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.

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.

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.

The Beauty of Motherhood

There has been a story I have been following the past few months. A story of heartache and beauty, joy and sorrow. It has been the story of country gospel singer Joey Feek and I've been reading the blog posts of her husband Rory. In case you aren't familiar with her story (though I'm sure many of you are to some degree), Joey was diagnosed with cervical cancer and when treatments were no longer working, she decided to discontinue them and live out the rest of her days with the ones she loved.

Immediately I felt deeply connected to their story because like me, Joey was a "rockin' mom". Her baby girl, Indiana, is only 1-2 months old than my boys and she also has Down syndrome. You don't even need to meet another mom of a child with Down syndrome in person to feel that instant bond. But to have Indiana so close in age to my sweet Asher, just makes this story that much harder for me to read without shedding tears.

Joey passed away recently, or as her husband says, "her dream came true" as she is now with Jesus. I've grieved this story more than I probably should have considering I never knew Joey, but it sounds like she was a beautiful person with a beautiful heart. Much of the reason I have grieved though, isn't really the loss of Joey, but instead the pain the comes with putting myself in her shoes and thinking about leaving my little boys.

Motherhood is so incredibly beautiful and while we all "know" somewhere deep down that heaven is far more beautiful than any earthly thing, even when it's hard to imagine, we also know that there are a lot of really really beautiful things here on earth that we are incredibly privileged to experience. Motherhood just happens to be one of them. The opportunity to raise sweet children and watch them grow and change and learn and then transform into adults, there is nothing like it. And I am learning that the age my boys are at, while at times trying, is absolutely incredible. All they learn, and how quick they pick everything up, while wanting to become helpful and do everything we do, mixed in with the joy and innocence and creativity of toddlerhood. It's amazing.

There is this other thing though. When you have a child with special needs, raising them takes on a different meaning because they will never be completely independent like a typical child. As moms, we want to be there to be our child's advocate and make sure they get all they deserve. We want to make sure that they are cared for and becoming the very best they can be, accomplishing all that they can. Helping them to accomplish things that others might not have helped them to accomplish because they didn't think that they could. We want to be there to be part of it all and even Joey uttered the words that they all had been thinking at one point. She wanted to be there to raise their sweet daughter. It's not that we don't trust our husbands to do this, we just want to be there for it as well.

Now Joey is where there is no more pain and she will no longer grieve not being able to raise her daughter and Rory and Indiana will continue on living out their days on their farm, I'm sure taking walks out to where Joey is buried to visit. And now, I will go and hug and kiss the sweet boy quietly playing on the floor, while his brother sleeps in the other room with his daddy, praising God that he chose me to be a "rockin' mom".

Almost two...

Dear sweet boys,

It's hard to imagine that it was almost two years ago that you joined our family. A lot has changed in those two years. Jobs and work schedules changed so that I could be at home with you as much as possible. Daddy finished school and started working at a new job to better support our family.

But not as much has changed with us as it has with you. In two years you have gone from tiny babies, completely dependent on us, to little boys that are being more and more independent each day. Yet at the same time, you still have so much baby in you that needs your mommy and daddy.

Asher, you motor around our house by either crawling or using a walk-behind walker or gate trainer. You are trying to sign almost anything we show you and you are trying so hard to say words. There is no doubt in my mind that you will soon be walking and running and of course giggling with Lucas.

Lucas, you are a bundle of energy that walks, runs and climbs. You learn new words each day and want to help or be involved in everything. You love those around you so sweetly and innocently.

Every day I'm always amazed at both of you and how attentive you are and how you absorb everything like little sponges. Each developing at your own pace.

There is something else that has changed in the past two years. The hole that was in our family, lives and hearts, has been filled. My heart has gone from aching everyday from the absence of children, to exploding each day with love and joy with your presence. I feel content. I figured by now that familiar ache might start making it's way back in, but I am truly content (and many days I even feel maxed out just caring for you energetic boys!).

If God chooses to bring more children into our family, we will welcome them with open arms and open hearts, but if not, please know that you two are enough. Even if that ache resurfaces on occasion, it is just something mommy has to work through. It has nothing to do with you. We chose you two years ago and we choose you every single day since.

We love you so much and we can't wait to see what the next year and every year after brings!

It's 10:30 pm and I should be sleeping, but this post came to mind so I decided to write in the peace and quiet of the night. I've been a bit absent lately. We've had a rough winter health wise. Elias had pneumonia in December, I had the stomach bug and then a bad respiratory virus in January and then February met us with Asher being scary sick for about 2 1/2 weeks, 3 trips to the Dr. during that time ending with being sent to the ER and being admitted for an overnight stay in the hospital with lots of IV fluids and 4 rounds of antibiotics. We were discharged Friday night and then Lucas started vomiting Sunday night continuing through today. So needless to say, we are ready for March!

But really, that isn't what this post is about, just an explanation as to why I've been absent. This post is about direct sales. If you are on Facebook, you likely see a number of your friends posting about products they are selling and talking about why they are so awesome. Maybe they add you to groups or events and if you are like me, you might be added to 3 different events all selling the same product at the same time (just so you know, you can leave those groups and events on your own) Let's face it, direct sales can be annoying. But I'm going to try and open your eyes to the flip side of direct sales, especially as a special needs parent.

I too am involved in direct sales. I NEVER thought I would get involved in direct sales again. I'm not a sales person, and in the past I've actually lost money on the products I've tried to sell. (Don't worry I'm not actually going to try and sell to you in this post). But then I found a product that called to me and that I knew I could enjoy selling and feel good about selling, mainly because it sells itself. I now sell Steeped Tea and I love it, but that's besides the point.

The point is, as I look at my newsfeed and all of the sales posts that pop up, I realized that a lot of us are special needs moms. I have more moms with kiddos with special needs on my newsfeed than most, because we tend to band together and seek out each other's friendships and support even if we've never met in real life. But the real question is, why are we so drawn to direct sales? The answer is this: when you have a little one with special needs, working full time outside of the home is harder. It's not impossible because there are parents who do it every day, but right now Asher has therapies 4 times a week. Thankfully, we live in an area where therapists come to us for now, but if I worked full time outside of the home, I would miss out on most if not all of these therapies. I want to be there when our speech language pathologist comes and asks me if Asher is making new sounds or saying new words, I want to be there to tell them what he does on a daily basis that he is refusing to show them during their half hour session, I want to be there to know what they are doing and how they are doing it so that I can work those same things throughout the week. I want to be in the loop.

On top of therapies there are extra Dr's appointments. We are fortunate, Asher doesn't have a lot of extras, but he does have to have his ear tested annually, blood drawn every 3-6 months, a trip to the ophthalmologist every 6 months and as you can see from above, an illness that Lucas can fight off on his own easily, can land Asher in the hospital with dehydration and signs of pneumonia. This makes it hard to hold a job, when you inevitably need to take more time off to accommodate these extras. I have friends who are taking their littles to Dr's 1-2x a week or more.

So direct sales that can be done from our phones or computers are a great option, whether that be in the waiting room at an appointment, or from the couch in our living rooms.  They allow us to feel like we are contributing to our family's income, while being home with our little ones and available for therapies and appointments. It also becomes something that we can do for us. An escape of sorts from our job on the home front of picking up toys, doing laundry and dishes, changing diapers and wiping noses. It gives us a sense of purpose beyond being a mom and wife, both incredibly important jobs, but not our entire identities.

For a special needs parent, direct sales might be the only work beyond our homes that we can be involved in for a few years. So the next time that we pop up on your newsfeed and your tempted to block our posts, remember, we are doing this for our families. We might love what we sell, but at the root, our families are our motivation.

Choosing to be "unbusy"

A few months ago, I read a perfectly timed blog post about being "unbusy" or "still". For the purpose of this post I'll be mostly using the word unbusy because it applies more to where I'm at in life. When I read this other blog, I had been feeling stretched and with a lot of demands on my time. Asher had, and still has, therapy 4 times a week. I was, and still am, trying to build my business so that I could decrease hours at my other job 3 evenings a week and half days every Saturday. At the same time I was feeling like I just needed to be home with my kids more. Then I would get requests or invitations to do this or that and all I really wanted to say was no. I had one person in particular, a massage client, that kept asking me if I wanted to go get coffee (don't worry, they won't see this). I should have said no from the beginning and simply stated that this is  a boundary that I like to keep between therapist and client (unless we have a friendship prior to them becoming my client). Instead I was caught off guard and awkwardly fumbled and said "maybe" or something similar thinking that if I told them enough times that I couldn't because of this or that, that they would probably stop asking. In case you are wondering, this is not a good technique to use.

Finally I just came out and said that I was just "too busy". They responded that maybe I should organize my time better so that I wasn't busy all the time. They wouldn't have been off base with this comment if my reasoning was really that I couldn't schedule it in, but saying I was too busy was just easier (and kinder so I thought) than saying, "I just don't want to, but I don't have the words to explain why I don't want to". I had the time to schedule it in, but it meant getting a sitter to watch my boys while I went out to coffee that I should have never agreed to in the first place.

Then I read this blog and she talked about being "still" or "unbusy" and I finally had a word to describe why I didn't want to go get coffee. What I really felt was this need and desire to be "unbusy".  This desire to not have to try to fit something else into my schedule that took my away from my kids and left me feeling stressed and guilty. To not have to go anywhere or do anything other than stay home, work around the house, cuddle and play.

We all need times where we take time away from our responsibilities and take care of ourselves, but if I'm going to do that, I really want that time to be refreshing and restoring, not something that leaves me feeling stressed. My desire to say "no" had nothing to do with this individual personally, it had everything to do with me and my desire to just be home and present.

We also all need time to be unbusy or still. Depending on where you are in life, one word might fit better than the other. It's hard for me to use the word "still" when I have two toddlers in the house that are constantly demanding my attention, but simply not having to do something or be somewhere at a certain time feels unbusy. There are even some days were I wake up, and it's raining or too cold to walk the dog and Asher has no therapies, which means I don't have to rush to get all of us dressed and the house semi picked up (or at least make room on the floor to have therapy) and I feel like I can take this big deep breath of "unbusyness" (I know, not a word, but you get the point).

So in the future, if you invite me to do something and I say I can't, it might be because I'm practicing being unbusy. Not because I don't value you, or our friendship, but just that I need to not put something else on my schedule at that time.