Category: Trisomy 21

Today I looked in my planner and saw the following notation:  !!due date!!

Guess we’re past that.  🙂

But it’s the perfect day to share about our new baby’s bris and name!

On Sunday afternoon we had his bris at a local shul, and were delighted by how many people made time to join us.  It was a diverse crowd, with people identifying as secular, traditional, Torani and charedi all attending.  We had Israelis and Americans, those who were living here for many years and those who were just visiting for a short time.

There were so many nice things about the people who came that I’m afraid to share about some and not others in the fear someone will feel I appreciated the presence of some people more than others – and every single person literally added to our simcha.  But I’ll say that it was especially wonderful to have some friends from Baltimore who were able to be there with us – there’s nothing like old friends!  Dd15’s best friend came with her brother, who is a very good friend of ds13.  And another family we’re friendly with came as well, with three of their children (all of whom our children were friendly with); all of these people happened to be visiting Israel now.  So our kids also had the chance to share the simcha with people they had known for a long time (and then three of their friends slept over so they could have more time together – so, so nice!).

Until now, the kids have been calling the baby ‘Squiggles’, and three weeks was a long time for them to wait for his real name!  After the name was given, a number of people asked me if he was named after anyone – no, he wasn’t.  He was given a name that we felt was a reflection of his soul.

In Jewish tradition, it’s believed that after a baby is born, the parents are given a measure of divine inspiration to choose a name that fits the soul purpose of the child.  For every child, dh and I have discussed possible names during pregnancy, and every single time, the names we thought we liked and would want to use were put to the side for names that we thought of after the baby was born.  So we learned the futility of trying to plan ahead!

However, this baby was different.  When I was pregnant, we were talking about names, and dh made this suggestion.  As soon as he suggested this name (because it ties in well with the Three Weeks, this time period in the Jewish calendar), I knew it was the right name.   So much so that I did something I’ve never done before, I called’ the baby this name when I had conversations with him in my head and then used this name when speaking to him soon after he was born. (I’ve never used a name until the baby was officially named.)  After his birth when we learned that he had Trisomy 21, I said to my husband, “Now we can see what a perfect name it is for him!”

So what is this marvelous name for our marvelous baby? 🙂  The baby’s name is Yirmiyahu (in English, Jeremiah or Jeremy), and it means ‘G-d will uplift’.  We have seen so much blessing in our lives, especially in the last eleven months since moving to Israel, even in the face of many challenges.  Now we were sent our new baby boy, and this is a special gift on top of all the other gifts.  We feel G-d has uplifted us with his birth and that’s why his name is so perfect for him!

Avivah

Below is the second piece that a friend sent me after I shared with her that we were awaiting results of genetic testing to see if our baby had Trisomy 21.  I had never read this before, and it brought tears to my eyes when I did.

The Special Mother 

by Erma Bombeck 

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Celia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally he passes a name to an angel and smiles. “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of it’s own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”
Avivah

When I first got the news that our baby might have Trisomy 21 (Down syndrome), I shared this with just a couple of friends.

One of them sent me two beautiful pieces, both of which I’ll share with you (one today, one in a day or two).  The  first was this one, which I had actually read years ago.  I think this applies to so many areas in life; we think we know what we want and that’s what is best for us.  And then we have to resolve within ourselves the difference between what we wanted and what we got.

WELCOME TO HOLLAND

By Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I shared in my last post how several medical professionals all commented on my positive response to the possibility of our baby having Trisomy 21.

I value emotional honesty and I’ve asked myself a number of times in the last couple of weeks if I’m suppressing my true emotions about our baby’s diagnosis.  After all, it seems most people cry and are upset about this before moving on to happiness or even acceptance – why didn’t I cry?  Why am I not upset?  It’s not because I’m on a high spiritual level, that’s for sure.  But it’s also not because I’m in denial or shutting down emotionally.  I think that Hashem (G-d) prepared me for this emotionally when I was still pregnant and that’s why I was able to so quickly come to terms with our baby having Down syndrome.

When the doctor told me that first night that they saw signs that made them suspect Down syndrome, I suddenly remembered the strong feeling I had repeatedly had in the middle of my pregnancy – that our baby would have Down syndrome.  I kept pushing this thought to the side as being illogical and eventually forgot about it until that moment.  As I thought about it, I also remembered the reading online I had done at that point – I don’t know what made me read about Down syndrome because this was certainly not relevant to my life at the time and I don’t make time to read about things that aren’t relevant or of interest to me; maybe you could say it was intuition.

Whatever you call it, I didn’t just passively follow a link that happened to be about Down syndrome.  I actively did a google search – “inspiration about Down syndrome” – searching for something to allay the strong inner feeling I had.  I did a lot of reading – I even read an e-book about how to homeschool a child with Down syndrome! – and shared with a couple of my children some of the pictures on the websites that I was reading.  It was after that I did all of this reading that I stopped having thoughts about the baby having Down syndrome and totally forgot about my concerns until it came flooding back to me right after the doctor told us.  And when she did speak to us, the feelings of appreciation and joy for their special children that parents expressed was all that I thought of.

I also remembered two key statements.  One was from a friend (whose nine year old has DS) who told me several years ago, “If there’s something that’s got to be wrong, Down syndrome is the absolute best thing you can have.”  She went on to tell me, “Down syndrome is just not that big a deal.”

The other statement was from a blog reader in my comments section –   “At his upsher my husband said that he cried when he realized that he had down syndrome…..and that is his only regret!!!! He said they should have been tears of joy!!!”  I shared this with dh several months ago when it was posted, and then again that night.  The perspectives of all of these parents gave us something to hold on to, a path to walk down without feeling afraid of the unknown.

When I had conversations in my head with my baby while pregnant (I don’t talk out loud, though many women do), I had two phrases I would always ‘say’ to him.  I would tell him, “We love and accept you just as you are”, and “Don’t worry, it’s a good world.”  The second phrase was my personal response to a true story I read many years ago by a mother who during labor that stalled ‘heard’ a message from her baby, saying she was afraid to be born because she had Down syndrome.  And the mother basically reassured her baby that they would love her, her labor restarted, and the baby was indeed born with Down syndrome.  Why was this the story that I repeatedly thought of when I was pregnant?  I didn’t know then, but I had a very strong feeling of needing to reassure our baby that he was wanted and that this world would be a safe place for him.  When he was born it became obvious to me why those were the messages that he needed to ‘hear’ throughout pregnancy.

Also, for the past few months I’ve been giving classes on the weekly Torah portion.  And as much as I’ve been thanked for this, I can say with certainty that it’s been of more value to me than anyone attending.  That’s because each and every week, I spend a significant amount of time learning and reading, looking for messages that resonate with me that I want to share with others of practical day to day wisdom from our Torah.  Often, this message has been connected to how everything that happens to us is for our good and for our growth, even when it doesn’t seem that way at all – sometimes I wonder if I’m being too redundant about sharing thoughts on this! And when you think about something so much, and then share about it with others, it makes an impression on you.

Overall my feeling is one of being very fortunate and blessed!  This baby is our tenth child and our seventh son.  Both the numbers ten and seven have the spiritual qualities of completion in Judaism, and I feel certain that this baby is bringing some kind of spiritual completion to our family.

Avivah

This morning dh and I traveled to Nahariya to meet with a genetic specialist to get results of testing that was done when the baby was in the hospital.  After 2.5 weeks, we finally have some definite answers!

When our baby was about three hours old, a doctor told dh that he had some features that are common to babies with Trisomy 21 ( also known as Down syndrome), but, she added, sometimes within a few hours these features change.  When dh told me that, I paused for about half a minute to think about that, and then said, “That doesn’t make any sense.  How can features change, and what features is she talking about?”

Dh didn’t know, and when I saw the doctor for the first time an hour or so later, after she finished telling us about all the medical issues the baby was facing I asked her what features she was commenting on.  After she told me, I said, “You’re pretty sure it’s Down syndrome, aren’t you?”  “Yes”,  she nodded, as she looked back at me worriedly.  Okay, I thought to myself, so that’s it.

I took the baby for a nursing session and told dh what she said.  We both felt that Hashem (G-d) was giving us a vote of confidence, as if to say, “You’ve dealt with all the challenges I’ve sent you so well that now I know you can be trusted to raise this special gift.”   It’s hard for me to describe this without sounding woo-woo, but I had a sense of Hashem shining a loving light all over dh and me and our baby.

The next morning, a nurse came in to ask me how I was doing and talk to me; she was sent because they want to be emotionally supportive of parents who are getting news like this.  It turns out she was an English speaker and I enjoyed chatting with her.  She told me what an amazing attitude I have, and that she’s not worried about me emotionally – she even told me that I’m going to add a lot to the support community for DS here in Israel!  (I thought that was highly optimistic of her being that after the first night in the hospital I was seriously sleep deprived.)

After her a social worker came in to talk to me, and within just a minute or two of meeting me said, “I don’t know why, but I have a sense that you’ve already accepted this and feel peace about the situation.”  And I told her she was right, and then shared with her my thoughts that our newest baby was purely a blessing and nothing else.  Our baby is our baby and he is precious to us no matter what; hearing about the likelihood of Down syndrome didn’t change our feelings toward him at all (except to make us feel even more loving and protective of him).

Later on I would speak with doctors, mostly neonatologoists – though at one meeting I met with the head neonatologist, the pediatric hematologist, and the geneticist all at once.  (Having these medical conversations in Hebrew was definitely a linguistic stretch!)  Each of them told me all the specifics about the baby’s situation that they were each responsible for; the geneticist was last.  And she said to me, “I don’t know how – is it faith? – but you seem very accepting about this.”  But we still didn’t have a firm diagnosis, and until the testing was done, we didn’t discuss the possibility of T21 with any but a very few close friends.

Unfortunately, the first testing results failed and had to be done from the beginning, which meant that we didn’t get a diagnosis until today.  Waiting was really the hardest thing about this situation, since our inclination was to be open with whoever we spoke to about the baby and we couldn’t do that.

Dh and I left the house at 5:40 am to make our bus connections to get to our 8 am appointment at the genetic institute – they won’t give results over the phone – and it was oddly anticlimactic once we got there.  Basically the geneticist said, “Just as you already thought, it’s Down syndrome.”  Then she showed us a picture of the typical chromosome arrangement, then a chart that showed the T21 chromosome arrangement, then asked if we had any questions.  (I thought to myself, “This is what I woke up at 4 am for???)  When scheduling appointments they leave time for counseling the parents but we really didn’t need any help in coming to terms with this, so that’s why our appointment was so brief!

We had to see the pediatric hematologist while there, as well as the social worker, and dh commented when we finally left the hospital that it seemed as if all the staff we encountered was expecting to catch us emotionally as we fell apart -they all had furrowed brows and concerned looks as they asked us what we had heard from genetics that morning, and then asked us how we were doing when we told them the results showed T21.  (I told him that’s how it was the entire time I was at the hospital -he wasn’t there after the first night.)

I’m really glad to have the official diagnosis and no longer have ambiguity about what we’re dealing with.  Not only that, today we got the go ahead from the hematologist for the bris, which will take place on Sunday afternoon.  We feel so blessed with all the good that is overflowing in our lives!

Avivah