Tag Archives: down syndrome adoption

A Story of Hope and Love

Someone shared this wonderful story with me of an adoptive father of 12 children, most of whom have Trisomy 21.  What in the world compelled this couple to travel across the world and adopt these abandoned children from various countries?

If I had read this story before I had a child with Trisomy 21 I simply couldn’t have related to it at all.  I had no part of me that could understand people who did things like that, and could only assume they were on a completely different elevated plane from myself.  I mean, why make your life harder?

 

Rafael, 9 months

Rafael, 9 months

I have a really different perspective now that we have our two treasures with T21.  Since we brought Rafael home I know that people sometimes put me on that elevated plane that I used to put others on, but from where I’m standing, it looks completely different.  It isn’t about picking up a heavy burden and suffering; the reality is so, so much love and blessing and gratitude and faith for all of our beautiful children.

Here’s the story I’m referring to – take a couple of minutes now to go and read it!  A Story of Hope and Love

I can’t even try to guess about seemingly negative things like why the author’s sister suffered as she did, but everyone can clearly see that it led to something very beautiful all these years later – his huge family of children with special needs – as a result of her being in his life.

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Ds8 told me a few days ago, “I’m glad that Rafael has Down syndrome.  Because if he didn’t, he wouldn’t be part of our family.”  I’ve never articulated it in that way to our children, but he’s right – for us Down syndrome was the positive ‘hook’ that brought Rafael into our family!

Avivah

o and a with rafael, 8 months

A couple on a mission to convince parents to keep their newborns with Down syndrome

Our social worker called tonight to remind me about a request she had made of me at her last visit.  The social worker who did the placement for Rafael with our family is moving on to another position after many years doing this work.  We were asked to send a picture and note for the placement social worker; they will be making a book from as many children that she placed as possible.

It was late when I remembered about this but luckily dh hadn’t yet gone to sleep for the night.  Rafael was just waking up so even though the timing wasn’t ideal since he was drowsy, we managed to get a few quick pics.  Rafael (now 8 months old) is such a good sport – it doesn’t matter how tired he is or if he’s just opening his eyes from a nap – if someone he loves is giving him attention, he’s a happy baby!

o and a with rafael, 8 months

o and a with rafael, 8 months 2

o and a with rafael, 8 months 3

o and a with rafael, 8 months 4

o and a with rafael, 8 months 5

o and a with rafael, 8 months 6

Deliciousness!!

I haven’t really written much about our little treasure.  I don’t know if you could find many babies who get as much love and attention as this cutie – our kids don’t get tired of telling me how much cuter he’s gotten since the day before- and he returns their love in full with his heartfelt smiles and laughter.

Two blog readers sent me the following clip of a couple who adopted a baby girl with Trisomy 21 and have made it their mission to convince parents considering giving up babies with T21 to keep them.  I was in touch with the husband both with Baby M last September and with Rafael seven months ago. With Baby M, he was the direct liason with her birth parents; with Rafael, to access some of his connections to help cut through the legal paperwork that Rafael had been caught in.

The clip is in Hebrew, but for those of you who understand this, it’s very moving.  I watched it several times and felt choked up each time, especially when the woman describes going to the hospital for this abandoned baby they had heard about who was going to be having major surgery. With no legal standing, nothing but a desire to help this baby who had no one, she told the staff she was the mother, and then as soon as she held the baby told her, “Tamar, Tamar, Mommy is here, and and Mommy promises that she’s never going to leave you. ”

Unfortunately I couldn’t figure out how to link the video directly, so you’ll have to click this link and then click on the video.  Moving video of couple that adopted baby with T21

The reality remains that too many babies with Down syndrome are given up every year.  Not because the parents aren’t capable of raising them but because of advice or suggestions they are given, the fears they have, the stigmas they may feel…. Accurate information goes a long way in encouraging parents and dispelling the fears that lead to giving babies up.

After Yirmi was born five years ago, I anticipated that I would go to hospitals and speak to parents who had gotten the diagnosis of T21, particularly those who were considering giving up their babies. Despite my willingness and even signing up to be on the roster of parents called in this situation, I was never contacted.  Though I’ve spoken to parents of infants and children with T21 and supported them in different ways, reaching out to parents in the hospital obviously wasn’t meant to be my focus.  It’s touching to see the passion and commitment of this couple for whom this is their mission.

Avivah

Baby R’s homecoming! (pics)

Exactly two weeks after our official meeting with his birth parents, Baby R has officially joined our family!

Not only was the timing of this placement really fast, it is also amazing that just one week after we received our legal authorization to foster, we were contacted about Baby R.  Usually families wait for months.

When we were told about Baby R, we didn’t know if he had been named yet.  Ds14 told my husband that if we would be able to name him, he had a particular name in mind that he thought would be perfect.

A week and a half later when I first spoke with his birth mother I asked if the baby had a name.  She told me the name was Rafael.  When I told ds14 the name, he told me that this was the name he had thought of! Ds14 told me then, ‘It just feels like this baby is meant to be part of our family.’  Indeed we all had that feeling.  And the name fits perfectly with the kind of names we choose for our kids.  (Not to mention it’s not a name we’ve used yet for our other seven boys!)

Yesterday the placement took place and honestly I found it emotionally extremely draining.  Everyone involved was great – it’s just not the easiest experience.

I called from the taxi when we were a minute from home and the seven children who were at home all ran down and were waiting to greet us when we opened the doors to get out.  Such excitement!  (I’m sure the taxi driver was wondering what the big deal was.  :))

Everyone wanted a turn holding the baby, and to be fair we went from youngest to oldest. I cautioned everyone to stay calm and quiet because going to a home from the hospital is a big transition, and we didn’t want to overwhelm him.

Ds4 with Rafael

Ds4 with Rafael

Ds7 with Rafael

Ds7 with Rafael

Ds9 with Rafael

Ds9 with Rafael

Ds10 with Rafael

Ds10 with Rafael

Ds14 with Rafael

Ds14 with Rafael

Ds18 with Rafael

Ds18 with Rafael

Happy to watch even if not able to hold him!

Happy to watch even if not able to hold him!

Dd20 was at work and didn’t get home until later, and somehow even though dd16 spent hours holding him, we don’t have any pictures of her!

Dd22 with Rafael

Dd22 with Rafael

pic - baby hand

Ds23 usually comes home only every few weeks for Shabbos but made a special trip home for the night to meet Rafael.

Ds23 with ds4 and Rafael

Ds23 with ds4 and Rafael

I was up every couple of hours in the night since his days and nights are reversed, but that’s okay.  We’ll get that straightened out within a week.

I am so grateful for the generous nursing mothers who shared their milk with me so we would have it here for Rafael when he arrived.  His immune system and digestive system are already benefiting!  I’ll be needing lots more as time goes on but right now we have enough for at least the next couple of weeks.  (If you are a healthy nursing mother of a baby under 6 months who would like to help out with this and live in this area or have a way to get milk to us, please be in touch with me!)

It’s funny how everything happened so quickly but it feels so right for him to be with us. It’s really, really wonderful and I feel very blessed.

Avivah

A and R cropped

Meeting Baby R for the first time!

Ds18 came home from high school with a nasty virus a week ago. He’s still home, and so is the virus – that has generously been shared with just about everyone else in our family!

This has been a rough week for everyone and I spent three days in bed sick, which isn’t typical for a busy mom even if feeling under the weather.  But I couldn’t do anything else – I was completely knocked out.

I pumped vitamin C and fluids, listened to healing meditations and slept non stop for many hours because I didn’t want to miss our scheduled date to meet Baby R.  And I was there – I was weak, I couldn’t speak very loudly and my brain felt like there was a layer of fuzz overlaying it, but I was there!

Usually the visit to the hospital takes place with both sets of parents and a social worker to facilitate.  I guess we did so well handling the initial meeting privately that they trusted us to handle this one on our own!  The reason there wasn’t a social worker wasn’t because it was ideal – it was done in order to accommodate the differing schedules of all involved – there was no possibility of all of us being available on the same date otherwise.  This was the issue that would have kept the placement from happening with our family, but they had told us they would work with us and they really did.

I very much like and respect the birth parents, and I know they feel that way about us.  But that didn’t make this an easy visit.  Not for us and not for them.

What do you do, when shown the baby that you hope and anticipate will soon be your son, and told by the staff you can hold him….when the parents who gave birth to him are right there watching?  Do you pick him up with obvious delight, do you croon to him and tell him how happy you are he will be joining your family soon?  Do you hold him close to your heart and feel  emotion and connection with this tiny person?

No.  I couldn’t.  Not with them there.

So I asked my husband to pick him up first. :)

The parents sat down with us, and I didn’t feel right to ask them to give us privacy.  It didn’t feel kind.  After a few minutes, my husband passed the baby to me.

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I felt like an interloper stealing someone’s child.  What do you say?  I told her he’s beautiful.  He really is.  What else could I say?  “Are you sure you don’t want to keep him??  Are you going to change your mind and take him back later on?

After a bit longer they excused themselves and said they’d give us some privacy.  I really appreciated their sensitivity.  It can’t have been easy for them to see us with the baby.  And I was so happy to have the chance to let go of the emotional barrier I put in place and instead feel connected to him as his soon-to-be mother.

IMG_20170217_100957The staff members going by all seemed to have some sense of who we were since they gave us very warm smiles.  A bat sherut (someone doing her national service at the hospital) who passed by smiled at us widely, then the second or third time she passed by (we were sitting with him for about an hour next to a corridor) told me she bought the outfit he was wearing. She then burst out, “Oh, I feel so calm now that I see you with him!  I’ve been so worried what kind of family will take him.  Is there any chance that you’ll take him?”

When I told him we were definitely taking him and the transfer was scheduled for three days later, she was so so excited.  She showed me all the pictures she’s taken of him since he was born and asked I wanted them – I definitely did!  I was so happy to see how loved he was.

I also met a woman who has been been coming twice a week for the last two months, three hours each day.  She’s part of a volunteer organization that holds babies in hospitals who don’t have someone to hold them.  (Other volunteers have come on the remaining days.)  She told me she takes him outside if the weather permits and also puts him skin to skin since that’s so important for babies.  Such a warm, caring woman.

In addition, a family member of the birth parents who lives in the area visited daily until this past week, and his parents came weekly despite the distance.

We met with the doctor, who told us Baby R is something of a celebrity at the hospital and the staff is crazy over him.  I really saw that.  So dramatically different than the situation with Baby M who was left in a mother baby convalescent rest home and was in such an emotionally sterile environment.  It was really nice to see how Israeli hospitals – specifically this hospital, Laniado Hospital in Netanya – is focused on taking care of the child’s needs in non-ideal situations.

After getting home, I called the social worker and left a message letting her know how it went.  She returned my call, and exclaimed, “You did it!! You really did it!!”  She told me the hospital visit is a very hard one even with a social worker there to manage it, and she’s sure that we handled it well.

We sent the pictures to the kids while we were still at the hospital, knowing they wouldn’t want to wait until we got home.  They are so, so excited!  He is adorable and we can’t wait to welcome him home.

So after all the ups and downs, it looks like Baby R is really going to join the Werner family!  The authorization that was holding everything up suddenly was processed a week ahead of the scheduled hearing date, there’s a date for the placement, and the doctors have scheduled his release so he’ll be ready for the meeting with the social workers.

But there’s a part of me that doesn’t want to push ‘publish’ on this post, because of that tiny voice whispering, “What if they change their mind?  What if something else unexpected happens?”  I’ve had that feeling at other points when sharing this experience here, and as I decided then, will continue to share the journey whatever it brings.

I hope my next post will be about his homecoming!

Avivah

 

What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.

Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is  available for adoption to a religious Jewish family in the US.

Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.

I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.

What would I tell a new parent about raising a child with Down syndrome?

I know, it can feel overwhelming when you get the news.  Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people.  And now you’re the ‘other’ person.  Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for.  All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.

But I want to share with you a much more accurate perspective.  It’s not sad.  It’s not bad.  It just is.  Your child has been born with a medical difference, and that feels significant.

But it’s not nearly as significant as you might think.  In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.

Here is what I think the most important things are to know in these early days:

  • Raising a child with T21 is pretty much the same as raising any other child.
  • He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be.  No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
  • Trust his potential and support his process in the way that is right for who he is, not who you think he should be.  He doesn’t have to prove himself.
  • Most importantly, just love him.  You are going to get so much love back.  One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.

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I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21.  I’d love to know what your reaction to this video is!

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When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different.  We presume that having differences is a bad thing.

It’s really not.

But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.

There are no mistakes in this world.  Your child isn’t a mistake.  His entrance into your family isn’t a mistake.  You were divinely chosen to receive this child.

Not because you’re spiritually better than anyone else and ‘can handle it’.  Not because you are worse than anyone and ‘he is your test’.

He is a child with unique gifts and abilities.  He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!

Avivah