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.

My Son was Dead, and is Alive Again

I remember equating our first time meeting William to how God must feel the first time we ask Him to come into our lives and make us new. The joy mixed with the grief of loving someone so much that you would do anything for them was tangible and it left me in awe of God and His plan for us. The first eight months of William’s life was pretty smooth sailing. We thought it was a bit difficult, but we had no idea what was coming.

When Will was diagnosed with his seizure disorder, my personal grief and depression was intense to say the least. William basically disappeared. We were left with a baby we didn’t know and memories and photos of the old Will that, although they should have been happy, increased my grief all the more. I was conflicted with the loss of my son coupled with the fact that I still had this stranger to care for. His care was so much harder, and I found myself slipping further and further away into my grief. At the time, I was so angry with God that I refused to talk to Him. I turned away. How could He love us and let us go through this? How could I love Him after He didn’t save my son?

William has been seizure free for two glorious months. This week, he began to roll over again and hold his own head up. His beautiful smile lights up our day. William is back. Just as God taught me about salvation when William was born, today He is teaching me about faith. About 18 months ago, I prayed that God would increase my faith no matter what it took, but I had no idea what that meant. I must be difficult to teach, because God had to take me through the deepest, darkest year of my life in order for me to learn to trust Him. I don’t believe for one minute that God makes bad things happen to us, but I do see that through the bad, He brings understanding and makes things new.
I have been pondering the story of the Prodigal Son for the last few weeks, equating it to losing who William was for a while and now getting him back from the brink. But something felt off. We didn’t actually lose him. We felt like it for a while, but William was always there. He was just too sick to reveal himself. Why did God keep bringing this story to the front of my mind?

I realized today that this wayward son story was mine, not William’s. When I asked God to increase my faith no matter what it took, He knew that I needed radical change in my life. The only way to increase my faith was to shatter it and to rebuild it from the ground up. I have been the prodigal child for the last four months. My anger with God was enough to make me turn my back on Him. But He was in relentless pursuit. As I grew angrier, more people told me that they were praying. As I tried to skip church on Sundays, my kids asked to go and I couldn’t say no. As William got better when the doctors said that he wouldn’t, God’s healing was the only answer that made sense.

As Will continues to get better and stronger every day, we are blessed and delighted by seeing his “firsts.” The first time he smiled, the first time he rolled over, the first time his beautiful almond-shaped eyes followed me across the room. The funny thing is, he did all of these things months ago. But God has been gracious to give them to us again. And after being told that they are unattainable, the second first time is even more amazing than the first first time. Does that even make sense? Not to me, but to God, absolutely! Seeing impossible healing right in front of you, in the most precious person in your life makes disbelief in God a ridiculous notion. Through God giving us this amazing time of healing in Will’s life, especially after all that we have been through, He proves Himself over and over.

It took a year of this special needs adoption journey, with all of its ups and downs to find my faith. I thought that after asking God to increase my faith, He had instead destroyed it completely. But looking back, He was there all along. I was the one who had left. The hellish months of worry and grief are over for now, but we don’t know if they are gone for good. What I do know however, is that if they come again, God is in the midst of them. Not only that, He is there now, preparing a way for us to make it through them if we must.

I am unshakable in my faith. I’ve seen so much proof that nothing can convince me otherwise. God granted my naïve yet sincere request to be changed, just not in the way that I expected or would have chosen. Will turns one next week. I don’t even know how to put into words how I feel about that. I have spent the last year trying to save his life in any way that I can, but he ended up saving mine. Thank you God that you give us what we need and not what we think we need. Hallelujah and amen.

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.

On Adoption

I had planned in my mind how magical it would be when we first met William. I watched videos of other adoptive parents meeting their children in the hospital for the first time, all smiles and tears. I had planned that we would bring the video camera and ask a nurse to film us when we first entered the room and saw him. Then we would share the video with family and friends and it would be as beautiful as the videos I saw and the way I imagined it to be. But William and God had other plans.

I found out that William was born because I happened to email his birth mom telling her that I was going to meet her at her next ultrasound. I got the response back, “Please come to the hospital. William is here.” I hadn’t heard from the social worker, I hadn’t packed a thing or planned, Scott was still in bed asleep because it was 6 in the morning for crying out loud! I called my Dad and he came to watch the kids as Scott and I scrambled to get dressed enough to go to the hospital. We drove the longest 45 minute drive of our lives and then finally reached the hospital.

We weren’t parents, we were visitors. We weren’t allowed to see William because his birth mom was the mother. So we had to go to her room first. We rode the elevator to the 9th floor and knocked on her door. She was awake in bed and told us all about the emergency birth, how she was feeling and how her family was doing. But my mind kept screaming, “Yes, but where is my baby? When do I get to see my baby?!” Finally, a nurse came to escort us to William’s room with the birth mom’s permission.

We rode down the elevator to the 8th floor and walked down the long corridor in a daze, blindly following the nurse. She then said, “Okay, here’s his room. It was nice to meet you,” and pointed us to a door and left. Scott and I held hands and walked in. We didn’t have the camera rolling, we hadn’t even remembered to bring it. I was in my jeans but still wearing my pajama shirt. Neither of us had brushed our teeth before we left.

When we walked in, the lights were off and all we could see was a technician doing a heart ultrasound on a little bundle of wrapped up cords and wires. Machines were whirring as O2 was being pumped into the bed. The iv monitor was beeping, as was the machine showing the oxygen levels, heart rate and respiratory rate of this person that I could not see. The technician greeted us and told us what he was doing. He finished up and wiped off his equipment. We asked the nurse how the baby was doing and she told us that she wasn’t allowed to tell us anything because we weren’t the baby’s parents or guardians yet. Then, someone else came in and whisked us away again to give us a tour of the NICU. I found myself once again screaming to myself, “I just want to see my baby!”

Finally, we went back to the room with our tour guide and as we entered she said, “Does he have a name yet?” I told her that his name was William and then I walked over to his bed to finally see him. The nurse said that we could touch him, so we reached out and touched his hands and his face. We weren’t able to hold him, he was too fragile. We didn’t know if he was going to make it or not, but suddenly, there he was. This tiny person that had been only an idea to us for so long was there. My baby was in front of me. And all of the sudden it hit me like a ton of bricks. Adoption hurts.

This person whom I had never met until now, whom I did not carry, whom I did not deliver was laying there helpless and all I could think was, “Oh God, I would die for this tiny baby.” Nothing about him was going right. He was too early, he was sick, the doctors were saying things like “cancer” and “kidney failure,” but it didn’t matter. This little person was mine and he was suddenly my world.

And in an instant God was revealed to me in a whole new way. How amazing must it be for God each time someone repents and asks His forgiveness and for Him to come into their life? It would be just like I felt. God must see this broken person with all of their issues, needs and with nothing to offer to the relationship and yet say, “I love you so much that I would do anything for you, even die for you just because you are mine.”

A few times I have heard my biological children referred to as my “real kids” and I think that when we hear about being adopted by God, our initial reaction is to think of adoption as a secondary or lesser type of relationship. But now I see things so differently. Adoption hurts. It is costly. I don’t take for granted that this little miracle in my arms is only here because his birth mom is going through the worst days of her life while grieving the loss of him (a totally different topic but also a new way that I look at God giving Jesus to die for us).

It is a struggle emotionally as we wait for prognosis and for birth parents to sign the final forms. It was and is a struggle physically as we drove every day or spent the night at the hospital an hour away and now as wake up every three hours to our alarm clock to feed William even though he is not hungry because of his kidney disease. It is a struggle mentally as I fight myself to not think too far into the future and worry about if he will have friends, if he will love life and if he will outlive me and not have anyone to take care of him when I am gone. Adoption hurts.

But adoption also heals. This tiny little baby who was given a 50/50 shot at living did live! Once we got home from the hospital, we found out that people all over the country were sharing his miraculous story and that he had already brought hope to so many. We saw in him our hopes and dreams being realized as we welcomed him home and our other kids squealed with excitement at the sight of their new brother. He had made it, he was and is fighting the good fight and Scott and I are somehow blessed enough to be the ones chosen to take care of him.

Adoption is not a second option, a lesser relationship. Adoption is the vigorous, painful and agonizing pursuit of our deepest desires. Knowing that God chose to adopt me, to seek me out, to love me in the middle of my mess and to ultimately die for me will never be a concept lost on me again. The adoption of my son has given me a beautiful glimpse of the adoption by my Father.