This Could Be Hard

This is the Bedridden Project. I'm talking about what life was like for our son Evan and other children like him before he was adopted from a laying down room, and how awesome his life is now. I also talk about waiting children like Evan whose lives would be so much better in a family.

_____

This could be hard. I will say that front and center. This can be hard in so many ways. I'm talking about meeting your child in country for the first time, and deciding to say yes.

You are going to have people tell you not to do this. They will tell you to think of yourself, to think of your other kids, to think of the kids you could adopt instead.

During our adoption of Evan a lot of people told us not to adopt him. In the countries where these children are living, even the people who support adoption and special needs adoption often don't understand adopting kids from bedridden rooms. We had people say we were brave and crazy. We had people suggest adopting other more capable children instead.

There was a very long delay finding Evan's file at our initial appointment to get his referral. In fact, at first they tried to give us the file of a child our friends adopted from the same place! He is an older boy with Down syndrome. He is an awesome kid and I think the world of him, but he certainly wasn't our Evan! Other families have found that codes have been changed in files making younger children ineligible for adoption when they should have been available. In this country younger children must have a very specific diagnosis in their file in order to be adopted by a foreign family. In other countries other things happen. Some countries and orphanages never even list children with more severe needs because they don't see them as adoptable.

Evan's referral photos

Then you will get to the orphanage. Often the orphanage staff, the director, the regional person responsible for adoptions, and even your facilitator may encourage you to pick a different child. "This child will never get better. This child's needs are too severe. The adoption might not be approved. There is nothing you can do for this child."

I don't think these things are typically said out of malice. I think that it is an example of the underlying attitudes that ensure kids end up in these rooms to begin with. People really do believe it is a waste for a family to bring home a child with severe needs when there are other children with more mild needs waiting. They feel the others would benefit more and are also waiting for families, and there aren't enough families for all of the children to be adopted.

People really do believe that these kids can't get better. They haven't seen them get better. It is a vicious cycle where the children are never given a chance because they've never "proven" themselves. But how can they show what they are capable of when they weren't given a chance to in the first place?

Again, children with milder needs typically come first in their minds even when people do believe in better treatment for kids with special needs. Money is typically used up long before it can trickle down to kids in bedridden rooms. Foster care, group homes, experimental schools including kids with special needs, therapies, across the board. There is simply never enough to go around, and in a situation where "typical" kids aren't even getting what they need it is hard to convince people that these children also deserve more. Frankly, the same things can sometimes be heard in America as well, but at least people with disabilities have legal guarantees of fair treatment.

It is also likely that people involved want to be sure you are aware that you are not adopting a typical child so that you don't come back later and say you didn't realize. Again, for a lot of people it is far outside their expectations for someone to want to adopt a child with severe needs. They can't understand why someone would do that intentionally, so they want to make sure you know what you are getting yourself into. Sometimes they want to save you from yourself. It's often done with what people believe are good intentions, but it's not good for the child people might be convinced to leave behind.

So now you are going into your first meeting with your child with all of these people telling you to turn around and run. And if you aren't, that is something to be incredibly thankful for! It is a gift to both you and the child for you to be supported like that going into your adoption! Now you are going to meet your child with all of those thoughts swirling in your head.

First meetings are emotional and overwhelming for parents, but they are just as much so for the kids. For kids in bedridden rooms in particular, this can be an enormous shock. These are kids who might never leave their cribs. Being picked up and taken out of that familiar space can be terrifying. Human touch can be rare, and likely rough or painful when it does occur.

This crib was Evan's entire world every day. How scared he was to leave it.

Evan was plucked out of his crib and thrust into my husband's arms. He wailed and screamed in fear. He was never upright. He was never held. He was never out of his crib. What was he going to expect? What was going through his head? His muscles were so tight then that I'm sure it was also physically painful in addition to being so frightening for him.

He is not the same child now as he was then. I carried him dancing around the house last night. He loved being bounced and swung and held, my same child who screamed in terror at being lifted out of his crib. He has "gotten better" in ways that no one in his country ever believed he could. And you know what? Even if he hadn't, his life would still be worth saving. He still deserved the life he has now.

Medication. Sedation. This is common in general, but especially in kids who are in bedridden rooms. Sometimes kids are suspected to have epilepsy and are given medications to control seizures which have the side effect of sedating them. It is common for very frail, tiny children to be given doses of medication which would sedate adults. Sometimes kids are medicated because it is believed to help them sleep better or be necessary for medical conditions. Sometimes it is for convenience or because children get into mischief or they stim loudly or any number of reasons. The takeaway from this is that you may be meeting a child who is heavily sedated during your first visit or who is often heavily sedated.

Kids might not be able to stay awake. They might be unresponsive or minimally responsive. They may have unusual reactions to stimuli. Glassy eyes and blank stares. Sometimes this is also from the stress of something as unusual as a long period of direct interaction. Kids can shut down because that is also overwhelming compared to their typical routine. But the possibility and likelihood of medication is something to remember.

Evan could barely lift his head on many of the visits. (Can you see Daisy behind him?)

And now you need to decide. You have to continue forward with this adoption, or turn around and choose another child, or go home without a child. This IS hard. This is not a light and easy decision.  I have known so, so many families who struggled with this decision. That's why I am talking about it here and now. MOST families find this a hard decision. That is normal. It doesn't mean you can't do this. It doesn't mean you should say no. All of these people are telling you to say no, and you are meeting a child who is likely to be very frightened or unresponsive, and you need to decide if you can do this very hard thing and say yes. This was the hardest part of our adoption of Evan. We said yes. It was 100% the right decision for us and for Evan.

Sometimes people say no, for a variety of reasons. Maybe they don't think they can adopt this child along with another child. Maybe their homestudy doesn't include some of the child's needs. Maybe they feel like these particular needs are too much for them. That no can be the right decision for some families. For us it wasn't. Bringing Evan home was right. That was Evan and that was our family, not every child and every family.

This is such a HUGE decision that is literally life altering for both the child and the parent. It is so important to know about this and think about it ahead of time. It is important to know how many people initially struggle making this decision, because it can be a hard thing to share publicly. People are excited to see updates about how you have met your child for the first time. It is hard to say that you might be having second thoughts with all of those people watching, even when you do go on to say yes. It is very common to have those questions though.

With all of the things said about Evan, we could have said no. Some people would have told us that we made the right decision. They would have said that was the smart, safe thing to do. We didn't say no. We said yes. It was hard, but it got easier. The more visits Evan had, the more comfortable he became. Since he has come home he has changed before our eyes. He is not the same scared, frail little boy. But even if he was, I would still be glad we had brought him home. I know what his life was like there. I know what it is like now. He is safe and he is loved. That is worth it, no matter how much or how little progress a child might make when they come home.

Evan is rocking out these days!

_______

Now for the waiting kids. I'm going to post again about some children I have mentioned before. These are the kids who are with my Lee right now. They continue to deteriorate. I am hoping for some miracle where the orphanage will allow charities to step in and help fill the gap between what the kids can be given by the state and what they truly need. In the meantime, the kids are suffering. I can guarantee that parents adopting these kids are going to hear the same thing about how hopeless these kids are. THEY ARE NOT HOPELESS. Hope is the only thing they have left.

This sweet girl cannot be adopted. She was one of the healthiest kids in Evan's room. I barely recognize her now. These photos are in the old orphanage and the new one. This is the same child. The old orphanage was not a great place, but charities could provide extra food and extra care. It was keeping kids alive.

Leilani needs a family urgently. A family already in process who could add her to their adoption is her best chance to make it out in time. She is growing hair on her arms as part of her body's response to starvation.

Quinn is a very sweet and very responsive kid. He would thrive in a family. He used to make noises and try to talk. I don't know if he still does, but that potential is there. This is a kid who could do amazing things in a family.

This boy is not listed on Reece's Rainbow, but he can be adopted. His name is V and he was born in 2003. He absolutely lights up in response to people, but he has been spending more and more time sleeping here. He is frail.

My Lee is fading. His last photo showed his arms so wiry thin I don't know how he is holding on. His arms and body are hidden in his most recent photo. But the other kids' photos tell the story. He's also laying still. He usually is trying to sit up and lifting his head to get attention when there are people in the room. We are so close. I hope we can get there in time. We are not yet fully funded, if you would like to help us get him home by donating HERE or HERE.

Denzel and Phoenix are also fading, but they also have a family coming to rescue them. They are only waiting on travel dates right now. You can donate to them HERE.

Zoey/Becky is one of the tube-fed kids, who are all very urgent. She may be sedated and less responsive at times, but she is capable of so much more than they realize. She is aware of what is going on around her.

Posey. This was the one bright spot out of all of these updates. We get to see Posey smile. She is smiling here, but she still needs a family so badly. She is so young, and this is such a hard place for bedridden kids.

The following children are in different orphanages. They also need families.

Christian is a little boy who is currently heavily medicated to treat seizures. He is beautiful. I think he is still in a baby house, but I can't see him surviving at all once he is transferred. He is old enough to be transferred at any time.

Starr is a precious little girl. She is also heavily medicated right now. She has had her referral pulled many times, but no families have been able to take her home. Some have had other kids whose needs required too much attention to add on another child. In the past she was smiling and responsive. She was unable to hold up her head or open her eyes when the most recent family met her. She also needs a family desperately. Our family adopts older kids, but we would make an exception for her!

Janie is a little girl who has been listed for many years. She has been transferred out of the baby house into an orphanage where many children look just as bad as the ones at the orphanage we are adopting Lee from. I don't know of any adoptions from her orphanage, but she and the other children there need out.

____

Please share this post and share these kids. I don't think people realize the full extent of how bad the bedridden wards and laying down rooms can be. Our family has been there before and is going back. We have seen it firsthand. And sometimes I think we can't even comprehend it. Please help these kids get home to families, and hope with us for a change that will help the kids who can't be adopted.