I Planned My Trip To Holland

For those of you who have never read the story, “Welcome to Holland,” it is a beautiful metaphor of the journey that parents go on when they find out that their child has special needs (I encourage you to check it out here: http://dsnetworkaz.org/holland/). It talks about how even though you were planning a trip to Italy but ended up in Holland instead, Holland is beautiful in its own way and it ends up being okay even though it wasn’t what you were expecting.

We chose Holland. We adopted our son who has Down syndrome. We fully expected his therapy sessions, his slower milestone gains, his amazing feats of double-jointedness and his beautiful little almond-shaped eyes. But somehow Holland ended up simply being stop number one on our journey around the world. We never expected his cancer, his kidney failure, his seizure disorder, his catheters, his feeding tubes and all of the other issues that he has that have nothing to do with his Down syndrome.

We chose Holland. I was angry. Why couldn’t we just settle there? “God, you asked us to go to Holland and we obeyed. Why are you doing this to us?” Instead of Holland, we spent hours, days, weeks at the hospital. They were our slums of Calcutta, our journey of sickness and pain. I just wanted Holland back.

But then something else happened. We moved on. We began to climb. When my son said, “mama” for the first time after we were told he would never talk, we breathed in the clean air of the Swiss Alps. We made it to the top of the mountain and we were stronger for it. We saw beautiful scenery again and hope for our future travels.

We started in Holland, but then we headed in many directions, meeting other amazing travelers on the way. Parents who were also going on this world tour who had been to more destinations than us gave us courage, advice and a helping hand. We saw the beauty in their travel-worn faces. We felt their strength as they pulled us through the deep valleys. Our difficult journey around the world began to actually feel like an adventure.

We found rest in our friends, family and church. They were our soft and warm beds after weeks of backpacking through the muck and sleeping on the ground. Our doctors, nurses and therapists were our tour guides, taking us through difficult journeys so that we could reach beautiful destinations. And slowly, Holland didn’t seem so important anymore.

We chose Holland, but we didn’t stay. I’m so glad that we left. Being in one place forever gets boring after a while anyway, right? Becoming world travelers has made us stronger. We have pushed ourselves to the limit to find out that we are brave, we are smart, we are capable parents who have a difficult journey ahead. But we aren’t traveling alone.

So we’ve thrown away our map. Goodbye Holland! It no longer matters where we go. There is no final destination because this journey is one that takes a lifetime. It only matters that we are traveling together.


Dear Seizure Disorder…

Dear Seizure Disorder,

I hate you. I can’t begin to describe how much I despise you. Our son was already facing a host of challenges when you showed up and took over our lives. You added meds, treatments and long hospital stays. You took away my son’s ability to sit up, roll over, kick his legs and hold up his own head. I hate you.

As an adoptive parent of a child with Down syndrome, I thought we were ahead of the game. We expected some challenges and jumped into therapy and skipped the surprise diagnosis discovery that biological parents have to go through. But then the seizures showed up and we were thrown into the deepest, darkest places in this giant ocean of grief that we try to keep our heads above the waves in. We watched as our son slowly deteriorated. Now, instead of wondering how long it will take him to reach milestones, we wonder if he ever will. Our talks have gone from therapy equipment to G tubes, tracheostomies and vesicostomies.

But here’s the thing you horrible disease… you won’t win this war. The reason? The more you throw at us, the stronger you make us. People outgrow you by age 3 and my son is almost 1. You have two years to do what you will. In that time we will fight you with meds, with diet, with therapy, with sheer will and endurance. Some day you will give up and we will be left standing stronger than we ever thought we could be. And you know what? Our son is starting to move his legs again. He is trying to lift his head, he is full of smiles that we haven’t seen in a long time. You have won the last few battles, but we will win the war. He is coming back to us as you disappear.

So I say to you seizure disorder, I will NOT let you define my son or my family. We won’t live our lives in fear of you and we won’t change our dreams and our goals based on what you might do to us. Someday, the horrible video of you on my computer that the doctors make me keep to share with your therapists will be deleted. I won’t give meds, I won’t grieve in your wake and I won’t stay awake wondering what you took from us as our son sleeps you off after each of your attacks.

I hate you, seizure disorder and I always will. I’m not sure that I will ever come to accept you as a part of my life. Instead, I will fight you and count the years, months, weeks, days, minutes and even hours until you are gone. I will not thank you like many people do, for teaching me something along the way. You are nothing but trouble. I don’t feel like a “better” person because I have faced you. But, I do thank the thousands of people who have prayed with us to eradicate you, to make you disappear. I have learned through them that we are loved so much and that you can’t change who we are. I have learned that God doesn’t leave me in the worst of my circumstances and that He can make some good come of even the situations as bad as the ones you create.

So until we meet again, I will not let you take up residence in my thoughts and keep me awake at night. It’s only a matter of time and we are coming to get you. We will win and you will lose. We will follow our dreams and make goals and nothing you try to do can stop us!


Will’s Mom

Words From My Son’s Other Mother

When my husband Scott and I decided to adopt a baby with Down syndrome, I played and replayed scenarios in my mind. They ranged from what it would be like the first time we met our baby to what I would say should anyone dare to question our decision or say something less than encouraging about my family. I kept thinking about all the joy, the excitement, the passion that I would have for this new calling in life. But somehow in the midst of it all, I never thought about the family that our baby would be coming from in order to get to us.

Suddenly my adoption daydreaming became a harsh reality when we found out that a birth mom had chosen our family’s profile and was interested in speaking with me further. I was given her email address and simply told to write to her and introduce myself. No scenario in my mind, or any real experience in my past for that matter, could prepare me for this moment. What do you say to the person who might choose you to raise and love her child? How do you make contact without sounding desperate? Do you share personal stories or try to remain neutral?

I don’t even remember what I first said to her, but I managed to make contact. Then things got even harder. I was prepared to feel great about adoption because I would be “saving” a child from a bad situation. But as I got to know this stranger through her words on my computer screen, I realized that I wasn’t saving anyone. This was an amazing woman who didn’t need me to be the hero. She was already being the hero by choosing what was best for her baby and not what was easiest for herself. I tried to be as honest as possible as we emailed back and forth, asking and answering questions and trying to be as polite as possible. Then I got the email.

Yes, we have chosen you and Scott, so please proceed with the social worker…

This small sentence that has forever changed my life, given me the gift of my son and inextricably linked my life to the life of this stranger. We set up a time to meet in person.

Scott and I walked into our adoption agency as my mental scenarios began again. “Oh, maybe she’ll say this… then I’ll say this…” “The social worker will probably usher us into a private room where we will see her…”  When we walked in the doors, there she was. Just sitting in the waiting room reading a magazine. She looked at me and smiled and said, “Bekah?” and I shook my head yes and we hugged. I felt my son against my belly through hers. And suddenly my adoption harsh reality moved into the realm of adoption pain. She was beautiful, had her life together, loved the Lord like we did and had chosen us. I felt guilty that this wonderful thing in our life was the cause of so much agony for someone else, someone real, standing and hugging me.

Our little William made his entrance into the world too early and very sick. Although he did have Down syndrome, none of his medical needs were centered around it. His kidneys and liver weren’t working properly. He needed a catheter, surgery, oxygen to stay alive. He had leukemia cells floating through his little body. We were talked through comfort care in the event that he wasn’t going to make it. In the midst of the first 24 hours with our sick baby, his mom called our room, still recovering herself, and asked me if she could come and see him. More pain… She shouldn’t have to ask. I don’t have the right to be taking this person from her. We said yes.

She came in a few hours later, stood with us over his bed and watched him breathe. After a while, she looked up at me and said,

He was a fighter and I could feel him kicking so strongly inside of me. He will survive this…

More simple words that rocked my world. And again, from this person who I barely knew but who I could tell was also a fighter and stronger than anyone I’ve ever met. How was God using this person that was dealing with so much herself as my source of strength?

As the months went by and William got better and better, we sent photos to his birth mom. We even met a couple of times so that she could see him. We eventually got to know each other a little better through emails, texts and then Facebook. Then, when Will hit 7 months old, our world was rocked again. He contracted RSV and while he was in the hospital started having seizures. He was diagnosed with a rare seizure disorder that would slowly take away the abilities that we had worked so hard on in therapy. We watched as he stopped rolling over, stopped smiling, stopped moving his legs and then stopped holding up his own head. We went home to face our new “normal” only to rush back to the hospital a week later and find out that Will had a hole in his bladder and would need to use a catheter full-time.

I was heading home from the second hospital stay in 3 weeks and was updating William’s birth mom via text. I always try to sound positive and put together even now because I want her to feel like she made the right choice in giving her son to us. But she sent a text and asked how I was holding up. I answered with, “I’m so discouraged.” The response I got back, from the mother of my child, was…

It’s ok. God loves us all and He has chosen you to take care of William. He will not let you down…

… and there are no words for that emotion. I had gone from adoption being a daydream, to a harsh reality, to so much pain. Now what was it? Grace? Acceptance? Insanity? Peace…

Words from this amazing stranger. A mom like me who I love so, so much although I don’t really know her well. Small words that change the course of my life, give me hope, shape my future and strengthen me to take care of her baby, my baby, our baby.

Why Special Needs Adoption?

Our adoption finalization date has been scheduled! It is in 30 days and 12 minutes, but who’s counting, right? We began this journey in November of 2012 with me telling my husband Scott that I think we should adopt. He definitely looked at me like I was crazy. Our youngest son was 1 and we were completely broke. But I am a persistent person and once the idea had stuck, there was no going back. We told our family of our plans and I think they did everything in their power to not freak out in front of us.

In January of 2013 we attended an introductory course at our adoption agency and from there, went to classes, had background checks and fingerprinting, did a home visit, filled out an insane amount of paperwork, let social workers pry into every personal part of our lives, were matched with kids that didn’t work out, had a surprise pregnancy and subsequent miscarriage, did more fingerprinting and background checks, updated our home study, registered with the National Down Syndrome Adoption Network, got a call about a potential match, met the birth mom and suddenly had a baby. It went from feeling like forever to feeling very sudden.

I had all of these grand ideas of what I thought adoption was. “Won’t we be doing a wonderful thing for someone who really needs it?” “We can complete our family and everything will be perfect.” “We will all feel so good about it.” “We will be saving a child who can’t make it without us.” Going to our first class gave us a glimpse of how silly some of these thoughts were. I hadn’t thought at all about the grief and pain involved in the whole process of adoption.

As we went through the paperwork, we started off by filling out forms about what type of child we would take (I know, sounds crazy, right?). We went through an agency that would match us with a birth mom or let us adopt through foster care and we were mainly looking at foster care since it was virtually free. On their questionnaire, we were asked if we would take in children with mental illness, sexual abuse, autism, cancer, AIDS, behavioral issues, Down syndrome, moms who drank or did drugs during pregnancy, and the list went on and on….  Basically, we started out by looking for the “perfect” child by saying no to almost everything on their questionnaire. And surprise, we weren’t matched for months.

One night, I was up late goofing off (at a time in my life when both staying up and doing it just for fun were possible) and I started watching youtube clips. I don’t know what I was searching, but I found a short video of a couple meeting their adopted daughter for the first time in the hospital and she happened to have Down syndrome. I immediately though, “Wow, that is so cool of them. I could never do that.” But for some reason, for about two weeks after that, I couldn’t get that video out of my head. I kept watching it. Then I began to search “Down syndrome adoption” on the internet.

God was slowly changing my heart in a very unexpected way. My job involves working with people who have special needs, but I would only take the “perfect” child as my own? It seemed wrong. But what would our family look like with special needs? Would it be fair to the other kids? Would it be fair to my husband? Could I do it? I found the National Down Syndrome Adoption Network and filled out a form… then I told Scott. In retrospect, maybe that should have been an earlier step in the process.

When we were matched with Will’s birth mom through NDSAN, I was so excited until they gave me her email address and simply said, “Okay, give her a call and you two can talk about it all from here.” What do you say to someone going through so much? How do you make them think that you are the right family for their baby without sounding desperate? What the heck is the first sentence of your email going to say? All of these things were so out of the realm of my experience that it felt crazy. I sent her an email introducing myself and things moved quickly from there.

A couple of weeks after speaking with her for the first time, she sent us an email saying that she had chosen us to be her baby’s parents. We were at church and I was so excited and showed it to Scott and my friends. But that night, once the kids were in bed, Scott and I sat down and had a heart to heart that included many tears and prayers. It started with Scott saying, “I just don’t want a baby with Down syndrome” and ended with us deciding to sleep and pray on it. I hadn’t given Scott the time he needed to process it all and God needed time to work on his heart and mine.

We had to decide quickly so as not to string this birth mom along and so Scott took it to work (he works at a church) and asked them to pray for our decision. That afternoon, he ran into someone else at the church who has a daughter with Down syndrome and just bluntly asked her what she thought. He never told me exactly what she said to him that day, but he came home and said, “Okay, let’s do it.”

We went to an ultrasound and got to see our baby for the first time. It was just as incredible as when we saw our bio kids for the first time. We named him and decorated his room. I got all of the baby clothes washed. I was so excited to meet this little person in only 7 weeks until our social worker called. She gave is very few details but said that his birth mom had called and that she had a bad ultrasound that showed kidney and liver damage and the possibility of cancer. The social worker then simply said, you need to decide in the next 4 hours if you want this baby or if you want to pass and wait for a healthier one. No more explanation than that.

Scott’s heart had already been changed but mine needed work. When he said yes to this baby, he already knew that it meant yes to everything that came with him. I had said yes to Down syndrome but not the complete unknown. As we were talking and crying and praying again, Scott said, “We’ve already said yes to this baby. If you were pregnant with him, this wouldn’t even be a question that needed to be answered.” That was the end of it and we went forward with the adoption.

I’ve previously posted our story of meeting William for the first time, so I will spare you the details other than to say that even though Will was born with the complications that they warned us about, he has survived and thrived. As we have gotten through the last few months, with new and devastating diagnoses cropping up and a whole host of medical trips, medicine regimens, seizures, hearing loss, catheter training, family sign language time and on and on, I can’t help but think that if I had known all of this was coming I would have said no instead of yes. And I am SO glad that I didn’t know because knowing all of it but also knowing William and who he is makes it easy to see that yes was the right answer all along.

A few people have asked in the last couple of months if we are sure that he is the one and some have even hinted again that maybe we should choose a healthier baby and we don’t “have to go through this.” But I look back at our initial yes as being the yes that covers everything that we are going through now. When someone asks me why I would adopt a baby with so many special needs, I don’t have a good answer other than to say that God directed every step of the process and we just kept trying to say yes to what He asked of us.

I hate that Will is going through these seizures. I hate it when we think we are making progress and then he takes another major step backward. I hate it that I can’t just change his stinking diaper without having to catheterize him. I hate the meds. I hate the long trips to the Children’s Hospital. I hate that we are now the family that everyone says, “Not that it’s as bad as what you are going through…” before they talk about problems with their own kids. I hate it that I don’t know what life is going to look like next year, next month, next week or even tomorrow. And I hate it the most that William can’t smile or laugh due to the meds that he is on. But no matter how much I hate all of, I love him so much more.

I think that sums up adoption. Adoption is pain. It is grieving. It is agony at times. And because of these things, not in spite of, it is wonderful. No one can go through as much of the “bad” that we have experienced and still say yes unless they have also learned what fearless, gut-wrenching, unconditional love really is.  That is the gift that God gave us through this process. We are a family who knows how to love without boundaries, and I wouldn’t trade that for anything.

When the Bible says that we are adopted children of God, we should take it very seriously. God sees all of the terrible things that I have done, all of the bad thoughts that I sometimes have, all of the pain, the hurt, the agony, He still says yes when I ask for His forgiveness. And that yes covers everything. The past. The present. The future. I don’t know what tomorrow will bring, but I do know that God is already in it waiting to walk through it with me.

So, if you ask me why we chose to adopt, and especially to adopt a child with special needs, my only really truthful answer is, “We didn’t. God did and we followed Him through it.” Every step of the way so far has hurt and I have a feeling that future steps won’t be pain-free either, but to love someone so much that it hurts is the best kind of pain that we can experience. And I would rather feel it deeply than say no and miss out on so much of the painfully beautiful things that God has for me.

Laying it all on the Altar

We received discouraging news this week. William’s blood tests came back showing that the cancer we thought was gone may not be. We thought that we would spend his half birthday celebrating everything that he has come through, but we spent it at yet another day at the hospital. He will be scheduled for a liver and bone marrow biopsy in the next few weeks.

I decided to start a blog when Will was born in order to collect my own thoughts, to process what life is throwing my way lately and to hopefully help someone who may stumble upon it looking for answers in their own life. I’ve been able to write about huge triumphs in my family and specifically in Will’s little life. I hope that those are encouraging moments and give other people hope. I know that Will’s life has already been a huge testimony to God’s grace in many peoples’ lives.

So what do you say when those triumphant moments aren’t there? How do you give people hope when you just aren’t feeling it yourself?

I had a conversation with my dear friend who is a professor at a Christian university a couple of weeks ago. She was teaching her students the difference between a job and a vocation or calling. She wanted to use me as an example of following God’s lead in your life no matter where it takes you. I was flattered and frankly, still convinced that I am not the right person for that example since I know I fight God’s will on so many things. But since her talk with me, I have thought a lot about how we truly follow God no matter where it takes us and what it actually looks like to give Him every aspect of our lives.

Last night at church we asked my dad, our pastor, to pray over William and lay hands on him. I have been seeking God’s will in my life, but sometimes it is hard to know how to give Him everything. Pastors always say that we should bring it all to the altar, give it all to God and let Him have control no matter what. For the first time last night, I caught a glimpse of what that means. We literally stood up, walked to the front of the church and laid our baby, the most precious and important thing in our lives,  on the altar where he was prayed over by the pastor and the congregation.

This has been such a hard journey. The good parts feel great and the hard parts are completely overwhelming at times. But I am seeing how God uses both to reach others. I have had the privilege of starting a support group for families who have children with special needs. If we hadn’t gone through what we have been through, how would I be able to minister to them? I know how the bad stuff feels, and I need them as much as they need me when we support one another.

I have met new and dear friends who don’t yet have faith, but who know that I love them and the only reason that they came into my life is due to my own struggles in raising a child with medical needs. And I think most importantly, I wasn’t on a great path myself until William came along. It took God saying, “You cannot do this on your own” for me to learn to love more, grow in faith and reach out to others.

Sometimes I start to mope and feel sorry for myself. I ask God things like, “Will already has Down syndrome. Why does he have to go through the cancer, the kidney disease, the liver problems?” But then I remember that God doesn’t promise that life will be great all the time. I sure wish He did. But I do think that He uses the bad for good. I was telling a friend of mine about what we have been going through the last few weeks this morning and sharing some of my fears. And in the middle of it, she looked at me and said, “Wow. God is going to use your whole story to reach so many people.”

I don’t know what life will look like next year, next month or even next week. And frankly, sometimes I really wish that God would use someone else instead of my family and me. But I continue to praise Him, because this life isn’t all we have to look forward to. I keep waiting for things to get better. In reality, they might not get better this side of heaven. But if I am laying everything on the altar and giving God every part of my life, not just the easy parts, I know that He will take care of me no matter what I walk through.

I have been thinking of the song “Praise You in This Storm” for the last few days. It helped me through all three of our three miscarriages and I will just end this post with it. It sums up how I have been feeling.  http://www.youtube.com/watch?v=L5bLvVjJ4MA

I will praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I’ve cried

You hold in Your hand

You’ve never left my side

And though my heart is torn

I will praise You in this storm

This Side of Heaven: Special Needs and the Church

Life with special needs is unfair.

For so long now (and I’m talking centuries), people with special needs have been marginalized, left out, mistreated, abused and neglected more than any other population of people. On top of unfair stereotypes, they face a sometimes mountainous set of physical or cognitive challenges, or a combination of the two.  So the questions for believers have to follow… “Why does God allow disability to happen in the first place?” “Why would He allow people to suffer so much?” “Why give someone an unfair amount of challenges?” “Why put families through it all?”

These were questions that I never really considered other than to tell myself that the simple answer is, “Because this world is imperfect and when we get to heaven, it will all be better.” But, there is a new, continuous, unrelenting thought going through my brain now that we have our own child with special needs. I look at him every day, this amazing miracle that God has placed in my life, someone that I know I don’t deserve but have been blessed to be given, and I think over and over, “What is going to happen to this beautiful person when I am gone?”

When Will was born, things were very touch and go. No one seemed to want to say it out loud, but Will’s survival was in question. For weeks and then months, my only prayer was, “Oh God, just let him live.” I still have that prayer going through my mind every time we see his specialists. But now, the fear that I could outlive my child is juxtaposed with the fear that my child may outlive me. What a strange set of worries. All I want is for him to be okay, but then if he is, what lies ahead for us all, especially for him when I can no longer take care of him?

As I’ve been pondering all of this in my heart lately, in addition to working with many amazing adults with special needs who have parents asking the hard questions, I wonder if we as a society have the whole thing backward. Instead of asking God why He would allow special needs to “happen” to people, maybe we should be recognizing that people with special needs are made in the image of God just as we are, and asking what our response should be as Christians?

I’ve often thought of the story of Adam and Eve in the garden since I started working with individuals with various types of special needs. Not the story of their creation, but the one about their first sins. When they ate of the fruit of the knowledge of good and evil, did it change their intellect in such a way that they were smarter but also sinful? What if the individuals that we marginalize are glimpses of the people we were meant to be before the fall? Our ever-increasing intelligence as a human race succeeds to further our ability to outdo, to look better than, to be richer than, to be stronger than and ultimately, to kill more efficiently than those around us. What if God’s original intent was that we didn’t have so much knowledge but had a heart more like His?

When I go to work and have the opportunity to interact with my friends with special needs, I don’t see in them the need to compete, to be better than, or to outdo one another. I see people who love one another simply for who they are. And I am so humbled that they love me with all of the flaws that I carry.

But what does all of this mean for the church? It means that not only are we to look at people with special needs as equals, but we need to understand that there is a lot to be learned from them about faith in God and about how we are to love one another. Jesus says that we have to become like little children to understand and gain the kingdom of heaven. Some of my friends can do this much better than I can. Above all else, we have to stop looking at special needs as something to be pitied and start looking at how we can incorporate anyone with differences into our community. My son was made in the image of God, extra chromosome and all! What a beautiful thought. And I see Jesus’ love in him every day. We have to get over the fear of interacting with people who are different than us and realize that they are just as beautiful, gifted and loving as we are if we look at them through God’s eyes.

So in response to the above questions, as believers we should consider that God knows what he is doing. Instead of asking, “Why would God give someone special needs?” we should as, “Why hasn’t the church been reaching out to people with special needs when God created them in His image?” Instead of, “Why would God allow people to suffer so much?” We should be asking, “Why has humanity decided that a group of people should suffer just because they are different?” Rather than wondering why families have to go through all of the “What if’s?” we should be asking, “Why isn’t the church bearing the burdens of parents who love their kids with special needs more than anything and are scared for their future?”

My oldest son, Matthew (who is only 6), and I were having a conversation this evening over dinner about visiting his Great Grandma and Grandpa this weekend. He mentioned that Great Grandma can’t remember things anymore and I told him that when we are little, we are taken care of by our parents and then when we are old, we are taken care of by our children and that is what our family is doing with Great Grandma. My dear little Matthew, who happens to have the most beautiful and loving heart for Jesus said, “William may not be able to live by himself. Down syndrome makes it hard for you to learn sometimes. But he will come and live with me. I’m the biggest and I love him.” Now, I know that he is only 6 and doesn’t fully comprehend what he is saying, but I have to say that that little boy changed my life this evening.

What if we all looked at special needs in terms that simply? What if the church said, “You only have one child and no other children to take care of him/her when you are gone. Since the church truly is a family, you don’t need to worry. We will be that family and love him/her as passionately as if he/she was one of our own.” Lives would be changed my friends.

Life with special needs is unfair. William’s kidney disease is unfair. William’s blood disorder is unfair. His increased risk of cancer is unfair. The fact that if he lives long enough, he has a 100% chance of developing Alzheimer’s is unfair. Society’s view of him is most certainly unfair. But, we serve a God who knew what He was doing when He made my little William. Instead of looking forward to the day when Will gets to heaven and all of his “problems” are taken care of, I look forward to getting to heaven and seeing that his heart, even with its holes, was made perfectly ahead of the rest of us, and the new bodies that we are all given in heaven look more like his does here on earth.

Shh… it’s a secret

When my husband and I decided to adopt a baby with Down syndrome, we didn’t tell a lot of people. I wasn’t sure about the reaction that we would get and didn’t want to have to explain our personal reasons to everyone that we talked to about our adoption plans. Frankly, I was afraid that people would try to talk me out of it. But, it turns out that when we finally shared our intentions, people were excited for us. My husband’s co-workers were even hoping that we would decide to do it after he brought the possibility to them and asked them to be praying as we made the decision. The one thing that people kept saying was, “You will be so happy. They are so sweet and happy all the time!”

I tried to not listen to that too much. I don’t like stereotypes and figured that this one could not be true. After all, no one is happy all the time. It would be crazy to expect that. I was right. A tired and hungry baby is not happy no matter what his chromosomal make-up is! But I was also wrong about a lot of things. My original plan was that we would treat our baby with Down syndrome the same as our other children and he would grow up the same way. Sure, he may take a longer time to learn things, but really, what will be that different?

Will chose to make his grand entrance into this world with a whole host of problems having nothing to do with Down syndrome and some that were a result of it. His medical needs were much more than we bargained for and I quickly realized that no amount of love was going to just “get him through” things. We have a lot of work on our hands. With trips to the hospital an hour away, sometimes upward of three times per week, plus therapy, blood work, oh yeah and three other kids in the house, life went a bit nuts on us rather quickly.

I can’t say that adoption has been a 100% blessing in every area of our life, just like I can’t say that Will is happy all the time. But here’s the thing, our lives have become exponentially better with Will in our family. I mean that very seriously, not in a sweet “new baby high” kind of way. The new baby high wore off fast for this mama. It is hard to feel a high after weeks of no sleep and while running from floor to floor at the children’s hospital because you have been there so many times you can’t remember which specialist you are supposed to see but you are definitely late for an appointment somewhere.

I’m talking about a change in us as a family, as individuals and as believers in Christ. Through all of Will’s medical needs, some of which are ongoing, God is teaching me a peace that I would never have understood in any other circumstance. I am learning a level of trust in Him that I would have never thought possible and a perfect dependence on Him and His will for my life. As a family, we pray together for our health, for God’s protection and for William. Our other kids are learning right away that God is the provider of all that we need.

Some other unexpected joys that have come from Will joining our family were a surprise to me as well. One being that other parents of children with Down syndrome know the secret as well. It is a beautiful thing to meet another family with Down syndrome in public and smile at them, knowing that their smiles are saying, “Yes! We get it! Look how amazing our kids are!” I have made some great friends who I would never have known if it wasn’t for the fact that our families have Down syndrome in common.

The latest statistic just came out on abortion of babies with Down syndrome in the US. The number is up to 97%. This means that only 3% of babies diagnosed with Down syndrome prenatally are given the chance at life. I can’t help but think of the passage in the Bible that says,

For you created my inmost being;
    you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

                                                                                  Psalm 139:13-16

When I was made in the secret place… I wonder how this world would look if we weren’t given the opportunity to gaze into the secret place and see what God is waiting to reveal to us. What if we couldn’t see Down syndrome before the baby was born? Maybe more hopeful waiting adoptive families would have a chance to meet the little one meant just for them. Maybe birth families who are so scared of a diagnosis would get a chance to be in on my secret. But since we do have the ability to spy on the secret place, let me tell you the secret…

Down syndrome is such a blessing! Even with all of the fears, doubts and troubles that we experience, I would not take away Will’s extra chromosome for the world. It is not something wrong with him, it is how he was knit together and he is fearfully and wonderfully made! I know now that life will probably not be the same for him as it is for my other kids no matter how much I love him or how hard I work at it. But you know what? I am no longer afraid of that because when I look into his beautiful almond-shaped eyes I see the face of a child created in the image of God and that fact alone makes him worth just as much as anyone else.

I wish so much that I had an opportunity to tell pregnant moms who have just been given a Down syndrome diagnosis that it will be okay. It is scary, it is hard, you will have moments where you don’t know if you are a strong enough person for the job, but it is so worth it. All of us who are lucky enough to have a family member with Down syndrome already know the truly important secret. Not the one about your child’s diagnosis, but the one about how much better your life will be once that child is a part of it. Not the one that says, “God gives the most challenges to the strongest people,” but the one declaring, “Step out in faith that this is meant to be and God will take your fear and make you stronger than you could ever imagine.” The secret that takes our sorrows in knowing that our child may not live up to society’s standard of success and replaces them with a person who loves without hesitation, lives a life of authenticity and teaches us what success in life really means.

Encourage families with a new diagnosis. Pray for these unborn little ones. And most importantly, don’t let it remain a secret.