Genetics and accepting what is and what we don't know yet

When Ethan was born prematurely, and actually stopped growing when I was 26 weeks pregnant, the doctors at the NICU (newborn intensive care unit) thought that it was quite possible that diabetes is not what caused my son to stop growing in utero - but maybe, just maybe, he has a genetic disorder.

And the saga began...and still continues...of searching for a possible genetic link to my son's issues with eating and slower than expected growth.

A geneticist was given our case at the NICU, early on when Ethan was still struggling to stay alive. And to be totally honest, I was so focused on other things, like my son's survival and him coming home and also taking care of my daughter who was newly born and adjusting to being a new mom, that I didn't pay much attention to the geneticist.

And to be honest, I didn't want to.

She examined him. Her perceptions: He's small. Uh yeah, thanks. We know that. And she decided to run some tests. The results came back with weird results that left the doctors scratching their heads.

And that's when the excruciatingly, long story of my son's possible genetic disorder began. And that's also when we were made aware of what she was suspecting.

They thought he may have some form of dwarfism.

We were shocked. We do have genetic diseases that run in our family - diabetes being the first that comes to mind and celiac being the second. My husband's family has a ton of lactose intolerance and milk allergies. But I've never known anyone in either of our families to have dwarfism.

My intuition told me - and everyone in my world - that they were totally off on their genetic research quest. And forgetting a mother's intuition for a moment, we were actually told - by a number of other doctors and specialists - that the tests that were run aren't real. Why? Science hasn't thought to measure a "normal" range for growth hormone in babies - let alone premature babies - or other related tests (like IGF-1). So if they're not real, then why run them? Because that's what doctors do and many times, it helps. In our case though, it just left everyone stumped. The reason: Ethan's growth hormone was considered high, not low like in the majority of dwarfism cases, and he was small.

I felt and still feel that the lab results were off because he was born so small and fighting hard to survive. So his chemistry was a bit out of whack. I'm not a doctor, nor are my theories scientific or published in journals, but it's just a feeling I had. The other prevailing theory for his GI issues and slower than expected growth - and which totally makes complete sense to me - is that because he was born small, his digestive system was also very small when he was born. He developed really bad reflux. And reflux is KNOWN for being linked to feeding issues. Take the pain of reflux coupled with his premature size, and boom - feeding issues.

And for all of you diabetics out there considering pregnancy: I think he was also born small, and stopped growing in utero at 26 weeks, because I have had Type 1 diabetes for over 35 years, and my body just couldn't handle twins, pregnancy, and all that was involved. I had a tough first trimester, a great second, and a shortened and difficult third. But please, knowing what I know and being what I've been through, I wouldn't change it for the world. I have two beautiful babies that I love with all my heart. All children, and people, are handed a set of challenges in life - whether they are born to diabetics or not, premature or not - and the best we can do is face them, accept what life hands us, and learn.

Going back to Ethan and the story of genetics: I spoke with many specialists, cried to my close family and a few friends, read up on the internet, and paced the halls of our home at 3 am for months. The pain of not knowing, the fear of what may or may not be, was overwhelming to me. I was worried. I was soul searching. And I was praying for the best outcome possible.

I was crying to my husband, who so eloquently said: "Whether he has a genetic disorder or not, he is still the same Ethan."

He was right. Ethan, no matter what, is still the same lovable boy. And that's when it hit me. His words had helped me come to a place of acceptance.

I had made a pledge, set an intention, when I was pregnant that I would support both of our children's individual journeys. That I would be there for them and be present with them and who they are, listen to them, smile with them, and teach them to be grateful every day.

Ethan was re-tested and measured and x-rayed and scanned. And all of those wacky tests that made no sense to me the first time, when I was in a place of resistance, came back negative.

The geneticist wanted to do her due diligence though. She was convinced that something was wrong, that Ethan has a genetic disorder, and she was scared that if there is something, that she might not find it. She wanted to run more tests, an in depth look at his entire genetic make-up. The test - called a Chromosome Micro-array - costs around $100,000, and is performed RARELY.

That test also came back with inconclusive results. Nothing was missing, and there was nothing extra. A few homozygous chains, which every human being on the planet has. (What are Homozygous chromosomes? It's when you have identical pairs of genes for any given pair of hereditary characteristics. For example, if you had a double dose of brown hair in your DNA.)

Guess what? That is what makes us unique and different. No one has a perfect genetic make-up.

She is still searching, and wants us to run more tests. In the meanwhile, we've decided to see another geneticist for a second opinion. We are going to run the tests, mainly because I'm a mom and if there is something to be found, I want to be sure we know about it. So that we can manage it.

My gut still tells me that he was simply born small, and as he grows, the reflux, feeding issues, and all that is related to that, will work itself out. BUT, you never know. And as parents, we want to be sure to give our child the best we can. We want to support him and Aria through whatever they need.

And what Ethan has given me, through this whole experience, is a real lesson in acceptance - even when you don't know what you are accepting. I don't know if I'm accepting a genetic disorder or not. What I do know is that resisting it won't help him, me, or anyone else.

Life coach and Oprah magazine columnist Martha Beck wrote a great article once that has stayed with me, A New Leash on Life. She was pregnant with her second child when late in the pregnancy, an amniocentesis showed that her son has Down's syndrome.

Beck had the difficult decision of whether to abort or not. And after much soul searching, she felt strongly that she wanted to continue with the pregnancy despite many people telling her not to. Telling her what a difficult task it is to raise a child with special needs.

And he wound up being the greatest gift.

She spoke of all the lessons she learned, that I am learning as well, about not being a victim of your thoughts. I do tend to conjure up images and stories that are usually based on fear of what may or may not be. And we really don't know what will be. So the best thing we can do is accept what is, and get out of our heads.

Martha Beck learned lessons that opened up her world. She credits her success, abundance, and love of life to the lessons she learned from raising her son with Down's Syndrome.

I feel the same way. I have changed as a person so much since this experience began, and I bet there's more in store. I have learned to savor special moments and to stay in the moment during challenging times. I have listened and trusted my intuition more than I ever have in my life, and I actually feel much more self-confident. And I am also finding myself - just as Martha Beck did - becoming more successful, more abundant, and loving life more and more. I have everything I could ever want and need, and I KNOW that it's from the lessons I've learned through this whole experience. I have Ethan and Aria to thank for opening up my world to so much.

Hey there, geneticists, what you got for me now?

So long, NICU…Welcome home Ethan!

Ethan is home! We are all thrilled, and yes, utterly exhausted.

Ethan came home today after a week of final preparations at the hospital for his discharge. Despite an earthquake and a hurricane, we were able to leave the hospital only a day later than originally planned.

There is a lot to say about this entire journey, and I’m sure I’m still processing much of it. There has been a lot to learn - from a medical perspective, as a new parent and a new parent of twins and a new parent of twins who also has Type 1 diabetes, and lots and lots of spiritual/emotional lessons. I have been reflecting for quite some time now on what I can learn from this experience, and here’s what comes to mind as my top five:

5) Be mindful of facts and feelings – at the right time. It’s good to be mindful of one’s emotions, accept and process them. But sometimes, those emotions need to be checked at the door when the time isn’t right. I’m a better listener – and a better mother - when I just listen to the facts, not the feelings, when discussing matters that require my undivided attention – such as a meeting with a doctor. That’s probably true for everyone.

4) The power of prayer. It’s remarkable. But always be mindful of what it is you are praying for, and you will receive abundance in return.

3) Be thankful. Savor each wonderful moment life hands you – and even the not so wonderful ones – and be thankful for them. And be sure to thank God after receiving something you’ve prayed for.

2) Listen to and trust your intuition. I don’t know how many times I left the NICU crying because the doctors painted a dismal picture. But my gut kept telling me that Ethan is just fine or a specific direction to take or a good question to ask. Always trust your gut feelings. They are more often true than not.

1) Trust God/the Universe/or however you may call it. When you trust that the Universe is working in your best interest, forces are moved and set in motion to deliver the best possible outcome to you. It’s true. Really, I mean it. I have found time and time again – during the best and worst of times – that when I trust the Universe, every need I have is delivered in the most efficient and best way possible.

Ethan and Aria are asleep right now. We have music playing in the background. Lior is taking a nap. And I can’t help but think that it’s time to move on and forward. To process everything and finally relax into it. Take a vacation, enjoy life and our kids. We’ll see what the Universe has in mind for us next.

Lessons from the NICU: Getting over the Type 1 diabetic guilt, anger, and other related feelings

It’s time to address the elephant in the room. Is my newborn son Ethan in the NICU (it’s been almost 14 weeks now) because I have Type 1 diabetes? Which I’ve had for over 36 years, very well controlled now but not always so. And I was pregnant with twins; Aria is his sister. And I had them at an “advanced maternal age” as those high risk doctors call it.

If you ask me, the answer is partially yes, but no one will say that definitively. The reason that Ethan is in the NICU is because he was born very, very, very small, and is working on recuperating from things associated with that. He stopped growing at 26 weeks in utero because of negative diastolic flow – which means that the blood and nutrients were flowing out of his placenta rather than into it.

Why did this happen? No one can say for sure. I asked one high risk doctor, and he said: It could be diabetes, but there could be other reasons as well. “We don’t know.” Another high risk doctor told me that it is most likely due to the diabetes and the fact that I was pregnant with twins. It’s quite a lot for a Type 1 diabetic body – who has had the disease for quite some time - to handle, she said.

To be honest, the diabetes theory makes the most sense to me and is the prevailing one in my book.

So that leads us to the emotional side of diabetes and pregnancy: The guilt. The anger. The feeling that life just isn’t fair sometimes. The feeling of responsibility for putting him in the situation he is now. Starting his life out in a hospital with beeping monitors, pricks and prods, tests galore, strangers feeding you in shifts every 12 hours, the whole shebang. He’s just a baby. The nurses try to make it comforting, like home. They hold him, talk to him, and let him play. But still, it’s a hospital. Away from the home he still hasn’t gotten to know and love. Or the family he sees a few hours a week.

This is not what I dreamed of or hoped for. I dreamed of bonding, walks in the park, cute little outfits, and lots of cuddling time. I’ve had all of those things with Aria, and barely with Ethan - only with nurses, doctors, and monitors in the same room.

How do I let go of that? How do I become at peace with what has happened?

Fred Luskin, author of Forgive for Good and cofounder and director of the Stanford Forgiveness Project, says that mindfulness and focusing on gratitude and kindness are the antidote, as told in Letting Go found in the May 2011 issue of Oprah Magazine. Luskin says that these concepts apply to any disappointment or hurt that any of us has experienced. It does not have to be as traumatic as a newborn child in the NICU. It could be as simple as someone taking your spot in a crowded parking lot.

I did my best to make my pregnancy a healthy one. And it was. My A1C’s varied between 5.8 and 6.1. I exercised as doctors prescribed. I gained a healthy amount of weight. I monitored my sugars and calculated carbohydrates. I visited doctors and listened to what they said. I came out of this pregnancy healthy. Aria came out of this pregnancy healthy as well. We’re thriving.

And Ethan – who was predicted to not even make it – came out of it with some feeding issues, a little small, and a few other things which he has already outgrown. He’ll outgrow the feeding issues as well, and of course, he’ll outgrow being small.

I willingly chose to have children, to get pregnant, despite the diabetes and my age, fully knowing all the risks involved. It’s a decision I made that I do not – and never will – regret. I have two beautiful children, and I love being a mom. I cannot feel guilty for that. And I don’t. Just the opposite: I’m grateful.

Becoming a NICU Warrior Mom

Ethan and Aria were born prematurely thirteen weeks ago. Ethan has been at the NICU (Newborn Intensive Care Unit) since he was born. I have decided to devote the next few blogs to sharing the lessons I am learning from the NICU experience.


I have been transformed into a warrior mom during my son’s journey at the NICU.

In the beginning of Ethan’s stay, I was quite the opposite of a warrior mom. I was completely overwhelmed the first few weeks actually. I was recovering from a c-section and had a newborn at home on top of having a child in the NICU. I was sleep-deprived, and my body was going through a huge hormonal transformation. I was overwhelmed with guilt regarding both children, feeling torn between them, and in the meanwhile, not taking as good care of myself as I needed. I missed Ethan terribly, but wanted to be fair to Aria as well. My feelings of guilt have not gone away, BUT I have come to accept that we’re doing the best we can with the situation we’ve been given.

That feeling of acceptance of the situation took a while. And in the beginning of his stay, all of those feelings I just mentioned were distracting me from the matter at hand – providing Ethan with the best, most loving care possible.

I listened to what the doctors said about my son and his care. I asked questions, but I didn’t question. I didn’t want to upset any of the nurses since they were with my son, caring for him, much more than I was.

Then issues began to transpire. I was not happy with some of the directions that were being taken regarding his care.

One of the issues that concerned us (and still does) was consistent care and the passing on of information: The doctors work on rotations. The nurses work in shifts. The residents are there on a monthly basis. We found that each doctor has their own approach, and plans would change constantly. People are human, sometimes details get lost when passed from one person to the next, and messages were not necessarily being passed on from nurse to nurse effectively.

What this means is that our son was being passed from one hand to the next, and not receiving the same care. So he became inconsistent. For example, eating really well one day, and not the next. Growth and eating healthy are very crucial parts to a baby's well-being. My husband and I were the only consistency in his life, and we couldn’t be there all the time.

Time was passing. I wasn’t at the stage where I could see what was going on clearly. And I couldn’t understand why my son was still there or what was keeping him there. What still had to be done to get him home?

I really didn’t know who to speak with about the issues, and it was hard for me to put a handle on what was bothering me exactly. I was more emotional than effective. So I would speak with the nurses. I developed relationships with many of them. And as I spoke to them more and more – and spent more and more time at the NICU, I began learning how things work around there.

One of the nurses suggested that we ask for a family meeting to discuss a plan for discharge with the doctor. My husband took a day off from work. We brought Aria with us. And we sat with a team of doctors involved in his care, along with a nurse Ethan had never seen before and one of the residents.

We asked about the plan for discharge, or the plan for getting him ready for discharge. The doctors seemed to have a different agenda for our meeting though. They wanted to talk about their search for an answer to the BIG question: Why did my son stop growing in utero at 26 weeks? Is there something else going on besides being a small, premature baby?

The doctors told us about a series of tests they had run and were going to run. And their theories as to what could be happening. And I was overwhelmed with emotions once again: Oh no, what are they going to tell me that my son has? I thought we were going to talk about my son coming home. I knew they were running tests, but I hadn’t given them much thought. (In the meanwhile, all of the tests have come back normal.)

It hit me a week after that meeting, after I had gotten hold of my emotions. If he has something, we'll deal with it. That's not keeping him in the NICU though. Right now, our focus and our main goal is to get him home. I had been distracted by other things rather than doing everything I can to get him discharged. My son needed me to be more involved. Like super duper, above and beyond involved. I needed to be clear-headed, understanding, prepared, smart and intuitive. I needed to speak up when I didn’t understand or was unsure of a treatment. I needed to be on top of things. I wanted to know about every test, every feeding, every prick, and every poop.

My husband and I began doing research. Asking questions. I began speaking to the doctor every day, and I still call the nurses several times a day to ask for updates. I started taking notes and tracking his progress. I wrote down the names of all the tests and asked for reports. I want to know EVERYTHING. I learned how they calculated certain measurements, and I began calculating them too. We complained to the NICU bosses regarding consistency in care, and sure enough, notes began appearing on our son’s crib with plans of care. And when something doesn’t go the way I think it should go or am confused about how it should go: I speak to the doctor, the nurse manager, or the patient relations representative (depending on the situation) and things get taken care of immediately.

I really don’t care if people like me or not. This is my son’s care we’re talking about. Yes, it is more effective if I approach practitioners in a user-friendly way, and I do my best to stay calm, clear, and understanding. That’s for sure. But that doesn’t mean that I have to go out of my way to please them if I see a problem either.

In the meanwhile, I have come to realize that the NICU staff – from the doctors to the nurses to the secretaries – really, really, really do care about our son’s well-being. And they will do whatever they can to help him. I know that for sure.

We’re all human. We all try our best. And our best might change at any given moment. And that’s why I’ve decided to become as clear as I can be of emotions that hold me back, and to transform into a warrior mom.

Twin delivery at 34 weeks – a mother’s intuition

I haven’t written in a while. A lot has been going on. Yes, that’s right. I have BIG news. Baby boy Ethan Joseph Busel and baby girl Aria Jordan Busel were born on May 11, 2011 at 9:23 and 9:24 am respectively.

And here’s why I haven’t written since April...

My pregnancy became complicated at around week 26. I am fine. Diabetes is fine. Actually, I saw my endocrinologist last week and he said, “Your diabetes is so well-controlled that you are on auto-pilot despite being completely pre-occupied.” My last A1C was 6.1, and my blood pressure and other tests are fantastic. Yay for me.

The kids, actually Ethan, were having problems though. Ethan’s placenta had negative Doppler flow, which means that blood and nutrients were flowing out rather than in. His growth stopped at week 26. He was born very small. I mean very, very, very small.

We were told he wouldn’t make it. And we had a decision to make: deliver early in an attempt to save him – putting them both at risk - or prolong the pregnancy as long as possible hopefully giving her a better chance. He would be at risk for survival no matter what, according to the doctors.

We were told the risks of delivering at different stages during the pregnancy. If we delivered anywhere before 32 weeks, they would both be at serious risk for brain, heart, and lung malfunctions.

The day we found out that Ethan might not make it, we cried. Oh did we ever cry. The decision was really difficult. When should we deliver? What is the best date so they both make it? Healthy???

After a lot of deliberation and meetings with doctors, multiple ultrasounds, we decided to push the pregnancy as long as possible. Lior wanted to deliver at 32 weeks. The high risk doctor tried to push us to 36 weeks. My woman’s/mother’s intuition told me 34.

I was still questioning that little voice I heard until my OB/GYN told me 34 as well. Confirming my feeling with his medical experience. A c-section was scheduled.

The little voice was really a whisper, a very clear whisper. I heard it during one of our doctors' meetings at around week 28 or so. We were talking about our options for delivery. And I heard "34" loud and clear. I know when I hear a clear intuitive whisper because it makes me stop in my tracks. I normally would have been hysterically crying, but instead, I stopped, listened, and even smiled. I knew I had been given guidance. I believe it was divine guidance, but who knows.

I was monitored very closely for the last eight weeks of my pregnancy. I went for ultrasounds two to three days a week – never knowing if there would be two heartbeats or not, but believing with all my heart and soul that there was.

And Ethan kept kicking. I could feel him moving. Actually I felt him moving more than she. He would twist and turn – pushing on my ribs, pressing on my bladder. She flittered a bit, but nothing painful. I actually started worrying about her too. The ultrasounds were reassuring me about her, and every kick and every push was a God send regarding him. It reassured me that he was going to be okay, and I felt deeply with all my heart that he would make it.

The weeks passed. My doctors decided to send me out on maternity leave – to lower the risk of delivering early.

May 11th rolled around, and I went into the c-section a nervous wreck. Not only because of the surgery, but also because of the outcome. What would happen? Will he be okay? Will she be okay? Will I be okay? Honestly, the experience was traumatic, yet thrilling. I was about to become a mom! But this wasn’t at all how I imagined it being.

The doctor was in the midst of injecting the epidural (painful), when the NICU (Newborn Intensive Care Unit) doctor came over to me, with her piercing blue eyes and said, “You know your son might not make it?”

“Yes, I know,” I growled.

Sheesh, what timing. I couldn’t kick her because of the effects of the epidural. They probably plan it that way. She was wearing a Jewish star around her neck though, and I couldn’t help but feel that God was on our side. I always felt that he would make it. I just knew.

I was laid down on the surgical table. Lior was brought into the room. He held my hand reassuring me that I was okay. “Remember to breathe,” he said. I asked him to say that despite not having to push through labor pains since breathing reminds me to be present, rather than making up worry-wart stories in my head.

The operating room was packed like Grand Central Station. There were five person teams of doctors and nurses for each baby, and also the anesthesiologist, three residents, the OB/GYN, the high risk doctor, OR nurses, my husband...oh yeah and me.

The operation had begun. I will spare you the details. But basically after a lot of freaking out on my part, and a lot of Lior calming me down, I heard the doctor sing, “I feel your son kicking me.”

A minute or two later (maybe it was even seconds), I heard crying. Crying. Yes, I heard crying. “That’s your son,” I heard the doctor say.

And a minute later, I heard another cry. And that was Aria. Everyone had expected her to come out first, but sure enough, he kicked his way to the front of the line.

The nurses brought both of them over for me to see. The proof was there. I am a mom of two beautiful children. And they’re both alive, breathing, and yes, crying. Lior went to check: Five fingers and five toes on each hand and foot. Forty altogether.

The room cleared out. The babies were taken to the NICU. They needed special treatment since they were premature. I was stitched up and to make a long story short, I went to work on recovering from the c-section.

Aria was in the NICU for 10 days. She was sent home on May 22. She has been an absolute joy, and it’s a load of fun watching her discover the world.

Ethan is still there. He had more work ahead of him on the road to recovery, and now we’re waiting for the finishing touches. He’s doing really well and I’m impressed with how much he’s overcome. I don’t know when he’s coming home since they tell you a day or two before the discharge. He has been there for 10 weeks though, and needless to say, it’s been a complicated and emotional journey. (more on that in future blogs)

I’ve been living in uncertainty for quite some time, and needless to say, it’s been rough. A roller coaster ride of emotions.

I am fortunate to have the support and love of family and friends. Our entire family has also been supported by a wonderful team of doctors, nurses, and professionals along the way. I have also been utilizing my usual mix of yoga, walks, journaling on gratitude and about whatever is bothering me. And honestly, I have also had sleepless nights, mad researching on the internet, lots of calls to the NICU for updates, meetings with doctors, and countless crying sessions. I’ve been allowing myself to feel whatever I need/want to feel.

But I’m okay.

This experience has been a huge lesson for me in coping with uncertainty, being present, and listening to my intuition. I have learned to put a lot of trust in the Universe’s grand design, clearing my head of the worries and fears, and listening for those whispers of clarity. I can’t say that I’ve mastered the lesson yet, but I’m working on it.

It’s a lesson in letting go of control and trusting that the Universe is on our side. As a friend of mine wrote me the other day, forces are constantly in motion around the Universe working within our best interests. Our lesson is to relinquish ourselves to that and trust it. As Eckhart Tolle said in “A New Earth,” once we become at peace with uncertainty, once we accept it and embrace presence, the world opens. And it has. I have experienced it time and time again throughout my life and most recently, with the birth of my son and daughter.

So here I am living in a holding pattern - waiting for my son to heal. But hey, he’s alive. He’s overcome SO MUCH and improves every day! He smiles, observes, learns, sleeps, plays, eats, and grows. And perhaps because I heard a whisper and listened, perhaps because I trusted the Universe, perhaps because of love, positive energy and prayer, and perhaps because of science and quality medical care. Whatever the reason: I feel at peace with the decision we made, and the Universe rewarded us with two wonderful miracles.

I’m ready to start writing again. See you next Monday.

Inspirations (and questions) on parenting as a diabetic

Among the many things on my mind at 30 weeks of pregnancy with Type 1 diabetes is what our method of parenting will be.

I think about how I was raised, and how I would like to adopt the traditions and values that my parents passed onto me – while of course creating some of our own. I’ve also been observing all of my friends with kids, taking mental notes, and quite frankly have been very impressed with them. I was also a teacher once upon a time, and learned a bit about classroom management and child/adolescent psychology, and so I’m sure those lessons will come into play as well – such as consistency, how to give constructive feedback, the stages of childhood development, and so on.

I know that we will have our own style that will probably involve building on our own experiences and beliefs mixed with learning combined with winging it.

And of course, there’s the diabetes. There is no doubt in my mind that diabetes will play an instrumental role in how I parent – whether I’m aware of it or not. It simply changes how you do things, your outlook, how you manage life.

As a T1 diabetic, I’m very structured on a day to day basis. Although my heart is that of a creative free spirit, I eat and check my sugars at certain times of the day. That’s just how it is. I had to learn to balance the demands of life with my true passions at a young age, and to be honest still struggle with it sometimes. I’ve also learned to roll with the punches. You never know when you may have a low or a high sugar, and you just have to deal with it no matter where you are or what you are doing. The good news is that I handle crisis situations pretty well – in my own way.

There are also the physical demands of diabetes that will come into play when having twins. What do I do if I have a low sugar while I’m changing or feeding them? My response: I need to handle my low sugar first. Kind of like how on an airplane the safety directions advise you to place the oxygen mask on yourself first and then on your child. It won’t be much help to the child if I’m passed out.

Another issue that comes with living with diabetes is dependence vs. independence. Type 1 diabetics are insulin-dependent. We need insulin to live. I’ve had diabetes since the age of 3, and so I was incredibly dependent on my parents not only for what normal kids are dependent on their parents for – but also for my insulin shots. Without them, I wouldn’t have survived. I was also dependent on my parents to help me when I experienced low blood sugars, to think about the types of foods I was eating, to make sure I stayed active, to check for ketones when my sugar was high and to dose the right amount of insulin.

At the same, diabetics crave independence. So many of us want so badly to take care of ourselves, show people that we can achieve anything, and not let the diabetes define us.

I know that all of this will influence how I raise the twins. I’m sure of it.

What I don’t know is what it’s like to not have diabetes. But I believe that the lessons of living with diabetes will help make me more aware of and sensitive to whatever our children experience and go through in life.

Mothers want everything to be good for their children. Life isn’t always like that though. I’m sure my parents weren’t thrilled or jumping for joy when they learned that I have diabetes. So it’s my job as a parent to not resist when bad things happen, and instead, help all of us accept that this is what life has dealt. This is a part of the journey. Now let’s see how we can make it the best it can be.

There are so many ways to do this, and my favorites typically involve learning lessons. Using the challenges in life as an opportunity.

True happiness involves discomfort, according to Harvard psychology professor Tal Ben Shachar in his book, Even Happier. “We should remember that going through difficult times can augment our capacity for pleasure: it keeps us from taking pleasure for granted, reminds us to be grateful for all the large and small pleasures in our lives. Being grateful in this way can itself be a source of real meaning and pleasure.” (p. 26)

I definitely agree with this approach, and it’s worked for me. Many people suppress when bad things happen, while I find that it helps to face it, let it out and learn from it. And then I’m able to let go.

Here’s another strategy: I was listening to an inspirational talk show called Positive Living on ION network the other day. A life coach, whose name I can’t recall, advised that when faced with challenges in our lives, observe what questions you are asking.

For example, if you are afraid that your place of employment is downsizing and that you may be a part of it, you may find yourself asking, “What am I going to do if I’m laid off?” “How will I afford things?” As a result of that way of thinking, your brain focuses on coming up with those kinds of answers. You may start thinking of unemployment or worse. And then that energy brings about those results.

Instead, he advised asking, “How can I make the most of the situation?” “What can I do to keep my job?” And then your brain will creatively think of ways to deal with those questions instead, and bring that energy to the situation.

I found this to be a real aha moment for me. It’s all in the phrasing of the question.

As I sit here thinking about becoming a parent, I ask myself, “How can I be the best parent I can be?” “How can I provide my kids with the best life possible?” “How can I manage motherhood and diabetes?” “How can I bring the positive aspects of having diabetes to my kids?”

And the answers will come.

It’s third trimester time

We’ve entered the home stretch. I am 29 weeks pregnant – with twins and Type 1 diabetes and still at ‘advanced maternal age’ – and I entered the third trimester a week or so ago at 28 weeks. Forty weeks is considered full term, and that means that I’m in the middle of my seventh month.

To be honest, I started feeling the effects of the third trimester at around week 25 or 26, when my blood sugars began to fluctuate - totally expected for a Type 1 diabetic according to my doctors. I am still monitoring, dosing insulin accordingly, etc., only now I need a lot more insulin, and blood sugar control is not as easy as it had been in the first and second trimesters when my blood sugars were stellar. But considering I’m a Type 1 diabetic, both my doctor and I are pleased with my blood sugar readings.

Other changes that have been developing: It’s harder to move around. I walk – or rather waddle – at a snail’s pace. I can’t see my toes when I’m standing. I got a cut on my ankle, which I can’t see and have to contort every which way to get to, and I have been asking Lior to put band-aids on it for me. And why must everything fall on the floor? I am dropping things left and right, and it’s getting harder for me to squat down to pick stuff up. I am pretty good at squatting from all of my yoga, but between the weight in my tummy and newfound lack of balance, it’s getting a wee bit harder to do that successfully.

Sleep just isn’t the same. I miss a really good night’s sleep. I wake up really early, and for whatever reason, I’m not tired in the evenings. And so I don’t fall asleep until later than usual. I miss my solid eight hours.

The most popular question I get asked during the third trimester is: Do you feel movement? This question always gets me, especially when it’s from people I hardly know. And what if I didn’t? Am I going to tell you about it? But yes, the babies are moving. Actually, I hardly feel the girl because she’s nestled further back, but I go through so many ultrasounds that I know that she’s right on track. The boy is very active. He kicks and jabs, and my whole tummy jolts during one of his many soccer goal attempts. He’s clearly in training for the US National Soccer Team because I don’t know why else he would kick so hard in there.

The fun parts: We’ve picked names. I’m not going to tell you what they are though. Shhh…it’s bad luck to tell you before they’re born. Isn’t that such a tease? We’ve been decorating the babies’ room. Well, now there’s just a bunch of boxes sitting there. But we’ve painted, and Lior installed lighting over the weekend. The better to see them during 3 am feedings.

Here’s the deal: No one really prepares you for all that’s involved with getting pregnant. Actually, I’m not sure that you can prepare someone for all of this. There are so many emotional and physical ups and downs. I’ve never worried so much in my entire life and been so excited at the same time. I can’t wait to meet them, but at the same time, I’m freaking out about how we’re going to handle it all. I feel like a slow-moving cow with a very big belly, but at the same time, everyone’s telling me how great I look. People see a pregnant lady and are blinded by the pregnancy glow and stop seeing clearly.

Pregnancy is like the ultimate dichotomy, the yin and yang of life, opposing forces, a Star Wars flick where good and evil battle it out. Okay, maybe I'm going a bit too far here with my metaphors.

But life isn’t black or white. Just as nothing in life is either good or bad. Everything is just what it is. So perhaps pregnancy is the ultimate lesson in acceptance and being present?

I know I feel good physically – even during this third trimester – when I’m doing yoga or sitting in the sun listening to the birds chirp. I’ve been calling both my therapy. I know that I feel my best emotionally when I’m writing. Not so coincidentally, these are also my most present moments, when I'm in the zone.

In instructor Shiva Rea’s prenatal yoga video, which I have been doing a couple times a week, she says that pregnancy and motherhood are the ultimate opportunity to practice presence. She continues by saying that being a parent is the ultimate lesson in presence - with your children. Yoga, in her view, prepares you for that. I agree with her.

Seems to me that the process of pregnancy is preparation for what’s to come, not only in getting the nursery together, picking names, and learning all you need to know to care for an infant. The third trimester is a chance to practice presence under physical and emotional duress. And I know I feel better when I do.

The lesson is figuring out when you feel present and then incorporating it into your day as often as you can. You'll be grateful you did.

An intuitive approach to feeding and sleeping schedules for twins

At this point in my pregnancy (26 weeks), I’ve started thinking about those first few months after the twins are born. I have a number of people who are very close to me who have twins – both family and friends - who have all highly, let me say this again HIGHLY, recommended scheduling the twins’ feedings.

They say that it is better for everyone – mom and the babies. It will hopefully provide me with some semblance of emotional and physical sanity. The babies are known to sleep better, eat better, and be less fussy. I have heard multiple stories of twins (no pun intended) who sleep through the night at 12 weeks because of the schedule.

So I have been hard at work learning about the schedule. Turns out that there is a whole philosophy behind this, and I have a feeling that this topic will come up again in my blogs – especially once I have experience with it.

To be honest, as I’ve been learning, the whole scheduling thing has been kind of stressing me out. What I understood from everyone who has experience with it is that you don’t feed the kids on demand. You feed them certain amounts at certain times of the day, and with multiples, you urge them to eat together. Otherwise, mom – in this case soon to be me – will never have a moment of much-needed rest, i.e., sanity.

Baby nurses have told me that newborns eat every two to three hours in the beginning. If those twins aren’t eating and sleeping at the same time….well, I’m sure you can figure out what that might be like.

But at the same time, I have understood from a lot of people – including the same baby nurses – that the babies themselves let you know what their schedule is – which seems on the surface to be contrary to the other pieces that I’ve been told.

After lots of talking, I totally get that the schedule is key. I’m a fan of the concept, and I want to learn about it and implement it.

I’m at the point now where I want someone to tell me exactly what to do: “Feeding #1 is at 7 am; feeding #2 is at 10 am” and so on. But I have to wait. I’ve been told that the hospital will create the schedule, which has made me feel better.

Besides the not knowing where to turn to learn about the schedule, I have also been stressed about not wanting the schedule to be messed up. I’ve met with different childcare professionals who are not into the schedule. They believe in feeding when the baby is hungry. But they assure me that they will follow what we ask.

I want to be sure to get this right so that I don’t wind up torturing these two little ones and starving them to death, but at the same time, keep the schedule so that it works for all of us. Healthy mom, healthy babies, happy everyone.

As for the first stressor: the how. The answer totally hit me just the morning. I’m on a schedule. A diabetic schedule. Please, I’ve been living the schedule all of my life. Check sugars at these times, eat at those times, and take insulin at such and such times. I’m so scheduled that it’s hard for me to not be on a schedule. (And I do sleep well.) The doctors tell me when to check my sugars and what to do. I’ve got this one down.

I suppose the difference is that soon I’ll be responsible for two little helpless beings’ schedules. That’s the freaky part. My wonderful friends gave me the best advice they could give: You’ll just know. Intuitively.

Intuition is a beautiful thing. Probably the smartest advice out there. I need to step out of my own way. Calm those crazy thoughts. Get out of my head. And just breathe. And then let the real me – the intuitive me – do the talking.

The second stressor: Dependent on others to abide by my wishes. Even freakier.
Here we go with that “letting go” lesson again….I can’t control others. I need to just trust that they will listen and do what’s best.

Pregnant or not, diabetic or not – we all get sucked into stressful thoughts. They’re fear based. And the best thing for all of us is to get out of our own heads. Be present and wisdom will follow. Have some faith and trust.

We can all heed the advice of mothers around the world – and just trust our intuition no matter what the circumstance. I’ll let you know how it goes…

Type 1 diabetes at 25 weeks of pregnancy

I’ve reached that point in my pregnancy where my fabulous blood sugar readings have started climbing.

I’m 25 weeks pregnant with twins, and my sugars began to rise about a week or two ago. I’ve been told that this is totally normal and expected at this point in a diabetic pregnancy, according to my doctor and all the research articles on pregnancy and diabetes that I’ve come across. (Please note: I am not a trained medical professional. I am a Type 1 diabetic sharing my experiences. Be sure to speak with a doctor for medical consultation on all matters related to diabetes.)

My first and second trimesters have been marked by fabulous controls. According to all those same doctors and articles, low sugars are quite typical during the first trimester, and I had many of those. I could eat a cup of straight cane sugar, and my blood sugars would not rise past 80. Now, I eat a celery stick, and my sugar goes to 180.

Alright, maybe I’m exaggerating a tiny bit. But seriously, my last A1C was 5.8. I don’t remember ever seeing an A1C like that in over 36 years of living with diabetes!

And now I am struggling to bring down 180s, 160s, 190s, 210s….

Correcting sugars like mad. Faxing food and blood sugar logs to my doc on a weekly basis (more or less). Raising my basal rates, and giving myself more insulin at meal time. Changing my pump more often – going from every three days now to every 2.5 days (expecting, according to the doctors, that I’ll have to change it to every 2 days in another couple of weeks).

And, worrying about the health of the babies as a result of all this.

The only thing I can do is to continue what I’m doing – checking sugars, taking my insulin in a systematic, informed way, keeping track of it all, heeding the advice of my doctors. I eat healthy more often than not, and I exercise regularly. I do my best to keep stress levels low, and I try to rest with my feet up often (very necessary for me at this point in twin pregnancy).

The worrying part is the part that doesn’t help. I know this – logically. But sometimes, I can’t help but worry a little bit. Usually someone is there to make me feel better and lend an encouraging ear. And sometimes I am a total worrywart in my own little out of control tailspin world. Worrying is a totally normal emotion. I am becoming a mother, right?

I know it doesn’t help me though.

And that’s when I remind myself: The best thing I can do is accept that managing blood sugar fluctuations is a part of being pregnant with Type 1 diabetes. And act accordingly. The rest is out of my control.

I don’t know if the babies will be affected or not. I’ll actually probably never know.

By the way, the high risk doctor told me that high blood sugars typically affect the babies when you have sugars that continuously read 250 to 300, or higher. That does make me feel better since I don’t have those kinds of sugars.

So is all this worry for nothing? My experience in life has been that worrying usually is just that – for nothing. Especially worrying over things that are totally out of our control.

I’ve been told that motherhood is a lesson in letting go. How about motherhood with Type 1 diabetes and twins? I guess it’s time to learn the lesson. You can only do what you can do. Life does the rest.

Forgetful pregnancy moments

I read about why women become forgetful (and clumsy) during pregnancy in the absolutely amazing bestseller What to Expect When You are Expecting a few months ago, but for the life of me, I can’t remember why forgetfulness in pregnancy happens.

I know that something happens to your brain cells, probably something about hormones and the needs of the growing babies. All of the books and articles I’ve been reading insist that a pregnant woman’s brain cells do come back eventually (although people I’ve spoken to say otherwise). Forgetfulness during pregnancy, according to all the research, is completely normal.

In the meanwhile, my forgetfulness and truly dunce moments have been entertaining many, especially my husband Lior. So I thought I’d share a few of these funny moments with you in this week’s blog. Oh and by the way, I have been thinking about writing this topic for a week, but couldn’t remember any of the stories. Lior graciously reminded me of them this morning.

One of his favorites: The celery story.

We were preparing to go for a long car ride (don’t remember to where), and I was preparing to pack a lunch. I had a whole long lengthy discussion with Lior about what to pack. For whatever reason, the decision of what to pack to eat was really stressing me out that morning. He suggested cutting up some veggies like carrots and celery and adding a few cherry tomatoes, etc. Put them in a Ziploc bag making it handy for the ride.

I pulled out the celery, washed and cleaned them. I pulled out a cutting board and knife. And I started chopping them like crazy – like a celery psycho killer – as though I was preparing a salad. Wait not just a salad, but a super duper chopped salad.

I was in my own la la land. I may have even been humming a tune in my head. Lior looks at me, after discussing in detail moments before about how I would cut the celery for snacking, and he started laughing hysterically. I looked down at the cutting board, and let out an “Oh….”

I wound up having salad, and it tasted great.

Another one of his favorite pregnancy brain dead moments: The baby registry list and the car ride with my in-laws.

We went to create a baby registry a few weekends ago with my in-laws who were visiting. I had been reading all the books about what to buy and what not to buy. What’s a waste of money, what the best brands are, what you totally need and can’t live without, and so on. I have been attached to the latest editions of Baby Bargains and Consumer Reports and making lists.

I made the list of all lists. No other list could possibly rise above this list. I had everything on it. What we are registering for, and what we are buying ourselves. The types, brands, how many of each, fabric types, what to watch out for, what’s safe and what isn’t. You name it, it’s on this list.

We went to the store and registered for a whole slew of things. But there was still more to do. Please note: It takes HOURS to register for two babies. HOURS…DAYS…WEEKS….

And so I wrote what we still had to do on the list.

We packed ourselves up into the car to head home after a very, very long day. We were all exhausted. My father-in-law even took a nap at the store. I had the registry package and folder the store gave us in hand, receipts for the cribs we had ordered, a few shopping bags, and my purse. And as we sat down in the car, I decided to look at what was left on the list.

But I couldn’t find it!

I looked in my purse and in all the bags I had beside my feet. I looked in the folder the store gave us. But I could not find that darned list.

“Stop the car! Stop the car! We need to go back to the store!” I freaked out to Lior.

My in-laws started freaking out too, “What happened? What’s wrong?”

Bedlam had hit the car. “I can’t find my list! I can’t find my list! Let me check the trunk. Maybe it's there with the other things.” (We had done quite a bit of shopping that day.) I was freaking out by the thought of having to re-create that list from scratch. Days of research, all of that time spent, and all gone in an instant.

“We have to go back to the store,” I bellowed.

No one was in the mood for that. Lior was like, “Calm down….” He pulled the car into the nearest parking area. I got out of the car to check the trunk for my precious list.

“Ophir, I found it….” I heard Lior holler from the driver’s seat.

“You found it?” I headed back toward the car, “Where was it?” I hadn't even opened the trunk yet!

“You were sitting on it,” Lior was laughing.

Less entertaining forgetful pregnancy moments:

I forgot to pack bread in my lunch bag one day for work. I have also forgotten to take home my lunch bag. And I’ve also forgotten my Tupperware and dishes on the counter at work. To which I said to Lior, “Where has all our Tupperware disappeared to?” I looked at the shelves at work and lo and behold, there they were!

I forgot to bolus for insulin one morning. My sugar went so high! Woosh! Thankfully I wear a pump, and was able to correct it, which took that entire morning to fix. I kicked myself all morning for that one.

The countless times that I’ve dropped things, bumped into things….I’m sure there are many more moments that I simply can’t remember and Lior wasn’t there…

Pregnancy forgetfulness can be funny, and it can also be exasperating. I have been keeping lists for the really important stuff. And thankfully, I’m doing that, or I might get into some trouble.

But all in all, it’s par for the course of pregnancy, and they make for fun stories. And quite frankly, it’s helping me realize just how little some things really are in life, how mundane, and how easy it can be to let go when you don’t let small thoughts invade your mind. How worked up I can get over a list that won’t even be important in five months from now or Tupperware that can be replaced or found.

Don’t sweat the small stuff. Because they’re usually gone in an instant, especially when you don’t remember them.

A member of the pregnancy club

People who had hardly paid any attention to me, or had never spoken with me, are suddenly my best friends (okay, slight exaggeration). There are those people in my life who had never said more than a hello to me, and are now blowing me kisses. Strangers in stores have full length discussions with me concerning breast feeding and due dates. Friends and relatives that I haven’t spoken with in 15 or 20 years are suddenly calling, e-mailing, and contacting me with their experiences, advice, concerns….and of course congratulations.

I have entered the pregnancy club - or otherwise known as the ‘people who have children’ club.

I had no idea that I wasn’t a member of this exclusive club over the years. I knew I didn’t have children. I’m not completely oblivious. I guess I just didn’t notice that there was an actual club. That people would treat me differently. I noticed that I connected with some people and not with others. Totally natural, right? I never really thought that all I had to do was get pregnant and suddenly people would want to speak with me. Go figure.

I have my theories as to why:

1. People love feeling wise, and they love sharing their viewpoints, advice, and experiences in the world of children. It’s a chance for people to share of themselves.

2. Babies are just so cute, so innocent and pure, so untainted by the shenanigans of life. There’s a small window of opportunity for us jaded folks to tap into it, experience the joys of a new life, and enjoy its vibe. Before they grow up and enter the “mine” phase – or as Eckhart Tolle calls it in “A New Earth” – the developing ego.

3. Getting excited about pregnancy and babies is a way for people to feel connected. We are all connected on this planet – every single one of us is a being on this Earth. We all feel love, sadness, disappointment, gratitude. We are all going to die one day, and we all feel our bodies’ strengths and weaknesses. Sometimes this is hard to see and feel because we become encumbered by our differences. Bringing life into this world is a tangible way for people to feel connected with the other. People all over the world have babies – no matter what race, religion, or political ideology. Isn’t that nice?

Now that I have entered the club, I can’t help but ask myself: If I wasn’t pregnant, would you be talking to me? What about the people who aren’t “in the club”? Some people judge them. I know that Oprah has been badgered for years for not having children or getting married. Others feel pity for those without kids.

And then others, which I hope I’m a part of, accept that everyone has their own journey in life, their own experiences, and their own set of lessons to learn.

I say: Let’s do away with the club mentality – meaning, where someone has to be in the club in order to connect with them.

It’s fun to share about pregnancy and having children. Absolutely! I’m happy to be re-connecting with folks that I haven’t spoken with in years. I don’t want to dissuade people from sharing. My basic point is that although it’s fun to connect with people on things we have in common, it’s also great to thrive in our differences.

We are all connected. We’re all humans on this Earth - with emotions, feelings, hopes, and dreams. We all have a lot to share and wisdom to offer. We’re all grasping for the joys of life in our own way. So let’s listen to each other and learn.

Twin pregnancy and the things people say that fill our heads

People love to share their experiences with pregnancy – giving advice, tips, and sharing their own traumatic stories. Some of it is highly constructive and positive, and some of it just isn’t.

Like did you hear the one about how someone’s rib was bruised from their child’s kicking in the third trimester? There’s something about pregnancy – and especially a twin pregnancy – that makes people feel very comfortable asking and talking about incredibly private things, and sometimes un-constructive things.

I have been finding that the experience is a true test in how I listen to others. And then what I do with it.

Here’s a popular question: Did you get IVF? Or the gentler version: Do twins run in your family? Either one of those two questions are usually asked when you first let people know that you are pregnant. I’m amazed at how people switch quickly from, “Wow, congratulations!” to basically asking how we made our babies. Uh, none of your business. I’ve come up with some fabulous responses...I have yet to use them though...I was actually prepared for that question, and answer honestly, despite wanting to be a real smart ass about it.

Everyone’s also an expert - not only on child bearing, but also on pregnancy and child rearing. I do appreciate much of the advice, but I decided early on that I can’t possibly listen to everybody. It can make any pregnant lady crazy. I read a lot and listen to those I trust, but both Lior and I will learn for ourselves when the time comes. People have been having babies for centuries, people. We can handle it. (Yes, I know it’s not about us.)

Do you know how many people have randomly informed me about the chances of delivering early with twins? I’m talking about people I barely know, and I can’t tell you what their intentions are in telling me this. But I just know when the comment doesn’t feel right.

Here’s the statistics that my high risk doctor told me: 60% of twin pregnancies deliver at 37 weeks and beyond, 30% deliver between 32 and 36 weeks, 5% between 28 and 32 weeks, and 2% between weeks 24 and 28.

So if the chances of delivering on time are at 60%, why do so many people talk about those that are early? Chances are higher that they will deliver on time and healthy. I want to focus on that.

The delivering early talk can be toxic when spoken with negative intention. I believe that people are trying to be helpful, most of the time. But I do feel strongly that talking about early delivery just fills at least this pregnant lady's head with unnecessary worries and bad energy.

I’m aiming for 38 weeks. I know we’re going to make it. That is the energy that I want to put out there for the pregnancy and these twins. If I were to think about delivering early, then I also believe that I will create the energy for it to happen.

This may sound like nonsense to some of you. But it works for me. Their delivery date is pretty much out of my control. But I can control how I monitor my blood sugars, what I eat and how much I eat, exercise within doctors’ guidelines....and how I think. I’m aiming for thoughts that create a healthy pregnancy. And it’s been working so far.

The next time you see a woman pregnant with a single, twins, triplets, or more, remember that filling her with positive energy will bring more positive energy to this world by helping her pregnancy go more smoothly. She needs, I need, all the positive support we can get!