It's 1:00 am in the morning and I am tired. Oh so tired.

      It's 1:00 in the morning and I am tired. Oh so tired. The children went to bed late, as what usually happens during the summer months. They are always just too excited to soak up every minute of daylight and enjoy the outdoors. So yes, once again they went to bed late. Happy, but late. So what does that mean for me? Well, my downtime is pushed up to quite a bit later into the night. I simply can't move. I am exhausted. My body is yelling at me to slow down. To sit. I need some time to re-charge my emotional batteries after spending long days with loving but intense little people. I need time to collect my thoughts, think about the children, where I can improve, where we can improve as a family. Of course my thoughts almost always tend to wonder to where I made mistakes and wondering if I am failing as a mother. Am I giving them the tools they need to face adulthood? Am I showing them what passionate, loving parenting is all about, or am I simply coming across as a tired mother who can't get a grip on the mess, or in their eyes, life? As I look around me, there is quite a mess, so perhaps I didn't overdo it on the cleaning and did indeed give them attention. To be quite honest, it was such a whirl wind that frankly it's hard to remember the positive things I may have done as a parent. It's easier to remember where I went wrong. Where I lost my patience too quickly, where I had the opportunity to read a book to a child but instead went to clean up a spill. Where I didn't turn to answer my oldest as he excitedly told me about his day. I nodded, but I didn't meet his excitement.

   

      It's the end of the day and I need some time to sit, read, write, or perhaps to simply do nothing.

      Ok, I must admit that if I am sitting and doing nothing at the end of the day it means I am too tired to move my body, get up and get ready for bed. I have been known to sit on the couch late at night for a couple of hours too tired to get ready for bed. Too tired to put away any cleaning supplies, spices, liquid soap, salad dressing, tzedaka pennies, toilet paper or anything else our dear Sruly might enjoy watching ever so slowly being flushed or dumped down the drain at 4am. Too tired to lock the necessary cabinets, fridge, door locks. Too tired to clean up the evidence of happy children who played hard and left a tornado in their wake... I turn to my husband for help, but he is sleeping. Sitting up. It amazes me how men can do that. Imagine if women could do that. If we could sleep sitting up, or fall asleep right before our head hits the pillow, or even snooze standing up. Yes, I have seen fathers do that. I have seen my grandfather doze off while he was standing. (The sofa was behind him.) But here I am, too tired to move. Too tired to get up and go to bed.

      I wish I could stay half asleep and clean up like my husband, practically not missing what looks like deep  sleep, but I can't. I gaze at him again and smile. I feel truly blessed to raise our rambunctious crew with such a devoted man. You don't hear very much about the Dads of special needs children, but let me tell you, they are more special than words can even attempt to describe. I feel blessed to have a partner with whom I can make my way through miles of red tape, learning to advocate, juggling Dr appointments, guiding little feet to their therapy appointments, cleaning up mysterious messes throughout the house that even Sherlock Holmes wouldn't be able to identify but somehow my husband can, picking up broken items, (today it was a box of light bulbs that I dropped), throwing out carpets (not even going to go there)....

      I hope to be blessed to walk till one hundred and twenty together with my husband and children on this mysterious ride we call life. I embrace our ups and downs, the challenges that G-d throws our way, our learning experiences, our mistakes, our love for one another, our passion, our tears, our imperfect lives but our perfectly imperfect children. I love you from the very depths of my soul.

      Dear precious ones, there are times I may be too tired to talk, too tired to join in with your enthusiasm, times where I loose my patience and snap, but my heart swells with a deep love I never knew existed.

      It's 1:00 in the morning and I am tired. Oh so tired. But my heart is dancing.

                                                                                                                                    photos by Mendel

Tucking in their shirts???

      A couple of weeks ago our four year old fell and broke her collar bone for the third time. Last year she fell off of our radiator cover and broke one collar bone, and then about a 8 weeks later she fell off of our other radiator (while looking out the window), and broke the other collar bone.

      "She needed to even things out", my husband told the intake attending ER physician as he brought her into the ER once again.

      Our ten year old son is doing better this year than in past years.... A few months ago he broke his leg while jumping off of a moon bounce in a children's museum. The day that he got his cast off, 9 weeks later, he re-injured a number of tendons and ligaments that had grown weak while his leg was in his cast. They finally gave him a "rocker boot" which he wore for 5 weeks until he wore it down to the metal plated soul. A few weeks after that he pitched a hard ball which the batter hit straight into his face breaking his nose......

      A couple of years ago he fell off of a zip line in a park, falling hard onto his arm and added something new to our vocabulary; Supracondylar humerus fracture. He stayed overnight at the hospital and walked out the next day after surgery with three pins holding the bones together with a nice hot green cast. (The first of a few.)  So yes, thank G-d for normal breaks which don't involve me running to Wikipedia to figure out how to pronounce something.

   
      A couple of weeks ago, around the time our daughter broke her collar bone for the third time, my husband bumped into a friend of ours. During the course of the conversation she brought up how particular she is in ensuring that her children are tucked in. My husband, one who is never left speechless, wasn't quite sure what to say except that he is making sure our kids have a pulse and are breathing.

      "What to say?!?!"  I said a bit flabbergasted.

      "How about that this season we are working on making sure that there are no more broken bones!!! But if you want to make sure our boys are always tucked in, go ahead! Really, I have no problem! But don't get me involved! I am making sure we don't have any more ER visits this season that involve putting humpty dumpty or anybody else back together!"

      My husband calmly and a bit comically looked me into the eyes and said, "don't worry, I side with you one hundred percent."

      And thus I was reassured that my job suddenly got a little bit easier.

-Matana B.

                                                      Photos by Mendel B.

Friendship Circle

      About 6 years ago our family was introduced to the Friendship Circle. Sruly was still very young, and as a family we were adjusting to having an open house full of therapists. When Rivkee walked into our home and showed us what the Friendship Circle was all about I knew immediately it was a world we wanted and needed to be a part of. She introduced us to two very sweet and very mature teenagers. Masha and Darya, our children still talk about you! And later when Shane began coming to spend time with our children as well, the warmth and enthusiasm he brought with him only tripled our appreciation for such an organization. Our children felt the love these volunteers showed towards them as well as towards their brother with special needs. Instead of first having to explain to a friend why their brother was doing something that looked a little odd, they were able to invite their friends from the friendship circle into their home with confidence, knowing that we as a family were %100 accepted and loved - each and every one of us, including Sruly. Their visits became a time for our children to subconsciously relax and embrace a fun and much anticipated visit from our new friends. Masha, Darya and Shane have since graduated and moved on with life, however our children still talk about them and the friendship they brought into our home. Since then we, as a family, have participated in many of the yearly events that the Friendship Circle has offered our community. When we are out as a family, often times I am busy keeping track of our children than schmoozing, but I can't tell you how much I appreciate simply being in such a warm environment filled with other families who also have children with special needs. There is an unspoken and much needed connection. 

                          

      

      This past winter when Friendship Circle held yet another beautiful event, I asked my mother if she would like to join us. Usually when there is an event for the entire (typical) community, I go for the children. The events can sometimes be very busy, noisy, loud with lots going on and in the midst of all that, me trying to keep track of everyone. A little overstimulating. Of course I appreciate these events so much because my children always have such a great time and always come home happy, tired and with huge smiles on their faces. "But", I told my mother "somehow the Friendship Circle events are so calming and full of such warmth! Emma, you just have to experience it to see what I am talking about!" And my mother did. It's amazing how these special children can set such a beautiful tone simply by just being who they are. They truly are special children. We thank you friendship circle from the bottom of our hearts for what you are able to provide for these special children, their families and siblings. Thank you!

                 

photos taken by friendship circle ;)

     

As we Grow with Life.

      It's 7:30 am and I think I just gave up on sleeping for the night. The baby got up at 3am for the second or third time. I fed her and she went back to sleep. Then I heard Sruly get up.... He hasn't gotten up that early in a while so I really shouldn't complain, but doesn't G-d know that a mommy needs sleep? I have been up since 3am. I slowly got out of bed around 7am, realizing that there was no way I was going to get anymore sleep so I may as well start the day and join my Husband downstairs.

      I came downstairs and tried hard not to look at the mess. There was dirty laundry on the stairs waiting to be brought upstairs and put in the laundry hamper. There was a mess of hats, gloves, scarves, boots, mittens, coats and more at the bottom of the stairs making it almost impossible to climb over the gate (which was at the bottom of the stairs), gracefully. I was lucky I landed on my own two feet. Library books were all over the table, couch and floor. The kitchen sink.... well I won't go there. You would think the parents went to bed the night before too tired to clean.... Well, here I was, completely sleep deprived, surrounded by blessings but all I could see was mess and chaos. I even felt like I could see the noise. I could definitely feel my irritability and hoped that no one else could, but I think my dear husband was able to sense it from the other room.

"Don't worry," he said. "I will take over when I get home and you can take a nap."

    We have all had days, weeks and even months like these. Often times we just don't see the light at the end of the tunnel. We think the kids will never grow up, they will be toddlers forever. The mess with just multiply on its own no matter how often we clean. The laundry we feel has come alive and is out to get us as it grows and stretches across the house, slowly devouring everything in its path. The kitchen sink gurgles in protest as it tries to swallow the water being blocked by bits of leftover food and a mountain of dishes. We begin to wonder what exactly did we sign up for.... or did we? But somehow through it all, somewhere we manage to dig down deep and find the strength to carry on and care for the little cries, the spills, feed the hungry mouths, wipe the tears, read to the curious eyes, answer those often persistent questions of the curious minds, smile back at the beautiful smiles looking up at us. Looking up to us. They are watching and learning from our every move. Learning that it's ok to cry. Learning that it's ok to make mistakes. Learning about the value of love, of touch, of warmth, of devotion, of persistence. And finally they watch as we grow, but it's a secret that they don't know. They may never know how much they have touched us to the core and have truly changed us from the very depths of our soul. And for this we are forever grateful.

                                                     

                                                               photography by Mendel
                                                                                                                     

Submucous cleft palate

        About a year and a half ago when our daughter was two, we discovered that she had a submucous cleft palate. What is a submucous cleft palate? Here is a definition from cleftline.org

      A submucous cleft palate is one type of cleft palate. The word "palate" refers to the roof of the mouth and the term "cleft" indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate). At the end of the soft palate, the small finger-like projection of tissue that hangs down is called the "uvula". The term "submucous" refers to the fact that the cleft is covered over by the lining (mucous membrane) of the mouth. This covering of mucosa makes the cleft difficult to see when looking into the mouth.  Thus it becomes difficult to diagnose. The Dr explained to us that he doesn't actually see the muscles split. When he shines a light into the mouth, he looks up at the roof of the mouth to see if he sees a blue line going from the front and stretching to the back. That, he said, is an indication of a submucous cleft palate.  

      So in all practicality, what did this mean? Well, we knew something was not quite right because right from the start she had great difficulty feeding. Moments after she was born I tried to nurse her and she was barely able to latch on, let alone suck properly. She made a sort of a clicking sound with every suck. I am not sure if her tiny and very week cry was connected to all of this, but for the first few months of her life she actually sounded like a little mouse with quiet squeaks when she would cry. The nurses said they have never seen (or heard) anything like it. She even struggled to latch onto and suck from the bottle. I remember trying every trick in the book, working with a few different lactation consultants to try to be able to nurse her, but with no success. I would cry, she would cry because she was tired and hungry, then I would pump the milk, still teary eyed, and try to use the SNS. - Supplemental nursing system.

       I remember smiling and half laughing with tears in my eyes saying to my mother, "With all of the pumping, tubes, and shields there is absolutely nothing natural about nursing here!" 

      I did eventually fall into a routine of pumping for her, but I kept hoping she would eventually be able to nurse. (I think not letting go of the fact that she could not nurse wore me out. To me nursing is an extension of the umbilical chord, so I guess you can say it's very dear to my heart. It's a bond that I cherish, so there were a lot of tears during the first few weeks after her birth.) She fatigued too quickly while she was eating, so the rest of her meal I would feed her through a medicine dropper. Her food would also often go through her mouth and come up and out through her nose, causing her to choke and have difficulty breathing. I would feed her, propped up, holding the bottle in one hand and a suction to suction her nose out with the other to help her breath as the milk would come up through her mouth and nose. It almost seemed like there was a hole going from somewhere in the back of her mouth straight through to her nose... which we later found out, there pretty much was. Feeding her was a whole song and a dance, so much so that at one point I was ready for a feeding tube, but we did manage to keep her in the 10th percentile in weight. 

      Later, speech became an obvious problem. For the life of her she simply could not make most of the sounds. Looking at her I knew she completely understood what we were saying, and what she wanted to say, but just couldn't. Together with a fabulous speech therapist we began teaching her sign language. In no time at all she mastered about 100 signs, which soon became to 200 +.  At the recommendation of her speech therapist I took her to a local baby sign language class. It was there that I met a mother who asked me why my daughter was not talking. I told her it was because she seemed to have a high palate, to which she responded there was no such thing. I described her symptoms and she told me to make an appointment with a specific Dr In the plastic surgeon department and ask him to look for a submucousal cleft palate.

      Currently I think there are only two ways that they make the incision to do the repair. One is done by doing pretty much one straight cut, and the other, older method is called the radical method, in which they do a zig zag incision. I spoke with two different mothers who had the radical method done and they told me that later on, each of their children had to go back for a repair. After some quick research I did manage find a doctor in the same group who did the straight incision. 

      A couple of weeks later we were sitting in the Dr's office, waiting for the Plastic surgeon to enter. An incredible speech pathologist walked into the room with the plastic surgeon  They were very professional, asked a few targeted questions and then the speech pathologist took a look in her mouth. 

"Oh yes, I see it. She definitely has a cleft palate."

      I was so relieved we finally got to the bottom of her symptoms. Next we began discussing the option of surgery and its procedure. It sounded very intense. The operation typically takes about 90 min. They cut open the roof of the mouth to get to the split muscles and sew the muscles together. The kids stay overnight in the hospital for about 4-5 days. When they go home they are sent home with arm bands to prevent their elbows from bending. This is to prevent the child from putting anything into their mouths that may split the stitches. In order to allow the stitches to heal properly they may only have clear fluids for about one week, and just liquids after that until a follow up appointment to confirm that the incision area has healed. This typically takes about one month, in rare cases a bit longer. ...In my daughters case, because of her unusually thin skin, it took her 3 months.     

      We scheduled the appointment as I saw she was continuing to struggle with speech (still only two speech sounds), and eating was draining... but I was scared. I wasn't sure if I was making the right decision. To put her through that? I found two other mothers who, their own children also had this procedure. They were able to tell me a little bit more about what to expect. I was still scared. At one point I almost canceled the whole thing. Yes, I realized that in the long run, this would require her to be in speech therapy for many, many more years, and eating may always be tiresome for her, but my emotions were beginning to get the better of me. Yes, we were still going through a whole song and a dance to feed her (I had an enormous supply of medicine droppers and syringes), and get the right amount of calories into her, but never the less, we were doing it. She was managing to stay in the 10th percentile, and we were avoiding a feeding tube. I felt like I could continue feeding her the rest of her meals through a medicine dropper as long as she needed it. I was just too scared to put her through the surgery.  Finally I called an older and wiser mother of many children and told her what was going on. She listened, then told me that the Lubavitcher Rebbe  would often tell people to get a second opinion, specifically from a Dr who knows your family, whom you know and trust, and go with that advise. 

"Find another Dr who knows you and your family well, one who you truly trust. Ask him his opinion and do what he says."  she told me.

     So I did. In my mind, I truly did not want to go through with this, and was on the verge of canceling, but I told myself that I will follow his advice no matter what. My husband contacted another Dr whom we really trust and who knows our family well. After explaining everything to him, I was a bit surprised when he told us to definitely go through with the surgery, but oddly enough I felt calm about it. I figured I would follow the advise of the Rebbe, and just put my trust in G-d. Surgery was scheduled for one week before Rosh Hashanah. 

      We arrived at the hospital and were called back and admitted pretty quickly. I was suddenly so nervous I felt like it was me going into surgery. I got her into her hospital gown and just talked to her and gave her hugs. She knew something was up but obviously did not understand exactly what. They gave her a little verset (I should have asked for some for myself! I really wanted to ask the Dr for some but I figured he would think I was nuts). As soon as the verset began to kick in, my husband carried her to the surgery room and stayed with her until she was fast asleep. As they walked down the hallway she looked back at me and cried the whole way. My heart was breaking. 

      About an hour and a half later the surgeon came out to tell me that the surgery was a success. Thank G-d. It was over. I went back to recovery and sat down next to her. They had her on some serious pain killers, as she was still very groggy from the surgery. Her mouth and lips were swollen and there was blood trickling from her nose and mouth. It was not that much blood but to a mother looking at her child, barely conscious, swollen and in obvious pain, it looked like a lot. For the next three days in the hospital I kept wiping up her blood, held her, rocked with her, tried to distract her, from her constant pain, IV's, sang to her..... I did whatever I could to keep her as comfortable as possible. She truly looked miserable, but thank G-d the Dr didn't hesitate in prescribing her more pain killers. They told us that typically the kids stay about 5 days, or until they can drink enough liquid by themselves so the I.V. can be taken out. She was not allowed to suck from a sippy cup or bottle, as the sucking motion would split the stitches. By day number 3 I was so dizzy from lack of sleep and food. I began to slowly give her liquids through a medicine dropper again, since her mouth was too swollen to drink from a cup, and she hadn't mastered that anyway, and again, a bottle was not an option because the sucking would strain the muscles and split the stitches. We had success with the dropper. I figured the sooner we could get home we can all get more rest, and recovery (with a lot of pain killers) should go a bit smoother. Thank G-d we were able to leave the hospital the morning of day 4.  

      I tried my best to keep the arm bands on her. By week number 3 my little Houdini was a master at slipping out of them. We even taped them to her shirt, but she got around every trick in the book. Instead of fighting her I just kept a very close eye on her and made sure the house was constantly clean with nothing she could possible put in her mouth. Meal times were a bit stressful since she was upset she couldn't have anything, so I would often hang out with her in a different room. (Remember, this was holiday time.) She pretty much lived off of apple juice, hypoallergenic formula mixed with rice milk (for extra calories),  and yogurt until we got the ok to begin eating crunchy foods. 

     I would like to add here, that these children can only go to a special orthodontist who is experienced in handling fragile or thin skin and muscles. If the child needs an expander or other orthodontic work, remember that you want to be very delicate with the skin and muscles. We were advised that when the time comes, we should stick with the pediatric orthodontists in the hospital.  

      Was the surgery a success? Thank G-d yes! One week after surgery she looked at me and said "Mommeee".  The only sounds she was able to make prior to the surgery was the "Ahhh" sound and the "Mmmmm" sound. As the swelling went down and time went on, she slowly began making more and more sounds. It was really exciting when she learned that all of the signs in sign language that she had learned she was now able to say them! And if we still had trouble understanding her, she would pull out a sign for us. It was pretty cute. Eating also became less tiresome for her.

         It is now almost a year and a half after her surgery and she has finally reached the 50th percentile on the growth chart and is talking up a storm. I am glad we went through with it, and forever grateful for the wonderful doctors, the guidance and timeless advice we received to encourage us to properly help her. I hope in writing this to somehow help and encourage other parents who may find themselves on this path. 

- Matana B.

                           
                          The picture below was taken about 2 months before her surgery. 

                                                                           

Why we homeschool

      So what does our "typical" day of homeschooling look like? Well I guess that is almost like asking what do you eat every day. It always varies, but here is a little idea. 

      The kids slowly came downstairs help themselves to breakfast. Often I come down to the house smelling of grilled cheese sandwiches, a messy kitchen and dining room, and for the most part, satisfied children. After davening my son has been checking the news and then may pick a history documentary to watch before his official classes begin. Depending on how dreary the winter weather is, he often enjoys bringing a cup of tea to his class. I spend time with the the other children and daven, have a snack (or breakfast number two) do our math, play a little, read together (this includes parsha, stories on Yom Tov and pretty much everything and anything educational), sing, listen to story and music CD's, depending on how messy the house is we may do an arts and crafts (although today was a trip to the library instead), laundry, try to clean up (today was clean up the mural my toddler so proudly made using black (washable) paint all over the walls, window, table....ok, I will stop there, talk, play... and the list goes on. 

                                                                                                             Photography by Mendel B

      We began homeschooling with some pretty basic goals.

 To have an enthusiasm and a love for learning, and to be very much a part of what they were learning. I wanted to share in their excitement of learning.

To see the kids play happily by themselves and with each other. (With the exception of a remote control helicopter and race car, to date we do not own battery operated toys.) 

To be comfortable and content in their own skin. To have a healthy sense of self worth and value.

 I was looking for a more relaxed environment at home for our family. To have more opportunities for quality family time. More time to spend with the kids and to just plain enjoy each others company. 

To be able to work more on character and Midos and to instill in them a passion and a love for Yiddishkite. 

And last but not least, to have more time to work on our relationship with each of the children.  

                                             

Creating large "hail stones". We spoke about the hail that Hashem withheld in the sky and later let it come down during the times of Yehoshua. The drama of large hail stones coming to life!                                          

Photo by Mendel B

Below: Doing Math-U-See

                              
                                                                   

                            Below, early fall. No, we didn't have to worry about bedtime and homework.

                                     
                                       

Musings

      A few weeks ago I tried to order a new set of contacts online, only to find out that my prescription had expired just a few days earlier.

"What?" I asked my husband. "Can't I just change the date??"

"Uh, no. That means you have to schedule a new appointment with the eye doctor to get an updated prescription."

"And when am I going to do that?? In between the therapies, Dr visits, errands....!?? Why would they make a prescription expire??? I can't just drop everything I'm doing and make an appointment for myself. I hate making appointments for myself. I can't believe an eye prescription would expire!! Don't they know I can't just drop everything and go?!?!...and on and on I went.

       Of course I realize the importance of why they would do this, and I think I am a prime example. It's to make sure people set aside time to take care of themselves.... but sometimes it just seems like too much effort. I would much rather take care of the kids and family to ensure things keep running smoothly and the house doesn't fall apart. Yes, I realize this habit could be a recipe for disaster if the needs of mommy are ignored, but..... wait a second! A thought just came to me. I can take one of my kids along with me and have some one on one quality time with them. Yes! I think I will do just that. I quickly picked up the phone, made an appointment and got ready to go.

     My oldest came along with me. It was nice to get some quiet time with him. I can't believe how quickly he is growing up. I tried to size him up to see how we are doing as parents. He was smiling. That is always a good sign. I am so happy we chose to homeschool. He seems to really be growing. It's interesting that the very things that motivate his younger brother to learn, such as a little peer pressure, comparing grades and progress, a bit of competition, are the very things that seemed to be turning our oldest son off. As soon as we found an educational path of no tests or grades, just a laid back enjoyable approach to learning, he relaxed. He is enjoying learning and is once again embracing it. It's beautiful to see. This morning he was busy looking up facts on the Hindenburg, helium balloons, the Wright brothers and the Gold Rush in 1849, just to name a few. We do not follow a set curriculum for everything. Often times I find that the most effective path to true learning is to just let him follow his interests. He has discovered a great interest in Halacha and Chumash. It's really beautiful to see.

                                                                                                             Photography by Mendel B
   
      Yes, I worry that the kids may "fall behind" academically and not be up to where their peers are in "regular" school, but I need to keep reminding myself why we are homeschooling.

      Why are we homeschooling? There are many reasons that come to mind and for the most part they probably overlap each other. Where to start? Well, I was having a hard time connecting with each of our children after they would come home from a long day in school, tired, irritable, hungry, homework... Then there was dinnertime and bedtime. I guess the pace of life seemed to be going too fast with too many deadlines to meet. I don't know. I don't know how other parents are able to successfully do the "brick and mortar" school and still have plenty of quality time and downtime together as a family. But I knew that our daily routine wasn't working for us as a family. ....and of course there was the morning insanity of getting everyone out the door in one piece, dressed, fed, homework in hand, on time and smiling. Having spirited children with all sorts of different needs, special needs, high energy etc... I was frantically looking for a different way of life. And then of course, there was the individual reasons for each child why we chose to homeschool.

      It's amazing to me how there are no two homeschool families who are alike. Each of us are on our own individual journey of connecting with our children, finding joy in learning and bringing spirituality into our homes.