't losing myself to this disease. I didn't think that way mine to own.

But now, now I get it. I get how as a caregiver, you can lose yourself to someone else's disease. Your entire being becomes about caring for that person and fighting for them when they can't fight for themselves. Endless phone calls that make my blood pressure go through the roof and make me want to pull every single hair out that isn't already falling out because of stress. Trying to balance being a mom and a wife and a small business owner. Spending countless hours filling out paperwork on his behalf, driving him to Dr's appointments, sleeping in recliners in his hospital room or hotels or guesthouses for days at a time, dropping everything at a moment's notice to take him to the ER, and then trying to at some point go home and spend time with our kids, while relieving family who have been taking care of them, while he's stable enough to do so (I don't have a great track record with that by the way). I eat whatever sounds good and is available in that moment (and is usually unhealthy) and hardly ever get any exercise. To exercise I need to convince the boys that they actually enjoy walking in the stroller or go when someone is available to watch them. Practicing self care feels nearly impossible, there just isn't enough time left at the end of the day. Oh and did I mention that I do actually work occasionally?

Some days it feels like this is all I am, that there isn't time for me anymore. There is truly no truer test of love than walking the road of chronic, life threatening illness. You simply cannot fight this hard, day in and day out for someone you don't love deeply. I do it because he deserves it, but also because life without him is almost unimaginable, though I do my best to convince him that we will be fine if things don't go the way we hope, because with time, we will.

I shared with a friend tonight that this all seems so surreal. That last year at this time we had no limitations as a family and this year we are facing a double lung transplant as our only option for a future together. It's still hard to comprehend how his lungs changed so very fast, but I still hold out hope. Each time I talk with someone who has had a successful transplant, my hope grows and I cling to that because I see what we can be given. I'm not naive and I know that our story could be different, but for now I cling to hope.

Enjoying the extended baby phase

Lately when I pick up Lucas I am struck by how solid and long he feels. He's not particularly tall, in fact he's rather short, but to me it feels like he is all legs. He now speaks in sentences, is pretty much potty trained and tells me "no kisses!" as he wipes them away. And even though he is my baby, he is no longer a baby. At nearly 2.5, he has grown into a little boy who desires independence, and while he still needs his mommy, he likes to remind me that he can do it on his own.

Then there is my sweet Asher. Asher who doesn't yet have many words and still has that new toddler walk to him. Who loves to wave "hi" and "bye" at everyone he sees and can light up an entire room with one of those single words. He loves to kiss everything and everyone right now, making everyone he meets feel like the most important person in the world. And petit, not yet 30 inches tall, he walks up to me saying "ma, ma, ma" and stretching those little arms up at me to pick up him. When I pick him up, his still soft body melts into mine and I get to bask in the extended baby phase just a little longer.

While I don't rejoice in his delays, knowing that everything comes just that much harder for him, I know that I am allowed to enjoy this little extra gift that comes with that extra 21st chromosome because it won't be long when he will be telling me "I do it", or "I walking". When his little body will start to feel a little longer and more solid and he will wipe away my kisses. Today I get to enjoy having my baby be more of a baby a little bit longer.

The Gift of Time

The weekend before Elias was admitted to the hospital, we began talking about him going on disability or at least cutting back to half time work. The humidity was heavy and it was getting harder for him to breath. I called the Cystic Fibrosis disability attorney to talk about the process so that we could be prepared if we chose that route based on his Dr's appointment the following week. Money was a concern since Elias was our main source of income and received no time off, so he really wanted to work at least 20 hours a week (preferably 30). I wasn't convinced and said 20 should be his max, but disability might be a better option.

However, we never made it to that appointment. On Thursday Elias was admitted to the hospital in Syracuse and we both knew in that moment that he really needed to go on disability. It's humbling to live in a culture where men are expected to provide for their families while not being able to work. Even though women work outside of the home more and more, if one parent stays home, it's usually the mother. Disability has been hard to accept, but I reminded Elias that we have been given a gift. The gift of time. Not everyone gets the gift of time, but we do.

One of the beautiful things that has come out of Elias being home the past two weeks is his relationship with Lucas is changing and growing. Lucas has always been all about mommy. Over the past two weeks, I've been working on growing my business so I'm home a little less and Elias is home all the time. He's now starting to ask daddy to play with him when before it was all about "mommy play". It's been really sweet to see.

A couple of weeks ago I shared a blog post about some of the things I was thankful that Elias and I were able to do before his health declined this year like our year in Gambia, going to the Grand Canyon, even the years we struggled with infertility and had time for just us.

Today I'm thankful for simpler things.

Earlier this summer we went to Water Safari. Our tickets were paid for by The Northern Regional Center for Independent Living and there wasn't a rain date. The weather wasn't looking promising, but we got up in the morning and went. We were blessed with a dry morning with comfortable temperatures, just long enough to fit in most of the rides we wanted to try before lunch and nap time. As we finished our lunch, the rain came, but we were already planning on heading home so that the boys could sleep in the van on the way home. We had gone into this day saying that if the weather didn't work out we could always go later in the summer. Lately I've been seeing a lot of pictures of people who have been going to Water Safari before the summer ends and I have been aware that Elias could not currently go and participate. His health wasn't great then, but he was stronger than he is right now.

Today we went to the zoo. It was hard for him and we knew going in we might not be able to see the whole thing. He pushed through, wearing his oxygen, and even though he was quite tired by the end, he was glad he went. I am so thankful for all of the memories we have made and continue to be able to make. Life has taken on a new normal for us and what we can and can't do will likely fluctuate throughout the coming years, but we will choose to continue to make memories however we can with our gift of time.

Choosing to be thankful

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.

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.

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.

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.