Today is Day 4 of 31 for 21, a blogging effort to promote awareness of T21. Click here for a list of lots of great blogs of those who are participating!
After mentioning yesterday how cute Yirmiyahu is, I realized I owe my readers some pictures!
Me and Yirmyahu today
Today dd17 was with some friends who all were going crazy over him (as usual) and she took the following pictures.
Yirmiyahu, 3 months oldWho is that looking at me?!
Yirmiyahu began smiling when he was ten weeks old, about three weeks ago. This is the first time we managed to catch his smile on camera. Dd thinks the angle is awkward and doesn’t show his true cuteness and she’s right, but I’m sharing it with you anyway.
This month is National Down Syndrome Awareness month. This year I’m joining in the 31 for 21 blogging effort to raise awareness about Trisomy 21. Why 31 for 21? There are 31 days in October, and in T21, the 21st chromosome is triplicated. In the coming days I’ll be sharing about questions I’ve been asked about T21, as well as other topics not related to T21 at all.
This morning I took dd16 and dd11 to a community event for mothers and daughters. A couple of minutes after I walked in, a staff member at one of the schools approached me and peered into the stroller. (Yes, I do sometimes use a stroller rather than the wrap!). She looked at Yirmiyahu and with surprise in her voice said, “He’s so cute!” She had cornered me about a month ago when I was at the school to inquire about if the news she had heard that we had had a baby with special needs was true. At that time I got the impression that she thought this was something hush hush that I should be feeling ashamed or sad about, which isn’t even a tiny bit true. Today she seemed surprised that he was cute because she knew he had T21 and that’s not what she was expecting. (I know, this is my cue to insert a current photo here but I don’t have one so you’ll have to scroll back to other posts that have pictures.:))
I said, “Of course he’s cute!” I had picked him up and she looked at him close up and said, “He looks like a normal baby.” I have an emotional trigger to the word ‘normal’ – does my baby having T21 mean he’s not normal? I replied with a smile, “Yes, he is a normal baby but maybe a little cuter than usual.” “But he doesn’t look like anything is wrong with him,” as she looked at me questioningly. I could tell she was wondering if she was mixing me up with someone else, so I confirmed for her, “He has Down syndrome.” “But he doesn’t look like it. How can you tell? There are five signs, right? But I don’t see any signs of it. Are you sure he has it?”
I wasn’t enjoying this conversation from the very first comment and was trying to remain polite. What does she think, that I’m making it up? I told her there are more than fifty possible signs of Down syndrome (maybe more than 100) and which signs people with T21 have vary from person to person. She wanted to know which signs Yirmiyahu had but I thought that was none of her business so instead I assured her that we had done genetic testing and we were absolutely positive that he has T21.
I don’t tell most people that I see locally that Yirmiyahu has T21. Not because I’m embarrassed or because I want to keep it a secret – not at all. I’m very comfortable speaking about it and Yirmiyahu is perfect just as he is. But I know that most people have negative preconceptions about T21 (as I did before Yirmiyahu was born) and I want to give people a chance to appreciate him as a sweet baby without them looking for the ‘label’ when they first see him. Once they have a chance to see him as a baby rather than as a syndrome, then at a later point I can share with them about his diagnosis and then there’s a place for more helpful dialogue.
Today the woman who was looking at him was looking for signs of his diagnosis rather than seeing him as a baby and that bothered me. I know I can’t control people’s reactions and I’m sure there will be many interesting interactions in the future when I’ll be asked about this issue. But I so much wish for now, and even more for the future as Yirmiyahu gets older and it becomes more obvious that he has T21, that people will be able to see him for himself.
Here’s our newest baby apparatus – a crawling track!
If you’re anything like me until about 2.5 months ago, you’ve never heard of a crawling track and can’t imagine why in the world anyone would want one! I read about this when Yirmiyahu was two or three days old, and once I understood the benefits resolved that we would make one for him.
The idea of a crawling track is to provide a safe and comfortable environment in which your baby is encouraged to move from birth (if you have one at that point). Why not the floor? The narrowness of the track allows the baby to move forward, and the sides give him something to push off against. A blanket on the floor would get rumpled and in the way, a mat on the floor doesn’t have anything for the baby to push against to keep him going straight. Also, the track can be lifted on one side at different angles depending on the age of the baby, according to what is needed to help him make his way down the track (higher for very young infants, lower as they get older). Once a child knows how to crawl, they don’t use a crawling track anymore – this provides a place for them to have lots of early opportunity to move and when they can crawl on the floor they won’t need this. The recommendation to use a crawling track comes from the work of Glenn Doman, who has studied the development of healthy and brain damaged children for over fifty years and shares practical suggestions for parents based on his experiences.
What’s the point of encouraging them to move? Very much in brief, there is a direct relationship between movement and learning. Crawling on the belly and creeping on all fours is critical to integrating the primitive reflexes of the lower parts of the brain. The lower parts of the brain are organized in the first year of life through crawling on the belly and creeping on all fours. The more organized movement there is, the better it is for the brain. This is good for any baby, but for a baby with issues like T21 I think this is of even more value in enhancing their physical and cognitive development.
Yirmiyahu below on the track for the first time – one end was slightly raised so that he would be at an incline that would assist in his movements. Edited to add: It’s recommended that a baby go down the track ten times a day – so far Yirmiyahu only goes down it a few times daily but we’re working up to the recommended amount of times.
You can see below how he’s lifting his head and pushing one leg against the floor of the track to propel himself forward.
The next picture was taken just a couple of minutes later – notice how he’s moved forward on the track. It helps to have brothers to cheer him along the way!
These can be purchased in the US for about $450 – not cheap! I knew this was something we could make ourselves but it took a while to make it because I wanted to do it as frugally as possible, and that meant finding materials that I could recycle for this project. A couple of weeks ago, we found something that someone was giving away that looked like we could dissemble for the materials, and brought it home. That was a great find, but the next day, ds10 found something even better, which is what we ended up using. It was just the right width and length for the track and the sides, and was basically a board covered with a thin layer of foam and material (we took this apart so that it could be washed before using it). The track is supposed to be six feet long, and the sides are between 6 – 8 inches high. The foam wasn’t one inch thick, which is what was recommended, but it’s comfortable and firm so it works out just fine.
Though it’s recommended to use vinyl or naugahyde for the top layer, I preferred the soft and velvety material that I used – it’s smooth enough that it doesn’t impede movement, but there aren’t issues of offgassing that vinyl would have. Then again, it won’t be as easy to clean as vinyl but to me that’s a small price to pay for something that is better for the baby’s health, not to mention more cozy. Dh cut each side piece and then affixed them to the bottom piece with brackets. The ten brackets were our only financial outlay for this project – a total cost of twenty shekels ($5). Once he finished that, he left the rest of the project for me. While it took time, it wasn’t difficult, and I was very pleased with how it turned out.
We keep this in the living room and Yirmiyahu goes in as often as we can manage – people like to hold him a lot when he’s awake so this limits his track time. Since babies move so much in their sleep, it’s recommended to put them in this rather than a crib to give them room to move, which we do for naps. At night, he sleeps with me and his movement is limited to him squiggling himself as close to me as he can get. Which I totally love.
This morning I woke up feeling inadequate to deal with the needs of all of my children, and felt particularly guilty that I’m not doing enough for Yirmiyahu. I was originally told that he’d get an appointment at the child development center around the age of 4 – 6 months, and I thought that it would be okay to wait for that. I’ve bought some books and have doing some things at home with him to aid in his development, and thought I was on the ball. But at ten weeks old, I’m now feeling like I’m behind since I’ve been told recently by several parents of children with Trisomy 21 that I’m supposed to be getting him to therapy appointments by now. That’s not so easy here since I can’t make the appointments until they’ve processed all the initial paperwork we’ve submitted so I have to wait for them to contact me.
Well, G-d is very good to me and knows my limitations, because this morning as I was sitting in the doctor’s office for another child, the child development office called to tell the doctor that they had an opening for today and wanted me to have it, but weren’t able to reach me. She smilingly looked at me and told them, “They’re sitting right in my office this minute!” I was so happy to get the appointment with a physical therapist and get the process started for him.
Later that day when I went for my appointment, I was a bit disappointed about it all. No, not disappointed. Discouraged is more accurate. When I got there, they asked me questions about the baby and a number of questions I didn’t see as directly relevant to a physical evaluation, like how old he was when I found out he had Trisomy 21, where I was notified about it, how they told me. But they finally finished with that and I was happy we were going to get down to business of them evaluating him physically and giving me suggestions of exercises I could do with him at home.
That wasn’t what they had in mind! They were nice, but I can’t explain the tone that all of the questions/comments were made in – very kindly, not quite condescendingly and not quite patronizingly, but it didn’t make me feel warm and fuzzy at all. I felt like it was a psychological intake, and that somehow everything I said was a reflection of my poor parenting. For starters, my husband didn’t come – it didn’t even occur to us that he should. They wanted to know why (he has to work!) and said that he really should be there for every single visit. Then after asking about our family (Did you finish high school? Really, you finished high school?), children (where do they each go to school? How do you get them to school each day?), I was asked about if I give Yirmiyahu any vitamins. I told them yes, that I supplement with Nutrivene-D, a special formulation for people with Down sydrome, as well as probiotics. (What? Did the doctor tell you to do that? And you thought it was okay to give that to him on your own?)
Then they told me that I don’t support his head properly when I hold him. A bit later they asked me what position he sleeps in, and when I said that he sometimes is on his stomach, asked me what gave me the idea that I should do that. I explained I do this specifically to help him develop his muscle strength and because tummy time is known to be very important developmentally, and they told me that even though I thought I was helping, I’m endangering him and there’s no benefit to him anyway.
Then they weighed him – he’s hardly gained any weight. They told me that he needs supplementing with formula since the nursing is too tiring for him and taking too much effort. (I’ve been very concerned about if he’s been eating enough, so in this case I appreciated their feedback although I didn’t totally agree with their conclusions.)
They put him on the padded table to watch his movements for about fifteen minutes; they said that his body motions are at an eight week level, which I suppose is good since his gestational age is eight weeks (he was born at 38 weeks). They seemed to say that because there are movements that are ingrained in a young baby from before he’s born that then disappear, that what we were seeing might be from then and not reflective of his movement ability now. I wasn’t sure what the significance of this was.
When it was finally time to leave after an hour and a half, I put the baby in the wrap. And then I was told that was dangerous, that I was causing head extensions and I needed to put him in differently. By this point, he was screaming and needed to be fed, and I didn’t have much patience anymore for listening to someone tell me that every single thing I was doing was harming him. I had walked in with so much positivity and as I walked out, I felt like all the things that I had done specifically to aid in his development had been turned around as wrong. It wasn’t the best feeling that I’ve ever had.
But this was just the ‘getting to know you’ meeting, and hopefully next time we’ll actually move to more assessment and skill development. For now, I’m going to have to pat my own back for the efforts I’m making with Yirmiyahu, and will continue to stay open to their assistance and suggestions.
When Yirmiyahu was born, I wasn’t able to nurse him right away – we were rushed to the hospital in an ambulance, then the nurses kept him in the nursery for hours until I finally saw him. At that point, he was in the deep sleep that newborns go into a couple of hours after birth, and nothing could induce him to wake up.
That was before that we realized there were medical issues or Down syndrome; then he was transferred to the NICU. For the first week he was there, he was on a feeding tube. When they told me he was strong enough to start nursing, it was very slow. Initially he couldn’t get latched on, then once he could latch on, he couldn’t stay latched on for more than a second. It was very challenging to teach him to latch on and I had to do it again, and again, and again (at five weeks old, he’s getting the hang of it but doesn’t latch on for more than a minute and never does it without my help, so he still needs a lot of assistance with this).
I continued pumping (he had gotten my milk from the first day via the feeding tube) and hoping that he’d get strong enough to nurse fully, but it was very discouraging. He was such an easy baby, hardly crying at all – the exceptions were when he got a blood test and had a bris, and even then he stopped crying as soon as it was finished. So you can imagine how hard it was when he would scream and scream as if he were in pain every time I tried to nurse him.
After three weeks, I contacted a local La Leche League leader for help. I’ve nursed nine babies before this and never needed the assistance of a lactation consultant, but this was a different situation. Since he was getting most of his nutritive needs via a bottle, I was concerned that he’d have a hard time transitioning to just nursing since the way a baby uses his mouth when nursing or when drinking from a bottle is so different. I specifically asked about the SNS, supplemental nursing system. She was eager to help until she heard that he had Down syndrome – then she told me that she didn’t have experience with that and gave me the number of a friend of hers who successfully nursed her daughter (who had DS) for two years. But I wasn’t interested in traveling to yet another city to meet with her.
Anyway, the LLL leader met me on her way out of the city for Shabbos, and gave me the scaled down equivalent of an SNS – a feeding tube. I told her I could work out how to use it with the help of the internet, and dh got busy rigging a makeshift SNS system for me (my husband is very good at finding creative solutions!). When I tried to use that, I came very close to crying or screaming with frustration. I ended up flinging it off and later put it away in the kitchen cabinet, where it’s never emerged from since. 🙂
A lot of time was being taken up every day with the feeding process: I’d nurse him, pump, then give him a bottle so he’d actually be full. It was very tiring and time consuming, so much so that it felt close to a full time job sometimes. At one point, a good friend responded to my exhaustion and told me I wouldn’t be any less of a mother if I just gave him formula. And she’s right, I wouldn’t be. Breastfeeding isn’t what makes you a good mother; how you parent does.
But even though it was so demanding, I felt like this was something I had to do for him. Babies with Trisomy 21 have weak facial muscles and this is a big part of why breastfeeding can be so challenging – they often lack the oral strength for nursing (his weak muscle tone in his tongue was responsible for his episodes of apnea when he was in the NICU). Most babies with T21 develop tongue protrusion, and this practice is encouraged by bottle feeding. That’s not something I want to encourage. Nursing can help prevent this from becoming an issue – an excellent article that I read by a well-known speech therapist detailed how some of the features associated with Down syndrome are part of a cascade of consequences that begins with bottle feeding. It’s called The Oral Motor Myths of Down Syndrome. Breastfeeding is an oral workout for a baby, since it works the facial muscles, including the tongue. So I think of every nursing session as oral motor therapy for him.
Nutritionally Yirmiyahu needs the qualities of mother’s milk since his health was compromised when he was born, and also because it’s typical of those with T21 that they have weaker immune systems. Studies have also shown that breastfed infants have IQs that average 5 – 10 points higher than bottle fed babies. I’ve never thought of this as a big deal with neurotypical children, but it’s worth the short term discomfort and pressure for me in order to give Yirmiyahu this long term benefit; there’s a lot I can’t control or change about him having Down syndrome but this is something that I can do.
I had pressure from his doctors to stop nursing him and give him formula. This was because his weight didn’t go up for the first few days after he came home from the hospital. I wasn’t worried, since I saw he had plenty of wet and dirty diapers, but they were concerned. But the numbers on the scale were more important than my opinion in this case. It would have been so, so easy to quit. It’s challenging to be working so hard at something and then to be told that your baby is better off without your efforts.
Yirmiyahu (5 wks)
I’m not yet at the stage of fully nursing; I’m still pumping for about fifty percent of feedings. When I nurse him, it takes a long, long time, and often he’s still hungry forty five minutes later; in those cases, we give him a bottle afterward. But we’re getting there and I’m confident that we’ll make the transition to full nursing. Most mothers with babies who have T21 don’t nurse them, because the experience can be so daunting. I totally understand them! The main thing that helped me was remembering why I felt this was important, keeping my eye on my goal. And the other aspect of this was not giving up. Sometimes you have to keep on keeping on when you have tough situations to get through, and this is no exception. Persistence, persistence, persistence!
Today I spent the first part of my day in Tzfat, where I had two appointments. Since I already had one appointment scheduled in the city, I thought it would be good to maximize my time in the area and found a craniosacral therapist there to treat the baby, so that was my second appointment.
I think that craniosacral therapy is valuable, particularly for a newborn who has recently had to fit through the birth canal and probably experienced some kind of pressure on the skull that causes misalignment. There are a number of potential issues that can be positively impacted by doing craniosacral adjustments, including colic, difficulty in sleeping or feeding, and birth trauma. The main downside of this therapy is that it’s not something that is covered by health insurance, but then again, it seems that most of what I find most valuable relating to health care isn’t!
Another thing I had wanted to do this morning was to meet up with someone in the area giving away classical music cassettes. I’ve been doing hours of research on Down syndrome every day beginning when the baby was two days old, and one thing that I came across was the importance of music therapy in stimulating the brain. Mozart and Bach were particularly recommended.
I started looking into purchasing some classical music (you should see the list of things I think would be valuable to buy for this baby!) but was delighted to see a posting a short time later by someone in Tzfat giving away lots of classical cassettes. A neighbor had given me a cd/cassette player around Pesach time, so I have a way to play the cassettes. I emailed to ask if she had any Mozart or Bach, and sure enough, she did! I told her why I wanted them and she very generously put aside 11 cassettes for me, 6 Mozart and 5 Bach! That was such an amazing thing! I’m looking forward to using them next week after Tisha B’Av.
And on a different note, traveling to Tzfat made me once again appreciative that the baby was in the NICU in Nahariya rather than the Tzfat hospital that I was in labor at. The ride there is along a winding road and so nauseating that I don’t know how I would have managed it every day. I took dd11 and ds10 with me today, thinking they would enjoy walking around the Old City of Tzfat while I was taking care of my appointments. Poor ds10 tends to get carsick, and threw up on the way there and the way back. We were all very happy to get home. 🙂
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!”
Yirmiyahu (3 weeks) at bris
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!
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.
