Avivah Werner

Category: Parenting

  • Double birthday dinner cookout

    Our oldest son turned 19 two days after Yirmiyahu was born, so there wasn’t much of a celebration for him at home.  We wished him a ‘happy birthday’ and joked that the shalom zachor celebration was a party for him, too, since it was the evening of his birthday.  🙂

    Exactly a month later, dd16 had a birthday.  Again, no celebration, though it’s not uncommon for us to delay parties somewhat with the hope to surprise the birthday celebrant.  Yesterday dd17 and dd11 took her to the beach in Akko (Acre) as a girls’ day out in honor of her birthday, but it wasn’t a family get together.  But plans were in the works for both dd16 and ds19.

    Dd16 was at the forefront of plans for this birthday party for her brother, not knowing that a couple of her siblings were conspiring to surprise her at the same time.  She baked him a lovely cake decorated with a gemara (Talmud).  Ds10 baked a cake for dd16 a few days ago but the freezer was full and so it stayed wrapped on a pantry shelf – it was still pretty fresh but dd17 wanted to serve something nicer.  So she tried to get dd16 out of the house while ds13 prepared a chocolate brownie cake with a vanilla pudding layer and a chocolate pudding layer.  Yum!

    Preparing for campfire

    What they decided to do was to have a family cookout at a local forested area that is legally zoned for campfires, so we didn’t have to get permission to have it there.  It took a good bit of preparation to gather the wood, shlep all the food there, etc, but it was worth it.  Once the campfire was going, dd16 lit the candles on the cake for ds19 and we all started singing ‘Happy Birthday’ to him.  He was really surprised; at first he thought we were singing in honor of his sister’s birthday!

    While he was admiring his cake and thanking everyone, dd17 was lighting the candles in the shape of a 16 on the second cake, and he had hardly finished thanking dd16 for the cake when we all started a second round of ‘Happy Birthday’, this time for dd16!  It was amazing that they were able to surprise dd16, but that’s why the cake was baked just an hour before the cookout; if they had done it further in advance she’d probably have gotten wind of it.

    They both cut their cakes and served everyone a piece of each.  The other family in the campground area apparently heard us singing because a few minutes later, they brought over plates of bamba (a popular Israeli peanut corn puff snack) and popcorn.  A couple minutes later, they came with the next round, a plate of nuts and sunflower seeds and a plate of olives.  And a couple minutes after that, they brought us four containers of dips – eggplant, humous, techina, and red cabbage salad.  They were finishing their family party and hearing our party, wanted us to enjoy what they had rather than take it home – and they assured us that everything was store bought and had a badatz hechsher (kosher supervision).  Only in Israel!  It was really nice and their additions definitely added to the festive feeling.

    While everyone was enjoying the cake, ds13 was grilling hot dogs and chicken wings, and checking the potatoes and onions that they had started roasting as soon as they had gotten there to set up.  We also brought a marinated kidney bean salad that dd11 prepared, so there was plenty to eat!

    After we all ate, the kids built up the fire again.  As they were doing that, seven bicyclists with flashing red and blue lights headed straight for us.  Our backs were to them, so we didn’t realize until they spoke to us that they had come to check out what we were doing, and that they were policemen!  They were very pleasant and it seems they just wanted to check out what was happening.  After suggesting that we be careful and try not to set the forest on fire – we agreed that would be a good idea – we wished each other a good evening and off they rode.

    After that, we sang together by the campfire.  When we’ve gone camping, one of the nicest parts is always the evening meal – building the fire, cooking the food over the grill, eating it, and then singing together.  I miss being able to go camping – without a car it’s not so simple to go to a campground.  The older kids were researching campgrounds last week because they wanted to have their own camping trip, but it was so costly and complicated because of travel that they opted not to pursue that.  Having this tonight was like having the best part of a camping trip, without having to go far from home.

    Finally, what campfire would be complete without marshmallows to roast?  The little kids loved being able to do this by themselves, even ds3.  We brought along wafers and they sandwiched the roasted marshmallow between the wafers, our Israeli version of smores.

    It was a wonderful evening that we all enjoyed, and it happened thanks to everyone getting involved and doing their part.  My family is growing up and I appreciate every opportunity that we have like this when all of us can be together.  I know it’s not going to stay like this forever, and I savor it while I have it.

    Avivah

  • Nursing baby with Down syndrome – not easy but important

    Yirmiyahu – (5 wks old)

    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!

    Avivah

  • Private nursing rooms in public places – so, so helpful!

    Today I took the baby to a pediatric cardiologist in Nahariya for a follow-up – the NICU doctors recommended we take him to different specialists for each of the concerns they had right after his birth. (The doctor said everything is normal and that there’s no reason to come back for another six months, when we’ll check everything again.)

    Visits to the pediatrician and for blood work are easily taken care of locally.  But all of the specialists are located in different cities, and this adds a component of stress to the experience.  The night before I have a visit, I spend a lot of time figuring out which bus to take to whatever city I’m going to, then which intercity bus to take once there, and how to get from the bus stop to the office I need.

    Then early in the morning, I wake up early in order to have time to pump so that I’ll be able to take a bottle with me, and also nurse the baby.  Until today I’ve taken the electric pump with me and have to find a place to use it so that I can prepare a second bottle while I’m out.

    So a good bit of this pressure is related to needing to have bottles ready for when I go out. This is because we’re still at a transitional point with nursing; it’s going very well but where we’re at right now is more typical of a few days after birth than five weeks. That means that he needs a lot of help latching on and staying latched on, which is really hard to do discretely; this requires more privacy than generally is available in a public place and I can’t do it with a blanket thrown over my shoulder.  I’ve been dreading these appointments more and more since they are so wearying and take so much energy to prepare for, over six hours away from home due to using public transportation, and then I’m so tired when I get home that I have to rest.

    Today I went to a part of Nahariya that I’ve never been to before, so there was the usual effort involved in trying to figure out how to get there. Once I arrived, I was over an hour early for my appointment, so I strolled through the mall where the office was located.  As I got to the third floor, opposite the cardiology clinic, I was surprised to see a room with a sign: “Nursing and changing room”. I pushed the door, expecting it to be locked (it looked dark and unoccupied) but was pleasantly surprised when it swung open.

    Inside was a simple setup – a couple of padded chairs, a low table, and a sink. Nothing fancy. But it was quiet and it was private – and it was perfect! For the first time in all of the traveling I’ve been doing with the baby since he was born, I was able to nurse him somewhere except for at home. It was so, so relaxing. Sometimes you don’t realize how much tension you carry around with you until you don’t have it!

    And for the first time since doing all of this traveling, I didn’t need to give the baby a bottle. He was content during the entire doctor visit, slept soundly for the next two and a half hours until we got home, and I didn’t need any bottles at all during the entire 6.5 hours we were out!  Having this room made such a huge difference to my day – I was so grateful and wished I knew who thought of the idea so that I could personally thank them.

    Maybe these rooms are common – this is the first I’ve seen in Israel, but until very recently I wouldn’t have been looking! If so, it’s a trend that will hopefully catch on and become much more widespread.

    Do you have nursing rooms in public areas near where you live? Are they common or hard to find?

    Avivah

  • Building sense of responsibility, competence, confidence in children

    I’m in the happy situation of currently reading aloud to my children two of my all-time favorite books – the Little House on the Prairie series, and Understood Betsy, by Dorothy Canfield.  A couple of days ago when I read one of the chapters, it struck me how similar some of the underlying messages of the books are.

    Yesterday a reporter emailed me some questions to flesh out an interview for a magazine I had done with her about homeschooling, a week after Yirmiyahu was born.  Insightful and valuable as her questions are, I won’t have time to respond in detail to them, but they really underscore the same indirect underlying message of the two chapters that I wanted to share with you.  I don’t think it’s a coincidence that I received the questions that relate to the topic I was planning to post about today!  The questions were, how do you go about:

    1) developing a sense of personal responsibility in children

    2) developing a child’s natural curiosity and love of learning

    3) instilling in the child a confidence in his unique abilities

    In the second chapter of Understood Betsy, a young girl of nine is moving from her home where she has been extremely coddled and overprotected to living with her relatives who value independence and hard work.  In her very first interaction with them, she’s handed the reins to the horses and told to go ahead and drive home.  City girl that she is, she has no clue how to handle them.  But since her uncle who is with her is seemingly unaware of her inability to drive the wagon and busies himself with something else, she has no choice but to try.  And after a bit, she figures out what to do.

    This happens again and again throughout the book, that she’s given opportunities to do age appropriate activities on her own or with strategic guidance from adults, and it’s fascinating to watch the transformation of an insecure, dependent, incompetent little girl into someone who thinks for herself and trusts in her ability to find solutions and get things done.

    Similarly, in Farmer Boy (third book in Little House series), Almanzo is given a yoke for a calf for his tenth birthday.  His father leaves him with two young calves and tells him he’s sure he’ll figure out how to train them using his new yoke.  Initially, Almanzo is mystified about how to go about this but through trial and error, he figures it out.

    Both children experience tremendous pride in themselves when they figure out on their own what they needed to do.  What was it that the adults around them did that led them to their discoveries, to building their sense of responsibility, competence, and confidence?

    1) Firstly, loving adults in their lives knew what the task required and knew it was within the abilities of the children.  It’s important to give children opportunities to stretch themselves, but not to give them something so impossibly difficult that they’ll give up in despair.  And it’s also important not to give them something so easy that their abilities aren’t respected or recognized.  (To clarify, I’m talking about when giving over jobs for the sake of building character. Sometimes a job needs to be done and even if it’s boring or repetitive for a child – eg sweeping the floor, washing dishes – that’s okay.  But you wouldn’t want all of the tasks you give your child to fall into this category.)

    2)  The tasks the children were given were real and meaningful.  No one finds busywork satisfying, and children can quickly recognize when they’re doing something of inherent value and when they’re having something fobbed off on them to keep them busy.  They got built-in feedback about what they were doing was working or not (the animals didn’t go where they were supposed to go or do what they were supposed to do).

    3) Lastly, the adults didn’t hover around, giving suggestions or giving the message that they as adults knew what to do and how to do it.  They gave the children the clear message that they trusted them to figure out something new, and gave them plenty of time and space to work it out.  They didn’t within five or fifteen minutes return and start questioning if the children needed adult assistance or tell them the best way to get the job done.  They stayed out of the way.

    This is a hard thing to do, particularly in this day and age.  We want so much to be helpful and encouraging that we easily co-opt the responsibility for the task by being overly involved.  The reality is, however, that only one person can accept responsibility for something at a time.  If your child knows that you’re still taking responsibility for the job you gave him, he’s not going to accept the responsibility for himself.  So sometimes we need to let go, to learn to sit on our hands or bite our lips or whatever we need to go to stay out of the way and let real life learning happen.

    I think all of this is very relevant to modern day parents, though most of us don’t drive wagons or have farm animals that need training!  And it’s also very relevant to the questions I was asked above about homeschooling.  Whether it’s regarding day to day chores around the house, homeschooling, or any other area that we want to encourage our children to develop healthy independence, we need to give our children opportunities that will stretch them, the opportunities should be meaningful, and we need to let them have responsibility for the success of the experience.

    This isn’t just for little children!  As a parent of children ranging up to age nineteen, I continue to remind myself of these principles and come back to them in a variety of different circumstances.

    Avivah

  • Checking out another elementary school option

    In the past couple of months, I’ve been doing research on different school options – girls high schools, boys high schools, and even elementary schools.  This isn’t because I’m unhappy with the local choices as much as that I’m looking for schools that best reflect my personal values.  (I’m hoping to find time to write some posts in the next month on the American/Israeli charedi differences and share my thoughts on that with you.)

    This Tuesday I called the principal of an elementary school that I’m interested in, and she told me that this Thursday is the last opportunity for interested students to apply for entry for the coming year and be interviewed.  I was glad that I made the call in time and that I didn’t have another appointment for the same day!

    I was planning to take the baby with me along with ds6 for his interview, but about ten minutes before I left realized that since I pump and prepare a bottle of my milk for when I’m out with him (we’re in a transitory situation regarding nursing), I could really leave the baby at home and he’d probably be a lot more rested!  On the spur of the moment, I asked ds4 if he wanted to come along, so he rushed to get dressed and then out the three of us went to catch our bus.  From there we went to the central bus station, then onto another bus to another city where the school is located.

    I was so happy that I took ds4 along – his eyes were literally shining with excitement as he was looking out the window at all the sights, and he and his brother were so cute sitting and chatting excitedly together on the bus.  I was glad to have a chance to spend with both of them, since recently I haven’t been giving them as much time and attention as I’d like, and this was a great opportunity to be with them without distraction or interruption by anyone or anything else.

    We got to the yeshiva, and I was surprised by the big and beautiful campus.  We couldn’t figure how to get in at first, but once we did we found the office and went in.  Since we were early, ds6 was taken for his interview pretty quickly, which lasted for almost an hour.  This didn’t go so well, since he felt intimidated by the new situation and it being in Hebrew, and spoke very hesitantly and quietly – though usually he’s very outgoing and confident.  Though his spoken Hebrew is good and adequate to speak comfortably with his peers, he told me afterward that he didn’t know certain words in Hebrew – eg triangle, rectangle – and therefore couldn’t answer some questions even though he knew the answers.  It’s ironic that his kindergarten teacher joked with her assistant that he shouldn’t bother with first grade, he should just go directly into second because he’s so advanced and constantly was telling me how amazing he was, while the interviewer wasn’t sure if he had an understanding of some basic concepts that even my four year old knows easily!  Emotional context and comfort makes a huge difference in a child’s performance.

    In the meantime, I let ds4 take some of the refreshments that had been put out (this kind of thing is a bit of a thrill for a young child who doesn’t get loads of treats at home!), while I scoped out the kids and parents who were arriving.  I was trying to get a sense of who the parent and student body of the school were; I already knew that the focus of the administration was in line with what we like.

    I was favorably impressed by the school staff; the parent body seems to be a good match for us, the school values and direction seem to be a good match for us, the local boys who would be in his class are great kids from families who know and like very much, and though we had pretty much decided to transfer ds6 to this school before the interview, I had an increasingly conflicted feeling.

    The conflict isn’t because of the school, which I think is a great choice, but because of the distance.  Transportation is provided to and from the school, so there isn’t a logistical issue, but for a young child to spend another two hours a day away from home in order to travel to school is something that I’m not comfortable with.  It means that he’d have to be waiting for his bus at 7 am and come home at 3 pm (with the additional stress to have him at the bus stop on time – it wouldn’t be outside of our house).  It means he would miss eating breakfast and lunch with the rest of us.  It means not walking to school with ds10 and dd11 and missing the relationship building opportunity with them.   (This past year ds13 picked him up from school for the last couple of months of the year, and it was really nice for ds6 to have time with his older brother, especially since ds13 usually gave him fruit to eat on the way home. :))  It means fifteen hours a week (transportation time plus the school day is 30 minutes longer than the local school) that he’d be spending with his peers in an unstructured situation instead of at home where parents and older siblings are keeping an eye on social interactions.

    I know that most parents wouldn’t agree with me that any of these points justify not sending him to a better school, with secular and Torah studies on a higher level and a religiously stronger peer group.  But to me, all of the advantages don’t add up to fifteen extra hours away from home every single week – would he really gain so much socially, academically or spiritually to offset the gains of being at home?  I’m not at all confident that would be the case.

    So at this point, dh and I have  decided to leave ds6 enrolled at the local school (just a seven minute walk from our home!), because we feel that having more time with our family is a higher value than being in a school that is technically the best fit.  We’re still discussing the possibility of a transfer to this school in the upper elementary grades, but for now, it’s one more decision made and out of the way!

    Avivah

  • Craniosacral work for baby, Mozart for brain development

    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.  🙂

    Avivah

  • Goodbye ‘Squiggles’ – our new baby has a name!

    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!

    Avivah

  • The Special Mother

    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

  • Welcome to Holland

    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.

     Avivah

  • Acceptance of genetic test results and intuition

    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