Initial thoughts on "Born This Way"

You may have heard that there is a new series out on A&E called "Born This Way". This show features adults in their 20's and 30's who have Down syndrome. It's a reality show that is trying to highlight all that adults with Down syndrome can do, as well as the obstacles they face. It shows their relationships, work and how they live their lives.

Going into this show, I had mixed feelings. It can be hard and scary to see adults with Down syndrome, because sometimes when I see them, I actually see Down syndrome. I see the obstacles and limitations they face rather than seeing who they really are. In some ways I'm ashamed to admit this, but it seems as though a number of other parents who's children are Asher's age feel the same way, so I'm going to put it out there because it's real. This doesn't mean that I don't accept him for who he is, it just means that from time to time I may struggle with the realities of his diagnosis. It doesn't change my love for him and who he is or my acceptance of him exactly the way he is because without that extra chromosome he would lose some of what makes him Asher. It just means that as he grows and changes we will face new and different accomplishments and obstacles that we will have to jump over.

So from the first episode this is what I gathered and felt: joy and hope mixed with some sadness. The young adults featured were funny, witty and ambitious. They had much of the same hopes and dreams as any young adult. Yet, it was noticeable that while they all spoke quite well, they all had speech impediments (I'm not sure if that's still the politically correct word, so my apologies if I offend). I feel like when one doesn't have clear speech or speaks more slowly, an assumption about their intelligence is immediately made about them. If someone has poor grammar we are quick to label them as uneducated, if someone speaks clearly and eloquently, then the opposite is assumed. It saddens me that Asher might be judged on how his words sound vs what he is saying. Or maybe I am just looking in a mirror and facing my own judgements that I am quick to make...

That beings said, I LOVED watching them sit around at their center having a deep and intellectual conversation about the word and diagnosis of Down syndrome. What it means to them and the choices that their parents made when topics like abortion were brought up in the case of prenatal diagnosis. I actually loved that they knew their stories, both the good and tough.

I loved that Megan had started her own business, went to college and that she desired to live on her own, even though it hurt my heart for her mom who was trying to be brave and let her fly while knowing she may still be living several states away. If Asher ever wants to start his own business, I'll put in the endless hours it takes to help it succeed.

I loved that several of them stated that they love who they are Down syndrome and all. I love that they don't let it define them and I love that one even said she doesn't know if she would change that about herself if she had the chance. Oh how I want to foster that love and self acceptance in my little boy and I know that starts with me.

My heart hurt for Elena as her mom admitted that it took 20 years to fully accept Elena as she is because she was born in Japan where it is a disgrace to have a child with a disability. And now Elena struggles to even hear the words Down syndrome because she doesn't know why God "gave it to (her)". This is a huge lesson for me as a parent. I will from now on be so careful to never let Asher know if I am struggling with part of his diagnosis, whether that be fear or some other feeling. Down syndrome will not be an unspoken word in our household, but it will also not be the focus of our household. It will just be a part of who Asher is.

Lastly, I learned that I need to put away my own fears for the future. There have been times (more when he was really little and his delays weren't apparent yet) that I didn't feel ready to go to certain events where there would be individuals of all ages and all abilities because I didn't want to have to face the parts of the future that scared me or were harder for me to see. But, after watching this episode and learning how important it is for him to have peers like him, I need to put that aside because not going to events to spare my feelings and avoid my fears is selfish. I will make a great effort to become more involved (when time allows) in events that highlight all ages, not just children that are his age.

I'm sure as I watch the rest of the show each week that it airs, I will have new thoughts and feelings. I want to reiterate, when I look at Asher I don't see Down syndrome. I just see my son. Yes, when lined up next to Lucas I do see where he is delayed, but at the same time it just seems like where he is supposed to be. If he's on a timeline it's only because I put him there. I am so thankful to be his mama and I wouldn't change him for the world. This post is just about the fears that I face when thinking about his future because in watching this show, I had to stare it in the face. I think that if you can watch it, watch it. Get to know the people under the diagnosis and don't limit those in your own lives who have disabilities.

You really need more wraps?

For Christmas this year I decided that Elias' gift to me (aka me choosing a something, buying it for myself and saying it's from him because it came out of our joint checking account), would be the wrap that I have been eyeing ever since I learned about the world of wrapping babies and "legacy wraps".

In case I'm speaking a foreign language to you right now, a wrap is basically a long piece of fabric that you use to carry your baby on your front or back, much like of the rest of the world does. It works like a traditional baby carrier once your baby is on, but it tends to be more versatile and, well, prettier than a traditional carrier, and by traditional I'm talking about what you typically picture when you picture a baby carrier.

Wraps come in various sizes and materials. There are stretchy wraps and woven wraps and then there are wraps that are a hybrid of the two. When I first learned about wrapping, I started hearing people refer to "legacy wraps". This is basically a wrap that has some sort of significance for you. It might be a wrap that came out on a baby's birth date or birth month or it might be something different. For me, it was an adoption wrap called "chosen". On this wrap there are two hearts batiked onto the fabric. One little heart coming into the big heart, just like the little hearts of my children have come into my heart. I loved everything about it, but I held off and didn't buy it for a number of reasons. But that wrap has never left my mind.

You may wonder what the big deal is. It's just a wrap and our wrapping days are limited. But this is why it held importance to me. You may remember me writing about trying to induce lactation to breastfeed my babies and how it didn't work out the way I had hoped and planned. Because nursing didn't work out, baby wearing became my "nursing". It bonded me to my babies by keeping them close against my body. It soothed them when nothing else would and has made parenting in general so much easier. Now that they are bigger, Lucas will bring my a wrap or carrier for me to put him on my back for some "uppies" and mommy snuggles. Most days this is how Asher goes down for a nap. It is so special to be able to wear my babies and to have a wrap that has as much emotional significance as wrapping itself means so much to me.

So you to, it maybe just another wrap or piece of fabric, but to me it represents so much of our relationship and if it never carriers another baby beyond the two we have right now, then it will eventually find a place in our home where it will represent the sweet memories of the first years of parenthood where I carried my babies.

As we exit October and enter November we also leave behind Down syndrome Awareness Month and enter into National Adoption Month. If you have been following my blog long, you know what adoption means to us and our family. You know that it has brought us more joy than imaginable and you also know that has been the greatest gift we have ever received. But something you may not know is that it also brings grief.

First and foremost it brings grief to the strong women/couples that choose to voluntarily place their child(ren) for adoption to give them more. Placing a child for adoption is a choice, but just because it's a choice does not mean that it doesn't come with pain. Open adoption can alleviate some of that pain by allowing birth parents to be part of their child's life through pictures and visits, allowing them to watch their child grow and thrive and to see that their child is indeed loved and feels loved. I know Asher and Lucas' Mama Kate hurts from time to time all while being at peace with her decision. It's complicated and beautiful and painful.

Adoptive parents grieve. I'm not talking about the grief that we face of the dream we originally had of growing our family through the process of pregnancy and biology and looking into a child's face to figure out who they look like, even though that grief is very real. Whenever you have to let one dream die to allow another to begin it brings grief. But the grief that I am referencing here is the grief we feel for both our child's birthparents and our children themselves. We grieve for their birthparents knowing that we have the opportunity to be mommy and daddy and raise the child that they love just as much as we do. We grieve for the process that they have gone through, the pain of coming to the decision to place, the signing of the papers, going home without their child, and then not being with their child each and every day, watching them grow. We grieve for our children and the complex emotions they will face as they grow. As they begin to process their story, when they struggle with the why's, when they miss their birthparents and when people unknowingly make insensitive comments. For those that have been adopted out of foster care or from an orphanage setting, we also grieve for their past. What they experienced at such a young age, the years they spent not having a family of their own, and the years that we as their parents missed out on.

Lastly, children who have been adopted grieve. They grieve the loss of their first families. Some get to know their first families through open adoption, other's don't have any information on their first families and feel that hole in their story. Regardless of the reasons they were placed for adoption, these children grieve because adoption comes with loss. This is something we will learn more about as our children grow and get older.

Adoption is beautiful and messy, it comes with joy and it comes with grief. I focus mostly on the joy, but it's important to recognize that there is another side.

To my newly married self

After watching a video today, I started thinking about what I would say to myself  if I could write a letter to myself when I was newly married. So here it goes.

Dear newly married me,

You have such an amazing adventure ahead of you! Enjoy every moment. Everyone is right when they say it goes fast. I know that you are so excited about the possibility of starting a family and how you begrudge it when someone tells you how young you are. I also know that you know that starting that family might not be so easy and it won't be, but maybe a few of these words will make it easier. You have an amazing husband and God is going to give you some incredible years to share with just him before He gives you the gift of children. I know that right now you don't think you need those years and you even think that you don't want all of those years, but believe me when I say you will look back and be thankful for that time. God is going to call you to some amazing places, you will meet some amazing people and He will do awesome things in your marriage, if you let Him. Know that you WILL become a mom, and it will be the most rewarding thing you have ever done in your life, but until then you CAN be happy and fulfilled and you CAN make the most of every opportunity placed before you. Don't go into that dark place of depression that steals your hope and joy, instead know and trust that your day is coming and it will be beautiful. God is planning something great and great things need time.

I know you see others starting families. Some of them got married at the same time or after you, some of them weren't planned and it's hard to watch and wait and wonder why it's their time and not yours. Just know, that age that you thought was "old" for starting a family, really isn't that old and your children will change your relationship with your husband and friends forever in ways you may not expect right now. Take this time, build a strong foundation and set the best example that you possibly can for your children or you might find that you wish you would have focused on this a bit more.

If you could see your future kids, you would know without a shadow of a doubt that they are so worth the wait! I think you would also know why God is taking so long to prepare you. They really are special.

Even though you hate hearing it, you ARE young and you have the world ahead of you. You will someday look back and wish you could go see the world and how others live at the drop of a hat without thinking about how it will impact those little people that you trying to raise into exceptional adults. Now don't get me wrong, you won't feel as though your children are keeping you from doing these things, you just might wish you had gone and done and seen more because one day it won't be quite as easy. Not impossible, but just not as easy.

You will enter into a new phase of life that holds different treasures, but don't wish this time away. This time is part of your life and your story. This time is beautiful and embrace it in all of it's beauty. Go ahead and cry tears of frustration that you have to wait longer than others, but then move forward and choose happiness because one day it won't matter that your children took a little longer to come to you. It will just matter that God chose you to be their mom.

Love,
Your future self

Being Asher's mom

Being Asher's mom has and will continue to change me. In case you are new to our story, Asher has Down syndrome. I never envisioned myself as a "special needs parent". In fact, that was something I feared. When you have a child with special needs you stand out, which is something that I enjoy less and less the older I get. Advocating for my child doesn't come naturally to me, yet it's part of my role now and I do it for him.

Not everyone notices at this point that Asher has Down syndrome. They see that he is cute, if they ask his age they might be able to see that he is delayed, but I am rarely asked if he has Down syndrome and people don't stare yet because if it. Right now they stare because I have two children under 2 and they are trying to figure out if they are twins or not or because I look frazzled like many moms of young children do.

Asher really is a light in our family. He brings joy with his smiles and giggles. He brings celebration with every milestone he works so hard to meet. His normally relaxed personality is in stark contrast to Lucas' higher strung, busier personality. He loves to give hugs and kisses, be held and loved on. He is really perfect in so many ways.

He makes me see the world differently. He makes me more aware of other parents and children with special needs. Creating a special bond between us immediately upon meeting. He makes me slow down and not rush milestones and development, knowing that he will get there in his time, not according to a table or chart. He brings out a passion in me to fight for him and his rights even when it's uncomfortable and may lead to making tough choices. He also makes me fear for his future, how will he be treated and what happens when one of us isn't there to "protect" him. He opens my mind to how someone can be so valuable to those around them that other's might not see as being able to contribute to society and how God can truly use anyone, regardless of their ability or disability. He shows me how blessed I am to have him as my tour guide on a journey that I feared and wasn't sure I wanted to take.

When we were deciding whether or not we wanted to be considered as potential parents to adopt Asher and Lucas, I was so afraid of the far off future. God kept telling me that I couldn't focus just on that, but it was hard. I was afraid that Asher being a member of our family might mean that we would have to alter travel and vacation plans, that we might not be able to serve in international missions again if that was part of God's plan, and that Elias and I might not get to enjoy our retirement years as a couple because he would always be dependent on us.

I.was.so.silly.

Now I have learned that Asher has an amazingly bright future. We will travel and vacation to the same places that we would have if he was typical. If God calls us back to international missions, he will come and be a light and probably reach people in a way that we would be unable to without him. I now know that he can go to college (if he wants) and live semi independently with other adults with developmental disabilities and possibly even get married (if he wants). But now I want that for HIM not so that Elias and I can enjoy the freedom of retirement. He has changed my heart and I want so much for him and his future! Each night that I am home, I sign him my favorite song for him as he falls asleep in my arms and I know that I am blessed to be Asher's mom.

The process of making pickles with twin toddlers

Today I attempted to make pickles while my twin toddlers were awake, it went like this:

1. Get the cucumbers out.

2. Lucas decides he wants to wash dishes.

3. Get clean dish water drawn with clean dishes for Lucas to "wash". 

4. Get Lucas set up on chair to "wash" dishes at the sink.

5. Wash cucumbers and beginning slicing. 

6. Asher decides that he too wants to "wash" dishes. 

7. Get another dishpan with soap, water and clean dishes to put on a towel on the floor. 

8. Continue slicing.

9. Lucas no longer wants to wash his dishes, he wants to wash Asher's dishes. Help Lucas off of the chair to play in the water on the floor. 

10. Baby gate the children into the kitchen to keep soggy toddlers contained to hard surfaces. 

11. Lucas dumps water all over the floor, grab 3 more towels to dry the pond that has now formed on the kitchen floor. 

12. Finish slicing cucumbers only to find out that they need to be salted and sit for 90 minutes. 

13. Clean up all the dishwashing activities, get towels in the wash, return baby gates to their proper stations.

14. Realize 30 minutes later that salted cucumbers should be covered and chilled. 

15. Write this post while I wait for cucumbers to be ready to be pickled. 

16. Finish the project tomorrow.

Becoming a doula after infertility

As many of you know, in March of this year I made the decision to pursue continuing education in prenatal and postpartum massage as well as a massage doula. Some of you may be wondering how I came to this decision after our long struggle with infertility. Others of you are wondering what the heck a doula is and what one has to do with infertility at all. A doula is a non-medical, labor support person who provides education, emotional and physical support to women and couples during pregnancy, labor and delivery, and shortly after birth. As a massage doula I can provide regular prenatal massage throughout pregnancy, massage during labor along with typical birth doula support, postpartum massage and newborn massage instruction. I’m hoping to add fertility massage on to all of that in the future to provide all encompassing care from prior to conception all the way through learning how to massage one’s new baby. 

Now that you have a description of the work I am trained to do, you probably understand a bit better how infertility and becoming a doula impact each other. Ever since I was in massage school, I was drawn to prenatal massage. I even created a business plan in school based around my dream for my future practice that offered various types of massage with specialized training in all aspects of prenatal massage, from fertility massage all the way through to newborn massage instruction. However, that was also the time that we were just beginning fertility treatments.

As our failures with IVF began to take a heavier toll and adoption seemed financially impossible, I put all of this on hold. I was not in a healthy place to focus on helping women conceive, massaging them throughout their pregnancies and then teaching them to massage their sweet new babies. I was struggling with bitterness, depression and anger with God. No one wants a bitter infertile woman as her massage therapist during pregnancy, and frankly, at that point I probably didn’t want to be her therapist throughout her pregnancy because it just hurt too much. In retrospect, regardless of our infertility, providing general massage therapy without a specialization when just starting out in the field, provided much needed experience that will benefit me for years to come.

With time however, God began to heal my heart, the bitterness began to fade and depression was slowly replaced with joy. Then came Asher and Lucas. Every day that I got to wake up and be their mom, my heart sang, and that joy and healing continued to increase exponentially. Just shy of their first birthday, I decided that it was time to begin focusing on my massage practice again after putting on the back burner for a year. I began looking into continuing education and remembered a program for training as a massage doula that I had seen around the time I graduated from massage school. God had been working on healing my heart and I knew that emotionally, I was ready to take this step and continue on the path that He had called me to nearly 4 years earlier.

I began my courses with excitement and even though I have had to face some of the emotions that I haven’t had to deal with for awhile pertaining to experiences that I may never get to have, I continue to be excited about this new path that my career will take. I will still offer the same massage services as before, but with the added specialization in prenatal and postpartum massage as well as massage doula services. I am now in a healthy place to support women and couples on their journey to growing their families, in fact I think that God will use our journey to allow me to even better support women and couples, and it is an honor to do so.