How to talk to kids about the Orlando shooting: 5 musts

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Categories Anger, Community, Fear, Grief, How Do The Moms Do It, Mental Health, Older Children, Parenting, Talking to Kids1 Comment

I felt like I was falling. My immediate reaction to learning of Sunday morning’s Orlando tragedy was visceral. I felt my stomach and heart drop before my brain could catch up to put words to my feelings. Grief. Anger. Fear. Above all, confusion. How could someone be so evil? Why would anyone bring a gun to a place of joy?

I quickly confirmed that everyone I knew who had even the most remote possibility of being at the scene of the massacre was safe. They were. My entire focus then turned to my daughters. How was I going to talk to my kids about the Orlando shooting?

Like so many parents, I’ve wrestled over whether to talk to my children about the horrific murders committed by a single deranged man. My daughters are 10. They interact with other children during the day. If they were going to learn about the shooting, I wanted them to learn about it from me, in a way that was honest, age appropriate, and non-sensationalist. I thought long and hard about how I would talk to my kids about the Orlando shooting specifically and mass shooting in general.

The way our morning went Monday, I only got around to talking to one kid. When I picked the kids up from camp, she was the one to encourage me to talk to her sister about the Orlando tragedy.

“Something really bad happened yesterday,” I started.

“49 dead? 53 injured?” she interrupted.

It turns out that she had read about the tragedy in Orlando on the news ticker. There was sports programming playing on TVs at the day’s field trip destination.

I wished I had spoken to her before she’d read those details, but she didn’t seem too traumatized. I got the impression that my willingness to discuss the matter did a lot to counter the children’s fear of this act of terrorism. Their confusion mirrored mine.

My willingness to discuss #Orlando with my kids did a lot to calm their fear. Click To Tweet

My daughters are as goofy and energetic as 10-year-olds come, but they are unusually mature. They, like me, feel empowered by information. You know your children better than anyone. If they are at a stage where they still think that everything that happens is because of or about them, they may be too immature to handle the news. Protect them from the television, radio, newspapers, and unthinking adults. You need to decide for your family, for each individual child, how to talk to them about the Orlando tragedy.

I knew that my daughters needed to talk this horrific event through. I explained that a very wrong man went to a place that is specifically intended to be a safe place for gay people to meet and hang out.

“That’s a great idea,” my daughter interjected. “It’s nice that there’s a place where gay people can know that all the not gay people will be nice to them.”

Obviously, my kids were already familiar with the concept of homosexuality. I told them that boys could marry boys and girls girls when they were toddlers. They’ve since noticed a number of lesbian and gay couples among my friends and met kids with two moms.

“But,” my little girl continued, “that makes the bad man even worse. Because he picked a place that’s nice to be mean.”

She was right, I told her. There were five massive ideas at play in the Orlando shooting, as I saw it. She had already identified two: terrorism and homophobia. She brought up 9/11 and we talked about the parallels between the two events for a bit.

It was then easy to segue into the religion part of the discussion. I told my daughter that a lot of people associate terrorism with Islam. A lot of our Muslim friends and family feared hatred from people who painted all Muslims with a single terrorist brush. I confessed that a small part of my choice to keep my married name after divorce was to avoid a recognizably Muslim name.

“But mostly to match us?” she asked. Yes, I mostly kept my married name to match my kids.

“But Mom,” my daughter realized out loud, “Christian people do bad things sometimes, but I’m not a bad person and I’m Christian.”

She was spot on. “What does it mean to be Christian?” I prompted. “If someone hurts a bunch of people, is that following Jesus’ example?”

“No,” she realized, “and he wasn’t very good at being Muslim either.”

Whenever I can, I let my children draw their own conclusions. I learn far more from them than they do from me.

“That’s three things, mom. You said there were five.”

The other two things were mental health and gun ownership. We have depression in the family, so we’ve talked in the past about chemical imbalances in the brain. I told my daughter that there was probably something very very wrong with the shooter’s brain for hmm to even imagine what he had done, much less follow through.

Next, we briefly touched on gun rights. Her father is a soldier, so she’s familiar with responsible gun ownership. I told her that my personal belief is that guns should be treated like cars, with training, licensing, and insurance required.

It was a great conversation, although one I wish we didn’t have occasion for.

“I understand the five things,” my thoughtful child told me, “but I still didn’t understand.”

I told her the truth. I didn’t understand either. No one would ever understand. There was nothing sensible, logical, or comprehensible about what this man had done. The families who are smaller today will never understand why their loved ones will never come home. The big question – WHY? – would always be out there confusing us all.

My daughter accepted my answer. She was old enough to get that this story wasn’t going to wrap up neatly. She asked me to spend the night in her room, because she was sad. We snuggled up in shared sadness, confusion, and complete love and trust.

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Me Time in the Morning

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Categories Balance, Divorce, Feeling Overwhelmed, Making Time for Me, Mental Health, Perspective, Preschoolers, Routines, Single Parenting, Theme Week, Time Management2 Comments

Yep, I’m one of those people. I love mornings. I love the calm anticipation that it often holds, and I love the feeling of getting a head start on my day before everyone else. I know that mornings have fallen out of favor with a lot of people recently, but I’m here to tell you about some of the reasons I get up early to have some time to myself every day.

Waking before your kids may be the way to find time for yourself.

First a little background: I’m a single mother with twin girls who are currently 3.5 years old. I am a full time music teacher in a public school and also run my own online business. I am also an introvert and a homebody. Because of all of these factors, having some quiet time for myself is essential to my ability to function with a positive attitude each day. There are 3 reasons why I think having some “me time” each morning makes a huge difference for me: 1) my brain has time to process everything from the previous day, 2) I can think through and prepare for the upcoming day’s responsibilities, and 3) I can start the day feeling more in control.

1. My brain has time to process

I have a lot of stress in my life. I work in a Title I school with a lot of behavior problems. Communication with the girls’ father is full of conflict. My girls are both 3 years old. Did I mention I have two 3 year old’s? Often when I try to deal with problems that come up during the day before going to sleep, I don’t respond well. When I give my body rest and my brain a chance to process everything, I usually find a much better perspective or solution the next morning. Getting up early for some time to myself, rather than staying up after the girls go to bed, allows me to deal with life’s ups and downs in a healthier way.

2. I can prepare for the day ahead

I know that, in theory, this can be done at night. And if you are a night owl rather than an early bird, it is probably completely effective for you to get ready for the next day the night before. But if I try to get ready the night before, I always miss something. My brain and body are shut down by the time I get the girls in bed- there is no organized or logical thinking happening! By getting up early enough, I have time to think through my responsibilities for the day and make sure I am ready before the girls wake up. For me at least, even when I am able to effectively prepare the night before, I find that I don’t remember everything I had set up by the next morning. Doing everything that morning gives me a better chance of remembering what I had planned the rest of the day.

3. I feel more in control

There’s something about setting an alarm, and waking up when it goes off, that makes me feel more successful. Maybe just that small success of getting out of bed while others are still sleeping is enough to make me feel like I am capable of following through on my decisions. Having time to sit with a cup of coffee, reflect on the previous day and the day ahead, and calmly prepare for the day helps me to feel like I am in control of my life and that I am equipped to deal with whatever challenges may come my way.

Are you a night owl or an early bird? Do you take time for yourself in the mornings? I really believe that taking that time, even when I would rather sleep in sometimes, makes a big difference in my ability to handle everything life throws my way. What do your mornings look like? Share your thoughts in the comments below.


Making Time for Me - a series on mothers finding time for themselves in the middle of the insanity of parenting and lifeFrom August 31 to September 4, 2015, How Do You Do It? is running a series on “me time” for mothers: why we need it, how we make it, what we do with it. Find the full list of posts on the theme week page.

Have you blogged about mommy time on your own blog before? Are you inspired to do so now? Link your posts at our theme week link up! We’ll do our best to share them on Facebook, Pinterest, and Twitter with the hashtag #metime.

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Do These Five Things for Yourself to Be a Better Mom

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Categories Making Time for Me, Mental Health, Mommy Issues, Perspective1 Comment

On any given day, between the hours of 7:30 am and 7:30 pm, my home is a lively place. It buzzes and hums with the mischief of three busy two-year-olds discovering their world.

I rush about the house, vainly attempting to keep up with them. I toss in a load of laundry here, break up a squabble over there, and generally try to keep my children happy and alive, and my house clean habitable.

At the end of the day, I sit down to dinner with my husband and reconnect. The time between bedtime for the kids and bedtime for the grown-ups is ours.

While I love time spent with my family, it is not always easy for me to find time for myself. I’ve learned that if I want to cultivate my own happiness, I have to carve that time out of a day that seems to already be whittled down to nothing.

Over the past two years of raising triplets, I have struggled to create space for my own needs. During the first year of the their lives, I almost lost myself entirely. As time passed, I slowly began to realize that the more I focus on myself, the more I am able to be a better wife to my husband and a better mother to my children.

While I’m nowhere near perfect, I have found a balance that works for me right now. I hope that these five ideas can help you to do the same.

Be a better mom by taking time for yourself.

Define self-care for yourself. Self-care means different things to different people. If you can’t identify what it is that fills your emotional bucket, it won’t matter how much time you set aside for yourself. You will never be satisfied. For me, self-care means finding silence to read or write. Seems simple enough, but finding peace in a home with three toddlers is not always easy. I have to work for it.

For you, self-care may mean spending time with friends, exercising, or cooking. It may be an annual beach vacation or volunteering at an animal shelter. It doesn’t matter what it is, just make sure it suits you and that you are a happier person because of it.

Identify your best time of day. In Gretchen Rubin’s book “Better Than Before” she talks about the concept of larks and owls. People that prefer to wake early and those who would rather stay up late. It’s more of a continuum than a black or white concept.

I happen to be a lark, so getting up very early, while not always easy, is refreshing to me. In the evenings, I struggle to even make a coherent sentence after about 9:00. In the morning, I can get the same amount done about half the time. Also, I love drinking a cup of coffee that is piping hot to the last sip without having to toss it in the microwave.

Waking early isn’t for everyone. I am married to an owl, and he is sluggish and foggy in the mornings no matter how much sleep he gets. Everyone is different; it is just a matter of finding the time when you are your best and capitalizing on it.

Don’t waste your time on things you think you should be doing. This one was critical for me. The first year, I had a long list of things I thought I should be doing. I loved the thought of scrapbooking my children’s lives and pureeing their baby food. But, I constantly felt guilty about the untouched scrapbooking supplies sitting in my office. And, because I get no joy from cooking, I felt like making my own baby food was sucking all of my free time away.

Trying to fit these things into my already overcrowded schedule was making me unhappy. When I decided to focus on the essentials, the things that made me truly happy, managing my time became much easier and I felt more fulfilled.

Protect your time. Once you find the activity and time that work for you, protect it. When others ask you favors, or ask you to skip your obligation to yourself to help them out, find the strength to say no. It is so easy to treat this time as a luxury rather than a necessity. Remember how important you are and how important it is to your family that you are your best self.

Don’t be too hard on yourself. Occasionally, a couple of days will slip by when I will hit the snooze alarm in favor of allowing myself a little more rest. That’s ok. Remember, this time is for you and you don’t have to be perfect. In fact, I don’t think there is such a thing. The best you can do is good enough.

 


Making Time for Me - a series on mothers finding time for themselves in the middle of the insanity of parenting and lifeFrom August 31 to September 4, 2015, How Do You Do It? is running a series on “me time” for mothers: why we need it, how we make it, what we do with it. Find the full list of posts on the theme week page.

Have you blogged about mommy time on your own blog before? Are you inspired to do so now? Link your posts at our theme week link up! We’ll do our best to share them on Facebook, Pinterest, and Twitter with the hashtag #metime.

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Mommy’s Workout Time

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Categories Childcare, Health, Lifestyle, Making Time for Me, ParentingTags 2 Comments

I work in IT and spend my day at a desk. Like many people, I have to exercise for both physical and mental health. I’m not an athlete by any stretch of the imagination. Without an effort to get myself moving, I wouldn’t get any exercise beyond that provided by housework and playing with the kids.

Structured exercise classes are what work best for me. When my kids were younger, I was reasonably good at using exercise DVDs to keep myself moving, but I’ve since become a member at a local gym. At a bare minimum, I make it to Saturday morning full-body weight class. In a great week, I might attend 4 workout classes spread over 3 days.

When I had infants and toddlers, it didn’t even occur to me that going to a gym was an option. The gym at work didn’t provide childcare and it never occurred to me that other gyms might. I was pleasantly surprised that the local gym had dropoff childcare for children of all ages, included in the base membership price. I haven’t seen the infant room, but I’ve really liked the indoor playscape made available to younger children and the video games, air hockey, and craft centres in the room for older kids.

In addition to having plenty to do while I’m exercising, my daughters are also learning that it’s important for adult women to take care of our bodies and health. I’m sure they see how much my energy suffers on the rare week that we have to skip a gym visit. They’re such active children now, but I hope the example of mommy’s workout will stay with them if they pursue more sedentary careers in the future.


Making Time for Me - a series on mothers finding time for themselves in the middle of the insanity of parenting and lifeFrom August 31 to September 4, 2015, How Do You Do It? is running a series on “me time” for mothers: why we need it, how we make it, what we do with it. Find the full list of posts on the theme week page.

Have you blogged about mommy time on your own blog before? Are you inspired to do so now? Link your posts at our theme week link up! We’ll do our best to share them on Facebook, Pinterest, and Twitter with the hashtag #metime.

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Selective Intrauterine Growth Restriction (sIUGR)

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Categories Medical, Pregnancy, Science of MultiplesTags Leave a comment

Multiple pregnancies are categorized as “high risk” for a reason. It’s not just a matter of the limited room in our womb squishing our babies up against each other. The human female body is optimized to gestate one baby. When you add in more, there’s a chance that not all resources will end up being distributed evenly.

If you’re new to How Do You Do It? and didn’t come here specifically to learn about sIUGR, I encourage you to read through the amazing birth stories on this site. The MoMs of HDYDI have experienced the full range of multiple pregnancy possibilities, from full-term to micropreemie, from extended bedrest to working right to the end, from natural childbirth to C-section. Don’t be scared by this one set of potential complications. Most of us have perfectly healthy and happy children today!

Meet Jenn

Meet Jenn, HDYDI‘s newest contributor. One of her twin daughters was diagnosed with Selective Intrauterine Growth Restriction. We’ll explain exactly what that is after Jenn tells her story.

 My name is Jenn, and I’m a 32 year old mom of a sweet 4 year old boy and 5 month identical twin girls. This is my story about our experience with Selective Intrauterine Growth Restriction.

At 9 weeks pregnant, I found out we were expecting monozygotic/diamniotic (identical) twins. After the initial shock wore off (let’s be honest, I’m not sure the shock and wonder ever wear off!), I dove into books and the Internet to educate myself as much as possible as to what to expect for the next 7 months. I read about a million complications – preterm labour, how large I was going to get, and about Twin to Twin Transfusion Syndrome (TTTS).

Being a worrier to begin with, I began to go over all the things that could go wrong, but most of all, I feared my babies would be affected by TTTS. That fear became real at my 21 week OB appointment. After a fairly easy pregnancy to that point, my OB declared there was a problem. “They are identical, they should be the same size” he said. My Twin B was two weeks behind her sister in size.

“This isn’t good, I think you have TTTS”.

The next thing we knew, my OB was sending us four hours away to the top TTTS hospital in our province, and we were being prepared for surgery. My whole world caved in. I remember calling my mom in tears, telling her how I was so scared to lose my girls. I didn’t know what to think or do. When we arrived we were given an extensive ultrasound – over two hours long.

As we sat down to discuss the results with the doctor, he said that we had no signs of TTTS. I was confused. He then said our itty bitty Baby B had Selective Intrauterine Growth Restriction. What? I hadn’t read about that during my research.

He explained sIUGR is an issue that can arise only in pregnancies where the babies share a placenta. Then, he drew us a diagram showing us that Baby B had a marginal cord insertion, which means her umbilical cord wasn’t centrally located, instead being off to one side. This means she was only being supported by 25% of the placenta whereas her sister was getting the other 75%.

The doctor (who was a Maternal Fetal Medicine Specialist or MFM) said that I would need to be referred to my local MFM for weekly monitoring of growth and cord flow, but to expect a 36 week delivery by Caesarian section. The MFM also explained to me that many identical twins experience varying degrees of sIUGR due to cord placement, and that most sIUGR babies can catch up after birth.

I have to say I breathed a huge sigh of relief, considering we were expecting TTTS surgery that day. We headed home and started our weekly monitoring with my new MFM. He made sure to check UA umbilical artery (UA) and middle cerebral (MCA) artery dopplers, fluid levels, growth and bladder diameters at each ultrasound to stay on top of potential complications. At that point, we were watching UA cord flow to ensure it didn’t reverse, which would be cause for immediate delivery.

Every week was a rollercoaster. One week we would have intermittent/absent flow and our little would have only gained a few grams. Other weeks we had perfect cord flow and she was gaining beautifully. The most important thing I could hold on to was the advice I received on a Facebook support group for sIUGR/IUGR babies. I was advised that as long as there was SOME growth each week, and no reverse flow, we were okay.

I began to research more things I could do to help my babies grow. I read about a high protein diet so I made sure to take in as much as I could. Every week I either cried with worry, or felt cautiously optimistic.

Finally, as I approached 35 weeks, my sIUGR twin slowly stopped growing, and it was time to discuss induction. I had wanted to try for a VBAC, which my MFM was cautiously willing to try if I wanted to. However, after discussing the possible, and very real, risks involving a VBAC and my SIUGR twin, it was decided to schedule a C-section.

I made it to my scheduled date at 36.4 weeks, but oh, how I wished I could keep them in a little longer to grow a little bigger. When the MFM delivered my Twin A, she was a healthy weight of 5.6lbs. When my sIUGR twin was delivered, I remember the doctors saying how tiny she was, and the MFM said to me “I’m glad we got her out when we did”. She was 3.14lbs and the sweetest tiniest little pumpkin ever.

They whisked her off to the NICU, but assured me she was perfectly fine and would only be there 2-3 days max – she just needed to get her weight up before going home. She was alert, and nursing better than her “big” sister and we couldn’t wait to get them both home.

Unfortunately, she picked up a severe blood infection from an IV she received in the NICU, and her 3 day stay ended up being a scary 17 days full of close calls and a LOT of tears. Fast forward (and boy does time fast forward with babies) to today, where our sweet sIUGR twin Charlie is five months old. At three months, she was tipping the scales at over 11lbs, and her twin Addie was over 13lbs.

Charlie is perfect in every way, and although the doctors say she will likely always be “petite” she has overcome everything she’s been through like the little warrior she is. The smallest babies are always the fiercest. Charlie was followed by a dietician for the first two months of her life as she aimed to make her place on the growth charts, but she’s now above the 10th percentile and growing on her own perfect little curve.

We are very lucky.

sIUGR has many levels of severity, and our situation could have been much more difficult. Educating yourself is key. My OB didn’t know what it was and assumed it was TTTS. In fact, too many health professionals aren’t privy to the details of sIUGR and TTTS. I’m thankful to have been sent away for more testing, because ultimately I ended up being well taken care of by a MFM who knew what to look for and how to monitor a sIUGR pregnancy.

The number one thing I recommend to a mommy who has been diagnosed with sIUGR is to find a support group full of other moms who have been, or are going through, the same thing you are. They are often very knowledgable on what questions you should be asking and what kind of care you should be getting. I’m so thankful for those moms and the constant information and reassurance they offered.

There is nothing I did or didn’t do to cause sIUGR, and there was nothing I could do to fix or help the situation. That, of course, doesn’t help the guilt or helplessness you feel as a mommy. This is just another curveball in the crazy journey that is being a mom of multiples! Our babies aren’t the only warriors here after all!

What Is sIUGR?

Multiples and singletons alike, some babies are affected by a condition called intrauterine growth restriction (IUGR). This term describes a baby who is growing significantly slower than expected in the womb, one who is smaller than 90% of babies of the same gestational age (the time that has passed since conception). Causes of IUGR can be related to the placenta, through which the baby receives nutrition and oxygen, maternal health, or chromosomal issues. Selective intrauterine growth restriction (sIUGR) is a specific type of IUGR that only occurs in identical multiple pregnancies. The “selective” part means that not all babies’ regions of the placenta are impacted.

sIUGR occurs in about 10% of monochorionic pregnancies. Those of us with mono/mono or mono/di twins are at risk. (For more information on these terms and general information about twin pregnancies, please see our primer.) In sIUGR, one twin is getting so little of his or her share of the placenta that it is impacting growth. To be blunt, that twin is malnourished and possibly under-oxygenated. This is particularly obvious when comparing the sIUGR twin to his or her wombmate, who, all things being equal, should be about the same size.

MoMs, we are masters of guilt. If your baby has been diagnosed with sIUGR, it is not your fault. These things just happen. The fact that you have a diagnosis means that you’re doing what you should for your children. You’re getting regular medical care. Your doctors can help get your baby healthy.

How Does sIUGR Develop?

Background

Let’s make sure we’re all familiar with the basic terms.

Basic terminology to describe babies in the womb. Your baby receives nutrition through the umbilical cord from the placenta attached to your womb.

Let’s now look more closely at the placenta. The placenta is your babies’ anchor and food source. It is the place where mom’s cells and babies’ cells meet. Mom’s blood vessels bring in her oxygenated and nutrition-laden blood, which transfer their goodies to babies’ blood in babies’ blood vessels. On the way out, Mom’s blood picks up babies’ waste so that her body can get rid of it for them.

The blood vessels that carry blood to and from the baby in utero embed in the placenta to get oxygen and nutrition from mom.

Umbilical Cord Insertion

Ideally, the umbilical cord attaches to the placenta near its center, allowing plenty of room for blood vessels to spread out and maximize the connections between Mom and baby. However, this becomes more complicated when there’s more that one umbilical attaching to a shared placenta.

In most cases, as with Sadia’s daughters, each twin’s umbilical cord is close enough to the middle to claim plenty of placental real estate for his or her blood vessels. Complications can arise when the placenta is shared unevenly.

TTTS and sIUGR are complications that can arise when identical twins (or more) share a placenta unevenly.

 

sIUGR and TTTS

In rare cases, as with Jenn’s daughters, one umbilical cord attaches off to the side and doesn’t get its fair share. The other umbilical cord’s placement is still optimal. Only the undernourished baby is negatively affected, his or her growth limited by the nutrition making it through. This is sIUGR, a condition often initially misdiagnosed as TTTS.

In about 15% of twins who share a placenta, one twin gets far more than his or her share of the placenta while the other gets far less. This is called Twin-to-Twin Transfusion syndrome, or TTTS. In effect, the donor twin is giving a transfusion of the blood to the recipient twin. One baby ends up overfed and the other undernourished, which is dangerous for both babies.

An initial diagnosis of TTTS may be modified to one of sIUGR if observation of the possible donor twin finds that there’s nothing to be concerned about when it comes to cord insertion.

Surgery

TTTS surgery involves using a laser to block blood vessels carrying blood between the twins. Its benefit is primarily to the twin who is receiving too much blood. Medicine has not yet advanced to the point where surgery is available to make a greater blood supply available to the donor twin or to a baby diagnosed with sIUGR. Frequent ultrasound monitoring is the only real option, allowing your doctor to determine whether it’s safer for your babies to be delivered pre-term than to continue to be nourished in utero by the placenta.

If you have any questions about sIUGR or TTTS, please let us know. We’ll do our best to answer, although neither of us is a medical professional. You can find out much more about TTTS on the TTTS Foundation website.

 

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Cleft Awareness

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Categories Congenital Anomaly, Medical, Parenting, Special Needs38 Comments

July is National Cleft and Craniofacial Awareness and Prevention Month! Find more #cleftawareness photos and stories on Facebook!

Sweet Pea’s Story

On a beautiful Colorado day in June of 2012, my heart was racing with anticipation and excitement. Our long awaited second child was about to make his entry into the world! When he was born, he made no sound because his cord was wrapped around his neck…twice. They removed it and within moments, he was screaming his head off. It was like music to my ears! Moments later, the doctor informed me that our son, our Sweet Pea, was born with a cleft palate. While we knew that this was a possibility as I was born with one as well, it was still a blow. I had walked this road, and I knew of the struggles that he would face.

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He was admitted to the NICU for observation due to his difficult delivery, but ended up staying for 3 days because he needed oxygen. He went home with oxygen, and remained on it for 13 weeks. During that time, feeding became a major issue. Our son was born without any of his soft palate, and was missing some of his hard palate as well. When people hear that we had cleft palates, they often say, “wow, you look so great!” While I appreciate the compliment, I realize that there is a lack of knowledge about clefts and choose to take these occurrences as a gift…an opportunity to raise awareness about clefts. For Sweet Pea and I, we do not have complete clefts, meaning our lips were not impacted by our cleft (see the bottom left picture in the chart below). While cosmetics were not an issue, feeding, breathing, speaking and orthodontics are.

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Because his cleft eliminated his entire soft palate, he was never able to latch to breastfeed. This was a huge blow to me and contributed to my post-partum depression. At only 6 weeks old, Sweet Pea was diagnosed with failure to thrive. We tried several methods of feeding him before we found the Haberman feeder. It is now called the Medela Special Needs Feeder and just one costs about $30. Obviously, the ability to feed our son was priceless, but it was very challenging. If it weren’t for this awesome bottle, our little man would have gotten a peg tube to feed him.

haberman

Many children have their cleft palates closed around 6 months of age…unless they have a craniofacial anomaly that impacts their airway. Our son also has Crouzon Syndrome, which makes his midface small, therefore making his airway small. Because of this, we had to wait until he was 12 months old before closing his palate. It was a long, difficult road, but well worth it!

A cleft palate repair typically takes about 3 hours…P’s took 5.  It was the longest day of my life.  When the craniofacial surgeon came out, he told us it was the most difficult repair he has ever done, but he believed it was successful. Two years later, I can attest to that claim. So far, P has had three surgeries, and the only surgery on the horizon is replacing his ear tubes. Today his biggest challenge is speech, but he has an amazing speech therapist and he is a resilient guy. We will continue to have him monitored by his Cleft/Craniofacial Team on a yearly basis. While we cannot predict his future, we do have a good idea of what to expect from my own experiences.

My hope is that this post will raise awareness about clefts and craniofacial differences, and that it will encourage parents who are on this road too. As someone who was born with Crouzon Syndrome, Craniosynostosis, Chiari Malformation, and a cleft palate, I can say that I am thriving today. My son has taught me a lot about myself, how I deal with our birth defects and how I view myself and him as we walk this path.  He has taught me that I am his voice, his advocate and his cheerleader. Maybe he can teach others too?

Here are some links for further research and support:

Risk of Oral Clefts in Twins

CCA Guide to Understanding Cleft Lip and Palate

Cleft Palate Foundation

CCA Kids

Do you, or someone you love, have a cleft?

Would you like further information about cleft or craniofacial support and encouragement?

Comment below or send a message!

Sara is a mama of four children, two of them being surprise identical twin girls. She is happily married to the love of her life, stays home with her children and is currently homeschooling her oldest child. Most of her writing is centered around raising awareness about Crouzon Syndrome and cleft palates, advocating for your child, homeschooling and raising multiples. Find her blog at Confessions of an Outnumbered Mom.

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Multiples in the Womb – National Geographic documentary

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As if we needed any proof that our multiples are miracles, National Geographic has a wonderful documentary about the life of multiples in utero. See 4D ultrasound of siblings interacting before they’re even born.

The In the Womb series also includes a video entirely about identical twins in the womb, which we just loved. Do be aware that there’s a scene in both films with a silhouette of the act of conception that you may want to skip through if you haven’t had The Talk yet. There are also diagrams of male and female anatomy. You may want to watch it all the way through without kids at least once.

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Toddler Thursday: Getting the diagnosis…. Then (whew!) finding out it is wrong

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As a parent you will do anything to make sure your kids are safe and happy. With the first baby especially, you stress and worry and panic and wonder if you are ever going to do anything right. My oldest was an early talker, a very early talker and a late walker. I had always heard that you either talk or walk – that babies focused on one area of development at a time. She talked early and walked at 17 months. Perfectly reasonable and within “normal” ranges, so it is fine.

Fast forward to twins.

Again, I stressed, I worried and I wondered if I would ever get anything right. Don’t get me started on sleep. The twins are now 2 ¾ and we still have sleeping issues…. The boy girl twins, like my older daughter, were early talkers. And late walkers. Sidney walked at 17 months just like big sister. But Spencer did not. He did talk early but at 17 months was not walking. It is ok, he will get there. And at about 18 months he took 5 steps into my arms. And I cried and screamed and attacked him with kisses.

He did not walk again.

He did not even cruise.

At 19 months I emailed the pediatrician and said, “I know you are going to tell me not to worry but at 19 months Spencer is not walking yet”. Her reply was like a dart into my heart. “Maybe we need to get him evaluated.”

I called Birth-to-Three and after a scheduling nightmare I gave up and called the pediatric rehab center on my own. My mother-in-law came with me. Her job was to listen to everything I missed and hold my hand. She did great. Spencer did great. I did not. In my defense, I did not mesh well with the therapist. I am 100% positive she is very qualified and good at her job, but I constantly felt blamed. “If you don’t pick him up he will walk.” That comment had me in tears. And had Spencer in tears. I will never forget his baby arms reaching up for me and his baby screams while this (evil) woman tells me that he is not walking only because I pick him up.

The therapist would hold toys just out of his reach and try to force him to reach for them to build up him muscles. Spencer would give up and move to a different toy. And I don’t blame him. But she did recommend that he wear braces on his ankles.  So I consulted with the pediatrician before making that appointment. She laid Spencer on the exam table and moved/manipulated/rotated his legs. She called them “spaghetti legs”. She could move them in any direction. His muscle tone was low, but she did not think that was a huge cause of worry, he could build up the muscles.

But she saw something else in his legs. “Beth, I want him to see a pediatric neurologist, I think he may have Cerebral Palsy”. And that was all I heard. She did talk me down (ish). She reminded me that if he did have it, it was not the end of the world, it was not a brain tumor (ok, an extreme example but she had a point).

First step, ankle braces. So we made the appointment and Spencer was fitted with baby ankle braces. Everyone told me that these braces were a miracle and that the minute they were on, their baby walked.  Spencer did not. (In his defense they measures the braces wrong and needed to redo them so he wore the wrong ones for a week or so…) Slowly, slowly, he started taking baby steps. But he still preferred crawling or being carried.

And then, one day, with my heart in my throat, I watched my baby boy walk. Those tiny little dinosaur printed ankle braces changed our world. At 21 months, Spencer walked barefoot. He had full control, turned, pushed toys, carried toys. He was there. I tear up now remembering that day.

With my mother-in-law in tow, we took Spencer to the neurologist.

You know when you have those days where every detail sticks perfectly in your brain? That day was one of them. The neurologist pronounced my son (he actually evaluated both kids and pronounced them both) as “perfect”. He said Spencer did have low muscle tone but that he did not even need physical therapy or the braces. I kept him in the braces for a few more months anyway because I bought a new wider pair of shoes to accommodate them. When he sized up in shoes, he left the braces behind.

My gorgeous, amazing, funny, cuddly, little man is perfect. He runs (not well and not fast, but he gets places faster than walking). He might not be a soccer player or football player but that will mean less concussions, so I am good with it. And one day, while waiting for big sister’s school bus, he jumped up in the air. Both feet off the group, jumped into the air. My baby boy. I have never been so proud.

Really, when he plays with his friends you would never know what we went through in the spring of 2014. We still have some work to do though. He does not like stairs and prefers to be carried, especially when he is tired. When we hold hands on the stairs, he turns his foot inward and we want to work on that.   When he moves to preschool, he will need to be able to walk down a long staircase to the playground and that staircase does worry me. But we will take it all day by day, step by step and now jump by jump.

As a mom you would do anything for your kids, and if Spencer did have Cerebral Palsy, we would have researched and become the experts at CP. It was only a few months. And in the grand scheme of things, it was nothing. But it was also everything.

I would check on him at night and put my hand on his back and watch him breathe and stroke his cheek and wonder if he would be able to walk without braces, if his peers would be cruel, how a disability might affect him and our family. We are so blessed that we don’t have to worry about these things. But if I ever do, I know that my support system is strong and I want to publicly tell everyone how fabulous the “how do you do it” group is. Because they got me through the beginning. They were a huge help in getting me from the emotional stage to the logical, research nerd stage. You need the emotional part. You need to cry when you get news like this, but you need to hit that research stage hard as well.

Our lives are “normal” now (or as normal as life with toddler twins can be). When I take the twins down the stairs, I hold hands and lead them down one by one and that is our normal. I help Spencer turn his foot on the stairs and that is normal for us. But when he does not want to come inside, I chase after him and now that is normal too. And even while I am chasing after him, I know how blessed I am to have a baby boy who can run away from me, as long as he never ever runs into the street!

 

Beth is known as mommy by a 6 year old and boy-girl twins who are almost 3.  She blogs about life, kids, and DIY, at Pickles in my Tea and in my Soup.

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The Twin Bond and School

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One twin starts to feel sick herself at the prospect of going to school while her sister stays home - and it's not for any lack of love for school! - How Do You Do It?

My daughter M stayed home from school today.

I’m pretty sure her immune system caved in the aftermath of Texas-wide high stakes standardized testing. It appears that M has more in common with me than just our tendency towards perfectionism and gift of the gab. During high school and college, I invariably started running a fever immediately after that last of my final exams, having seemingly exhausted all my immune energies. I did the same after completing my Masters thesis.

The STAAR tests left this bright and high-performing third grader sick from the stress.Even though both my daughters are excellent test-takers, and have aced all their practice tests, the general atmosphere of stress got the better of M. My daughters reported that in the past children have been sent home the day before the tests, after throwing up from the stress. As M wisely noted, when reporting to me that science and social studies were tabled in the run-up to these math and reading tests, “The STAAR is just getting in the way of my learning.” I’ve been looking forward to these tests being over so that the teachers can get back to teaching.

M woke herself up coughing on Saturday morning, following a delightful school field trip we attended the day before. She was most pathetic, but perked up over the next few hours once she had a good breakfast and plenty of fluids. She seemed well enough to attend her best friend’s birthday party that afternoon, but come bedtime, she was warm to the touch and complaining of aching limbs.

On Sunday, the cough continued and was joined by a runny nose. Although the fever stayed away, the headache she complained of in the evening made me decide to keep her home on Monday. Her twin J asked if she could stay home to care for her sister and I responded with a straightforward, “No.” Both J and I had runny noses, although Austin allergies could have very well been to blame. We got into a rather detailed conversation about the nonspecific immune system, which I enjoyed thoroughly. J complained of no other symptoms….

Then morning came. I asked J to get ready for school. She brushed her teeth and then remembered that M would be staying home. I saw the realization dawn on her face and she suddenly got very pale.

“I don’t feel good, Mommy. I have a headache and an everything ache and I think I have a fever.”

I checked J and felt nothing approaching a fever.

“But I’m sick, Mommy. I’m queasy. I don’t think I should go to school.”

I told J that if she continued to feel ill, she could ask to see the school nurse, who would call me if she needed to come home. I was quite certain, though, that her queasiness was more to do with being without her sister than fighting off a microbe. After all, it was she who felt most strongly that she needed to be in the same classroom as her twin.

“But mom,” she explained, quite patiently, “the nurse will only send me home if I have a fever. What if I need to come home with no fever?”

Against the protestations of the usually very reasonable J, I loaded both girls in the car to go to school. M sensibly suggested that we switch their booster locations so that J would be able to exit the car in the school drop-off lane without having to climb over her sister. For entirety of our short drive, J attempted to illustrate how genuinely ill she was, coughing dramatically and clutching her belly. I told her that I was completely convinced that both she and I were fighting off whatever had rendered M unwell, but that our immune systems were up to the task.

I was struck by the contrast between this and M’s reaction to J staying home sick earlier in the school year. M was concerned about her sister, of course, but it never occurred to her to miss school. She certainly didn’t feel ill at the thought.

As soon as we got home, M headed to the bathroom. She washed her hands and opened that door saying, “Hey J! Let’s play Webkinz…. Oh. I forgot.” She was able to laugh at her own forgetfulness. She and I spent much of the morning playing pretend with my “grandchildren”.

Mommy and daughter play pretend.
This is Balance, my grandson. Or perhaps grandcat. He knows he’s a cat and likes to groom and bunny-kick his siblings, but he can talk and is getting lessons in literary analysis from his 8-year-old mother.

M didn’t mention J again until after lunchtime, when she asked how many hours it had been since we dropped her off. When we picked J up from school, I asked her how she’d felt. She said that around 1 pm she had developed a headache and gone to see the nurse, who had told her she had no fever and recommended a good night’s sleep. J’s symptoms could very well be entirely physical, but I suspect a strong emotional component to them.

In the car, on the way home, the girls exchanged notes about their days. J told M that science was back on the menu at school and that they were working on the life cycle. M was disappointed to had missed the lesson. J had picked up M’s homework and was glad to report that they didn’t need to write a reading summary this week. M was disappointed. She loves homework and gave herself some today while she was home with me.

M told J about her day, and noted that she couldn’t find her tiny stuffed hippo, Oliver, anywhere. “Bad parenting!” J responded with a giggle. Oliver was located minutes after our return home, after I insisted that the girls’ dirty clothes make it inside, rather than in the general vicinity of, the laundry basket.

Today reminded me of the time when J, home with an ear infection around 6 months old, cried inconsolably for hours. I was convinced that she’d ruptured her eardrum, but the doctor saw evidence of nothing beyond run-of-the-mill ear infection. As soon as I picked M up from daycare, where I’d taken her to be able to focus on J, J calmed down. She had been missing her sister, not crying from pain.

J is very protective of her sister, at least when they’re not arguing. M adores J, but sees no reason to mother her, instead projecting her maternal instincts on her stuffed toys. Identical they may be, but their relationship isn’t particularly symmetrical. I don’t think it needs to be.

How do your twins react to being apart?

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Foodie Friday: Lunch Bag Hygiene

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Categories Feeding Older Children, Foodie Fridays, HealthTags 2 Comments

With rare exception, I pack my daughters’ school lunches. We usually use soft insulated lunch bags and all food inside it is either in a container or wrapped in cling wrap. Still, I worry about how germy the inside of the bag might get. I don’t imagine that my 8-year-olds are particularly cognizant of cross-contamination. I’m certain that they’ve picked at the meat in a sandwich and touched the inside of their lunch bags without thinking about it.

Lunch bag hygiene

I wash the bags as often as I do laundry, usually about every other day. On days that they don’t get a full wash, I still wipe all surfaces of the bag thoroughly with a disinfecting wipe, let it sit for 10 minutes, and then go back over it with a clean wet rag. I also have extra lunch bags for all of us to be sure that there are always enough clean ones available.

I’ve heard that a lot of people don’t wash their shopping bags because they simply don’t think about all the grime that builds up in there. Do folks treat their kids’ (and their own) lunch bags the same way?

Have you ever considered lunch bag hygiene?

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