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.

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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.