#LoveWhoYouAre

When my daughter was diagnosed with an autoimmune disease when she was in the second grade, it was jolting. We had been managing her life threatening food allergies since she was an infant so adding something else on top of that ignited concern over how hard this would get for her.

We managed it and the life adjustments we had to make just became part of our everyday routine. No matter how hard life gets you figure out a way to make it work. It becomes second nature and you accept it. The waves of chronic pain come and go – we appreciate the times where her body isn’t attacking itself and we do the best we can to get through the hard times. Honestly, it becomes such a part of the process that we don’t even think of it anymore. It’s not a negative, it’s our way of life.

She has had an exceptional past year of minimal flare ups. We truly appreciate those times since we know they are temporary. I was especially thankful for the lack of major flare ups since she just started middle school.

She had hives and red splotches all over her face and arms when she got home from school last Wednesday. As I asked her about them they multiplied before my eyes. Initially we thought it was an allergic reaction. The hives turned into oozing blisters that she has never had before – this was something different. This was something new. We haven’t had anything new come up for many years.

My daughter is twelve years old and has this genuinely amazing ability to shine despite how hard it gets. She is full of awesomeness and isn’t a complainer. She is truly a sweet, kind and happy kid. She isn’t naturally selfish and because of that I think she lacks a personality trait that makes her obsess over herself or her looks. She would rather act a little crazy, silly and not take things seriously than be the girl who is checking herself out in the bathroom every passing period.

I don’t know how I got so lucky – she inspires me and has honestly helped me get through bed rest with her constant optimism. Sure, she has her moments of damaging my calm, trying to push limits and epic freaking eye rolls over chores – she is still a normal tween in most ways.

But, she is my shining ball of hope in this world and I hope her health hurdles won’t change her. With such a visible disability that has the ability to cause her so much pain she doesn’t even want to get out of bed I can understand if she became angry, resentful or bitter.

She embraces the fact that everyone is different in their own way, but I wasn’t sure how she would react this time. Being different is difficult at any age, but especially in middle school. Adding in social platforms like Instagram for teens and some of the potential drama that can come from it I wasn’t sure what she would do.

We always take pictures of her flare ups so we can document them. That may sound strange, but when you have a special needs child who has chronic illness record keeping is important. After I took a photo of her arm she asked if she could share it on Instagram. She said she didn’t want to hide what she really goes through and she wanted people to understand. She wasn’t looking for pity or sympathy… she just wanted to be real. I was so proud of her.

Love Who You Are

After a major flare up we usually spend many hours with her immunologist (and often other doctors) running blood work, xrays and trying to figure out what is happening. This was not easy with my modified bed rest limitations and my husband having to juggle his work from the lobby on his laptop – but, we made it happen. It isn’t an easy process and she get’s a lot of blood drawn at one time. I’ve always tried to make our long days at the hospital fun – as fun as it can be considering the circumstances. She shared some of it with her friends on Instagram and had a very upbeat personality about it. Again, I was very proud.

#LoveWhoYouAre

The night before Mother’s Day she insisted on baking me some goodies. No matter how terrible she feels she is still this thoughtful little human being who muscles through it and thinks of others. She was emotionally in a really good place – but there was something weighing on her. She was dealing with moments of sadness with how her face and skin looked. She was frustrated at how her body reacts. We talked about all of that and it was heart wrenching.

She decided to take a selfie and share it with her friends. My daughter doesn’t want to hide what she goes through and she doesn’t want to be ashamed of how she looks. She doesn’t see anything wrong with it and she knows she cannot control how others may see her and doesn’t care to. Proud doesn’t begin to explain how I felt in that moment.

She wrote -

Life is a struggle every day but nothing can keep me down. Despite my health I can still be happy with who I am and that’s just how I think the world should work.#carefree #beyourself #lovewhoyouare

#LoveWhoYouAre

I’m sure she will have many low moments with this. I’m sure I will be there to dry her tears over the years when she can’t focus on the positive. I’m sure she will go through phases of anger, bitterness or resentment…

But, right now I can take comfort knowing that she can have this perspective at such a young age. Right now I can know that she will be okay. Right now is what matters most and we will face those battles together in the future.

Right now, I hope each and every one of you can #lovewhoyouare and if not…

Live, laugh and ninja kick those obstacles out of the way until you do.

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Vanishing Preggo Belly

The picture on the left was taken TWO WEEKS AFTER the one on the right… Weird, right?

I’m going to start this out by saying – Pregnancy is freaking weird. 

A few weeks ago I came down with a horrible cold that turned into bronchitis. I can’t remember the last time I was that sick. I’m not even going to try to pretend it was easy or that I was maintaining well during those weeks. I was miserable. I couldn’t keep food down. My throat was on fire. I was coughing constantly with an ear ache of doom and pressure in my sinuses that made me want to go into a coma. It was gnarly.

During that time all I could think about was keeping my prenatals down, drinking protein/vitamin shakes and staying hydrated. I couldn’t take any real medicine, so I suffered through it.

My pregnancy complications have left me with a very sensitive abdomen that hurts with slight pressure. It hurts when I cough, sneeze and blow my nose. I had to learn to do all three of those with my ribs or down below my uterus and use every muscle I could except my abdomen. Do you realize how freaking weird and difficult that is?! I started to refer to my low cough technique as my “crotch cough”. At one point I had sneezed and coughed so much that my ribs felt like they broke.

We were also having a lovely heat wave in Southern California. Superfantastic fun times!

I’ve never worried about peeing myself like many pregnant women experience. I always took comfort in that. But, I was wearing a pad dealing with pee-leakage from my crotch coughing technique. To say I was a hot mess is an understatement. Why am I sharing this TMI-ness? One, because it’s funny (now) and I also have a point…

Earlier this week, when I reached 34 weeks to the day, and my belly bump went missing one morning. I’m not even shitting you… it was gone. In my groggy morning confusion I glanced around the bed as if my daughter crawled out of me during the night. I immediately panicked, got a glass of ice water and did fetal kicks. She was moving fine but it HURT. She was in there, obviously, but all I felt was baby and not much else. I’m not a pee-leaker. I know a lot of women pee-leak during pregnancy but I don’t. I was like a pee-leaky faucet all morning… or was it pee-leak?

With both of my previous births I had a slow and high leak. I had to have my water broken after I was induced. I wondered if my water broke? Well, I had some crazy watery discharge and I was leaking.

I know… TMI… but, with pregnancy, labor and birth there is no way to filter out the grossness properly!

34 weeks on the dot – the big final stretch milestone before she is considered full-term, after months of bed rest and I may have a high leak? Crapsticks.

A friend of mine stopped by and echoed my concern over my vanishing abdomen. I think her being concerned made me go from, “Isn’t this freaking weird?!” to “Oh shit!”.

I went in to the hospital to be monitored. I hate the hospital. I don’t know how most people feel about hospitals, but I have always had an unhealthy dislike for them. There are few things I use the word hate for. I avoid it as much as possible and only go in if absolutely necessary. This was one of those times.

My growing ninja girl checked out well. I wasn’t leaking when I went in and there were no signs of amniotic fluids or infection. The thing with a high and slow leak is if they can’t find the leakage when they test it there is no way to know. I had a slow high leak with my oldest and it took three visits for them to get a positive swab. At this point it’s a concern about infection and the membranes releasing the big waterfall of labor fluids.

The nurses commented on how healthy my daughter is and that she is VERY active. I know how active she is… she is constantly having a dance party up in there! We joked around about how feisty she is and it was all reassuring. I was able to go home.

But, what the crap happened to my belly bump?

I saw my OB the next day and the first thing she said was, “Oh this amazing feisty little problem child is continuing to keep us on our toes!” – I asked her if she thought all of this was super weird and she said, “For everyone else I would say yes but EVERYTHING is weird with you!”

I love that I can joke around with my doctor while dealing with all these weird situations. She is very professional and absolutely amazing, but she has the sense of humor I need.

We did an ultrasound and my daughter is more than fine. She’s continuing to measure larger than expected – There was concern that she had stopped growing and that is why my abdomen appeared to be smaller. She really hadn’t moved much at all since the last ultrasound just two weeks prior so she didn’t “drop” significantly. All the amniotic fluids levels were fine. Everything was fine. But, I was visibly smaller.

Basically, she’s trouble.

Conclusion? Who the hell knows! The important thing is that my daughter is healthy and so am I.

Was I peeing myself? Who the hell knows! Since I have no signs of infection and I haven’t continued to leak I can wait it out.

Am I going crazy?! Probably! But, dammit look at the picture and see the difference.

Could my baby ninja be taking that nickname a little too far and started vanishing training early?! Yes! See above comment about me going crazy.

I’m starting all of the lovely prelabor bodily weirdness. Yes, I know the process of bringing a baby into the world is natural, lovely, beautiful and all of those warm fuzzy awesomeness feelings – but, let’s be real… It’s also really gross!

I went from being diagnosed with some really frightening pregnancy complications and accepting a mandatory early c-section – getting stuck on bed rest – having things resolve themselves and being able to consider a vaginal birth – her being breeched and no more vaginal birth – then everything looked fan-freaking-tastic because she flipped and my abruption stopped – to … where the crap did my abdomen go and am I going to go into early preterm labor?

Tomorrow I will be 35 weeks. All I can think about is how I want to reach that 36 mark! I’m getting greedy but dammit this has been a long road and things are looking amazing. I want her to hold on a little longer before we welcome her into the world…

And maybe… just maaaaaybe… if she holds on for one more week I will find my freaking abdomen.

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Bed Rest Can Make You Crazy

by Leila on May 5, 2014

Bed Rest Makes You Crazy

These are things that I’ve learned while on bed rest so far…

When you are laying down and balancing objects in the air with your feet – because you may get so bored you do that – make sure you don’t use anything heavy just in case they accidentally fall on your face.

Everything on the ground that you can’t pick up bugs the shit out of you.

Dropping food on the floor can feel like the end of the world… and it is.

Your children may figure out if they all hide in another room, away from you, they can try to get away with things they aren’t supposed to be doing – like watching movies on their iPads or playing online games when they are supposed to be doing homework.

When you don’t text friends back (because you took a nap) for a long time after texting them something like, “I’m feeling really horrible today.” they may freak out a little and/or just show up at your house to make sure you are okay.

Said friends won’t think it’s as funny as you do when you laugh about it.

You aren’t as intimidating as a parent when you can’t get up from your bed rest position. Threatening to throw pillows just makes kids laugh. They will keep all heavy objects away from you… just in case.

Your internal dialog isn’t as internal as it once was. You start to have a deeper understanding of the relationship Tom Hanks had with “Wilson” in Castaway. Bed rest makes your bed, recliner, couch or hospital bed feel like your own secluded island.

Stacking small objects and balancing them on your forehead is really entertaining.

You may find yourself daydreaming about when you used to be able to drive and listen to music. Traffic seems like a welcome vacation from bed rest.

When/If you are able to leave your house for a short amount of time you totally understand why dogs stick their heads out the window. Also, people will look at you crazy when you imitate a happy dog in the passenger seat… and you do not care.

Pregnancy hormones and bed rest can create completely irrational angry reactions to simple things.

The silence of an empty house makes you crazy. The noise your amazing family creates in your house makes you crazy. Most days you are crazy.

When you are nesting and cannot physically do the things your hormonal body wants you to then you will make everyone in the house crazy.

Laying on your back and throwing objects in the air may, or may not, have the same results as balancing objects on your feet.

Some days are more difficult than others but, some days are still so awesome you forget you are on bedrest and why. Focusing on that makes you less stabby.

You may develop and allergy to people’s bullshit and drama.

For every really freaking mind boggling annoying thing your family does you find dozens of amazing things that they do to prevent you from plotting their doom.

Every milestone is a huge sigh of relief. Every week you get further along the easier it gets. Each and every damn day is cause of celebration… and no matter where you are on the timeline of bed rest you are further than you started.

If you are reading this because you are on bed rest just remember – You are doing the most important job you can right now… You are incubating your baby. Everything else doesn’t matter and don’t let any amount of frustration, annoyance, drama or negativity take away from that. There will be many low moments, and that is expected. It will be over before you know it…

Just don’t make a habit of balancing things on your feet and accidentally dropping them on your face.

It hurts.

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WTF Did You Say?! About Boobie Pillows

by Leila on May 4, 2014

WTF Did You Say?!

One night, my son said to me …

“I love snuggling with you, Mommy. Your heartbeat makes me happy and I like to listen to it. Its the best music. And your chest is soft and snugly like a fluffy pillow… Made of… boobies. Are there boobie pillows??? Those would be the best ever! Can I ask santa for boobie pillows!?”

And I almost died laughing.

Kids are funny.

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Funny Pregnancy Pics

Life is so unpredictable.

I’m the type of person that likes everything laid out. I like understanding all the possibilities so I can plan accordingly. Living in a constant state of unknowns is not easy for me. This has been the reality of my existence for the past few months.

My appointment this morning went better than expected, especially after the terrifying dog attack yesterday, my unexpected fetal monitoring in the hospital last week, and all the unknowns I’ve been dealing with. I was still with a lot of what ifs but even more relief.

Before we began the ultrasound I told my doctor that I was suspecting that she was now breech. She paused and said “I pretty much expect every possible worst case scenario to pop up with this pregnancy so I bet you are right! This one is going to be your troublemaker… she’s already keeping us on our toes…” she grinned at me and I told her if I was a betting woman I could have made some money on this. As soon as she touched the ultrasound probe toward my cervix we both saw feet and laughed. We seriously laughed a lot. I probably shouldn’t have laughed because it’s very serious stuff if she doesn’t turn. She was shaking her head and thanked me for having such a great sense of humor.

What else can I do? Honestly, the breech at 31 weeks is the least of my concern with everything else.

The biggest concern of vasa previa that was going to cause a mandatory early c-section between 34 – 36 weeks has been ruled out. It’s. Been. Ruled. OUT. The membranes that were exposed are not visible anymore. The blood flow in the umbilical cord is healthy. My placenta moving up which also caused no more membranes and/or umbilical cord to block my cervix. Oh and the placenta itself isn’t blocking my cervix either! I’m honestly not used to the small statistic of BEST case scenario working in my favor… it’s usually the opposite. I will freaking take this change, gladly!

At around twenty three weeks we thought I was going to deliver a micro preemie because of vasa previa and placenta previa. I was bleeding, contracting and showing all the signs. I was stuck on bed rest and dealing with all the scary possibilities. My cervix was completely covered with the placenta and umbilical cord and membranes. We looked at the scans and the progression was amazing to see… like the evolution of my pregnancy. It was truly the best possible scenario.

My doctor said “Normally, these two things being resolved naturally would mean life can go back to normal… but…”

Always a but…

I also have had a placental abruption (we don’t know how bad of one it is) and with my daughter being breeched, after my “she-hulk” moment, I have to continue to stay on modified bed rest. DOH.

However, the risk of a stillbirth have dropped significantly. The risk of my health has also dropped… though, with an abruption there is still a lot of concern but the vasa previa had a much higher mortality rate. It’s trading the lesser of two evils but I’m relieved.

What we do know right now is that she is very healthy. I’m losing weight but she is gaining again. She is measuring at approximately 4lbs and “seems very long”. She is a little bit bigger than expected at this point and that is a good thing compared to the last scan when she was showing to be very small.

It is also possible I may not have to get a c-section. It is also possible I may carry to full term without risks. Neither of these things were a possibility just a couple weeks ago. A couple weeks ago I was having to prepare with the possibility of having a premature daughter and hospital bed rest. Now, these things are not ruled out completely just yet but they aren’t mandatory. 

This has been the hardest few months of my life. Right now I’m so relieved I want to dance around like a happy drunken monkey. I can’t. But, I want to. 

For months I’ve been telling myself, “I’ve got this…” but now I’m really feeling it… and I have many amazing supportive people to thank through all of this.

I’m due on June 11th and have two months left. I’m hoping the final stretch of this pregnancy is smooth sailing. I was in a lot of pain today and still not feeling like my usual self, but I slept most of the day and woke up feeling like a huge weight was lifted off my shoulders.

It’s a damn good change of pace. I’m thankful for it.

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I’m an animal lover, but I am also very cautious of them. I’ve always taught my kids what to do if a dog attacks them or how to behave around dogs. It is a constant lesson that I try to reiterate to them. When we are hiking and camping they are all quizzed about the predatory animals in the area and how to avoid problems. As much as you prepare for a worst case scenario you don’t ever really expect it to happen with your kids… at least I didn’t.

Yesterday the kids had their normal routine of playing out front with friends and neighborhood kids. I got a recliner chair for the porch so I can sit outside with them while on bed rest. My friend and I were talking when my neighbor drove by and I saw he had a new dog. I noticed the dog right away because it started to bark at the kids and even tried to get out of the van by jumping out of the window. It kept its eyes on the kids, barking the whole time and my instincts told me this was going to be bad.

Everything happened fast…

I stood up and kept my eye on the van. As soon as my neighbor opened the door the dog bolted for the kids. I was running towards the kids at the same time and yelling at the top of my lungs before anyone really knew what was going on. The dog’s fur was standing up, it started biting at the kids who were trying to run away and it knocked my son off of his wiggle bike. I was only a couple steps away when he started to bite my son’s back. The dog backed away as soon as I got close but it was biting at me, barking and I was expecting it to attack me. I made noise. I grabbed my terrified six year old son in one arm to hold him up as high as I could and had his wiggle bike in the other hand. My daughter said it looked like I was going to start hitting the dog with the bike. The dog backed off when my neighbor finally got close but the dog never stopped his aggressive stance. My son was crying and I was still screaming at my neighbor. I don’t even know what was said but all I knew was that I was truly terrified and it was a feeling almost unknown to me.

It was all honestly a blur.

Thankfully my son’s injuries weren’t bad. He has scratches, bruising and a few puncture marks where you can see the dog bit him. I was grateful that I go there in time. I was relieved the dog didn’t go after the 17 month old toddler who was outside. I was happy no real harm had come to any of the kids. I cannot imagine how bad it could have been had I not reacted so quickly.

Instincts and adrenaline are a funny thing… I reacted before I even really knew what I was reacting to. My body has been in a lot of pain with this pregnancy and I usually can’t even get up off of the couch without wincing. I felt nothing during all of this.

When the adrenaline subsided and I stopped shaking that’s when my body started to let me know how bad of shape I felt I was in. My son was okay but I became aware of what this could have done to my unborn daughter because of all my complications. I thought I felt terror when I saw a dog going after my son… this was a different level of fear.

The more time that went on the more pain I felt. I had a check up in the morning and we had planned on doing an ultrasound. If any of the big scary signs came up I knew I needed to get to the hospital immediately. I did fetal kick counts. I changed positions every time I started to have contractions. I tried to hide it from the kids how bad I felt and I waited for any signs of distress. Besides all of the pain everything seemed to be mostly okay. My abdomen felt completely different. She had been transverse for a couple weeks and after the incident she was sitting really low. It was painful. I felt like I was being stabbed from the inside of my lower girly parts. I spent the night tossing and turning and worried that I was going to go into early labor or that the membranes from the vasa previa would rupture or that the placenta abruption was going to become worse. Every worst case scenario was running through my head.

When I’m in a moment of real vulnerability I usually withdraw. I usually just kind of hide out and wait for the smoke to clear. I was really shaken up and put it out there what happened. I’m thankful for all the friends and family who were thinking about us, giving support and offered help.

It helped. A lot.

I read a lot of the comments from my Facebook and texts to my son and it comforted him. I often have a lot of apprehension about sharing difficult things with my rad people online because it’s not attention driven. I was well into my pregnancy complications diagnosis and bed rest before I shared it with anyone outside of a small group of friends and family. What I share I usually try to have some kind of meaning – humor, inspiration, awareness or uh mostly humor. One thing that I have learned with my pregnancy complications that the great world of the interwebs is more than we often give it credit for… it is a place of amazing support and awesomeness. And to be totally cheesy – love. Sure, there is a lot of hate bashing and parent shaming that goes around but I try to tune out all that noise and focus on the things that don’t suck.

Basically, what I am trying to say is that you all rock and I’m thankful for it.

Though, I would really like a totally uneventful, uninteresting and BORING life until my baby ninja arrives! 

My son snuggled with me all night, he woke up a few times crying about dogs and I took comfort in knowing he was okay until my appointment in the morning…

Thankfully, everything with my baby and pregnancy was okay. (Continued on another post)

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Making the Most Out of Bed Rest

by Leila on March 20, 2014

Bonding Moments on Bed Rest

He insists on snuggling with his baby sister daily.

One of the biggest hurdles during bed rest has been not being able to bond with my family the way I am used to. It’s really hard at times, but we try our best to get through it.

I’m the type of Mom that would love to drop everything and go camping for the weekend.

I’m the Mom that will say, “Let’s go to an amusement park for dinner!”…

I’m the Mom that will gladly invite all of the kid’s friends over and have play dates, pool parties or let them run amok like wee little lunatics.

I’m temporarily the Mom on bed rest that can’t do any of the things that I am used to and I am thankful that our family has mostly adjusted well. 

The priority, of course, is keeping my daughter cooking as long as possible, but I need to also consider my other kids. I’ve learned to accept that things are different right now and look forward to when we can go back to our usual crazy life after she is born. I’ve researched and planned about three dozen camping trips already!

We bought a double recliner last week so I could be comfortable while having snuggle time with the kids or to be able to sit with them and help them with homework. It’s been one of the best purchases I’ve ever made and it’s helped bed rest significantly.

Bonding on Bed Rest

We read together more. We make origami. We draw, paint and make crafts. My six year old loves making journal books that we put together. We find ways to bond while taking life one day at a time in a more mellow setting. We talk about the summer often, I think it helps everyone look ahead.

I get drawings like these that make my heart melt – Does anyone else notice how terrified my son looks in his own drawing?

Bonding on Bed Rest

When I am on my feet and trying to take a prego belly selfie I get photobombed by my daughter… because she can’t help her hilarious self.

Prego belly selfie photobombed

For now, I’ve realized I’m the Mom that finds different ways to bond with my kids while not physically doing much on bed rest. That rocks just as much as us going on an adventure. Life, as always, is what you make of it… and I refuse to allow it to suck just because I can’t go out and do what I want with my family.

Live, laugh and ninja kick – and invest into a super comfy chair if you are able to while on bed rest.

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A Huge Pregnancy Bed Rest Milestone…

by Leila on March 19, 2014

Pregnancy Bed Rest Milestones

This pic was taken a few days ago after a really tough day.

My son always knows how to make things better.

We made it to the third freaking trimester!!!!

In early January I casually announced my pregnancy with an illustration of a big family with a baby ninja. In late January I found out I was having a girl and I was told to take it very easy until I had my follow up with my doctor. I was put on modified bed rest days later.

I started out with “just take it easy” modified bed rest to “don’t do much of anything” bed rest. I may end up on hospital bed rest if my symptoms don’t improve and each day my body is reminding me to do less and less. It’s frustrating but I am staying positive, keeping busy and taking it one day at a time.

When I started down this bed rest and pregnancy complications road I was 20 weeks. The statistics were scary at that time… if my daughter had been born at that point she would have had a less than 40% survival. I was losing blood, contracting and had all sorts of bad things going on. Bed rest has helped tame my angry uterus to keep my lil baby ninja cooking.

The first big goal was to make it to the third trimester. That seemed like a lifetime away and at times seemed impossible.

Today I said goodbye to my second trimester and welcomed the third. We are in the home stretch now. We are at a point where my daughter’s chances of survival are greater if she had to arrive today.

If I could dance right now I would be doing a super happy monkey dance while singing “Just keep cooking”.

I have no idea where the last 8 weeks have gone and I hope the next 8 fly by as smoothly. I’m so grateful to be where we are right now and surrounded by amazing and supportive people. Our world is full of awesomeness.

We got this, my baby girl… just keep cooking and Mommy and Daddy will see you soon. Don’t rush it, keep incubating and stop trying to play the congos on my cervix, please.

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Waiting for his sister

Except.

That word isn’t something you want to hear when you are at a prenatal checkup. It paralyzes you as it continues to echo in your ears.

Except… except… except…

There is no amount of delicate bedside manner that can make a blow like that any less painful.

It’s just one word. One freaking word that halts you.

Except would be an amazing word if it was followed up with something like…

Except, she’s wearing a ninja mask.

Except, you are further along than expected, she’s going to be delivered today healthy and painlessly. Yay, no more pregnancy!

Except, we found a million dollars while we were examining you. Here is your cash – cleaned up and sterilized of course.

Oh that last one painted a weird visual. Sorry, everyone.

In the fraction of a second all of this ran through my head as soon as my doctor said “Except…”

Yes, even the bit about the million dollars. My mind has strange coping mechanisms for stress.

I have placenta previa – which means the placenta is too close to my cervix and that makes natural delivery complicated – this is pretty common and not a big concern.

But… there is always a freaking but… in addition to that I also have vasa previa – which means there are vessels that aren’t in the right place, and are exposed, which means there is a possibility of them rupturing which puts my baby at risk. If there is a rupture I could lose her within minutes. That right there makes every other insignificant complaint I could have possibly had irrelevant.

Thankfully, this was all caught early and doesn’t pose a developmental concern. She can keep cooking until it’s time for a c-section (which I haven’t had one before) and be out of harms way so long as there isn’t a rupture. Vasa previa is very rare, hard to diagnose and not preventable. I feel like those three things are a common theme in my life when it comes to health hurdles my 11 year old daughter. When it is caught early that increases her chances of survival which is all I can focus on right now. As always, I have to make the most out of the cards I was dealt while trying not to freak out.

I’m on modified bed rest until, what feels like, the end of time and space. This isn’t easy for someone like me who is constantly going. I have to reduce my stress, which resulted in some massive purging of negative people and situations in my life that I refuse to waste energy on. I have had to become comfortable asking friends and family for help. I have to fight everything that is naturally me by slamming down my brakes and doing what is best for my daughter who needs to “Just keep cooking”. I’m at a point where the stress doesn’t consume me because I’ve had to force myself to get there. It’s not easy since I usually reduce my stress by finding solutions and the only solution is that I sit, wait and hope for the best.

I’ve made a long list of projects I’ve procrastinated on so I can keep busy. I cannot sit around and watch TV or play games all day because that weighs me down. I have to feel productive at the end of the day even if I can’t physically do everything I am used to doing. Instead of feeling sorry for myself, living in fear of losing my daughter, or complaining about this situation I am going to spend the next few months accomplishing all I can while sitting on my butt.

I almost didn’t share this news. It’s taken me weeks to decide to go “public” with it. It feels different when I share hurdles that I help my loved ones overcome compared to something that is about me. I get very uncomfortable when I’m not 100% and this isn’t the sort of attention I like. I also don’t like to cause anyone stress. Above all, I absolutely hate feeling vulnerable.

I would rather avoid the subject and then months later casually mention, “Oh and by the way, I was on bed rest for 4 months and couldn’t really hang out… sooo, whatcha wanna eat?!”

The friends I’ve known for a long time can probably go on for hours about all those “Oh and by the way” moments I have thrown at them after the fact. Sorry, guys! (Insert evil laughter here)

The reason I changed my mind is because I’ve realized there are a lot of parents who are, or have been, in the same boat as I am. Those parents who have had to play the waiting game and hope that their babies keep cooking as long as possible are more common than I ever realized.

We all want to have healthy and thriving babies, and we try not to think about those worst case scenarios. But, what I have learned in this past month is that there is so much strength in embracing these challenges and taking comfort in the miraculous success stories. I’m choosing to share what I’m going through so I can not only explain why I may pick up obsessive habits like making hats, but, to also connect with others who are finding themselves in a similar situation. Maybe my experience will provide some comfort or raise awareness no matter what the outcome.

I started this blog with the intention of sharing my “Nothing can hold me back” attitude and I plan to do just that with this situation as well. I’ve had several friends express how inspiring I am when life throws obstacles in my way. Truthfully, I don’t see myself as inspiring… I just try to get through every crazy situation with the least amount of damage while focusing on the kickassery times that are just beyond the struggle.

It is going to be a long road. I am hoping for the best while making the most out of each day while my daughter continues to cook in there and uses my ribs and abdomen as punching bags.

Live, laugh and ninja kick to happiness. Always.

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Food Allergies and Classroom Parties

There are a couple food allergy misconceptions I want to clear up with this post.

The first is that peanuts are NOT the only food allergy that can be life threatening. I don’t understand why this is a common assumption. Yes, peanuts are harder to control because the proteins that cause the allergic reaction can become airborne which is a total nightmare.

Peanuts are harder to manage because of the airborne aspect. People who are allergic to peanuts tend to have more frequent breakouts because avoidance is trickier than with something like milk. However, they are not the only fatal food allergy.

Any food allergy can potentially become fatal. Yes. Any.

That is the second thing I want to clear up when it comes to food allergies. If any food allergy can potentially become fatal, and there is no way to predict when a food allergy can become fatal, therefore all food allergies should be taken seriously.

To me, that logic is sound. However, not everyone will agree.

How Do People Die From Food Allergies?

Let me explain how people die from food allergies. An anaphylactic reaction can start out like any other food allergy response, but it turns for the worst very quickly. The body starts forming hives and swelling internally and under the skin – that is called angioedema. Air passages are blocked off and the reaction can suffocate the person within minutes. The only thing that can stop an anaphylactic reaction is an injection of epinephrine aka epi-pen. It is adrenaline that rapidly reduces the symptoms.

My daughter has, unfortunately, gone into anaphylactic shock one time in her life and that day will always haunt me. I almost lost her that day and the swelling was so horrible I didn’t even recognize her.

The only way to prevent an anaphylactic reaction is by complete avoidance. That seems easy but it isn’t as straightforward as that in a world that revolves around food.

The first time someone is exposed to a food that becomes an allergy it is because the immune system has decided that food is the enemy. The body thinks that food is something harmful and it freaks out by producing antibodies called Immunoglobulin E (IgE). Our immune system is what protects our body from harm and in the case of food allergies our immune system is being a bit paranoid – no one knows why some people’s immune systems develop allergies, and no one understands why the magnitude of the reaction varies so much.

If you know about Oral Immunotherapy that is a different topic that involves a clinical setting, initiated and controlled by a board-certified allergist and immunologist over a long period of time. Exposure to a food allergy in a clinical setting is a different circumstance than being exposed sporadically. Oral Immunotherapy is not something anyone does without a doctor overseeing it’s progression. I just want to clarify the difference so there isn’t a misunderstanding of the two.

The only way to stop your body from freaking out and creating IgE’s that cause allergic reactions is by avoiding sporadic exposure. No exposures = no angry antibodies. If your body is not being exposed to that allergen then it has nothing to attack.

Imagine your body is like a castle and your immune system is the castle’s defense system. The IgE’s are the soldiers who attack invaders. The more times your castle is attacked the more you build up your defenses. You reinforce your borders with more soldiers, your soldiers are on high alert and may be a little spazzy. You are expecting battle and ready to attack these enemies every time they poke their heads up on the horizon. If this battle continues to happen over, and over, and over, and over then your body keeps building up the IgE’s.

Continually putting your defense system on alert can result in an uncontrollable and devastating battle.

That is where anaphylactic shock comes into the picture.

Peaceful times in your body creates peaceful antibody soldiers.

The theory is that the more avoidance you have the more your soldiers chill out and it is possible they “forget” that something was an enemy. The longer you go without exposure the less paranoid and strained your defense system becomes. Studies have shown that you are more likely to “grow out” of an allergy if you do not have sporadic exposures. Studies have also shown that the more you expose your body to an allergen the more you increase the possibility of an anaphylactic reaction.

When someone tells me they, or their loved one, has a food allergy I cannot help but stress the importance of strict avoidance. Just a bite of a “mild” food allergy and some benadryl can do more harm than good in the long run. It’s just not worth pushing it even if it is not easy.

When my daughter was an infant, and she was allergic to well over twenty foods that were all possibly life threatening, I was told it would be improbable to avoid all of her allergens to allow her IgE levels to lower. Notice I did not say impossible. I was just told it would be too difficult. It has been difficult but it hasn’t been impossible and we have been quite successful despite a few battles. Our lifestyle is creating a safe home environment and careful measures outside of the home to minimize her exposure. It is not easy but it is what’s best for her.

We have been, mostly, successful. When she has had an unfortunate exposure it sets her back weeks and even months. I see the difference every time she has an allergic reaction – She has a reaction and her body becomes so obviously on alert that the slightest exposure after causes a more severe reaction every time until her body calms down again.

She is now eleven and her food allergy count is down to five. She still has insanely elevated IgE levels but she is improving. It is unclear what exactly has caused her to “lose” some allergens, but we do know that strict avoidance has significantly helped her IgE levels improve. We know that her food allergies can continue to improve or they can change for the worst any day. We just make the most of it and appreciate what we have that day.

The wild card in the deck of allergies is that continuous exposure isn’t the only way a food allergy can go from mild to worse. The scariest thing about food allergies is that you never know when an exposure to an allergen is going to be mild or fatal. One day you can have the sniffles. The next time your airways could close and the only thing that will save your life is with an epi-pen. On the other hand you can have twenty days of sniffles and never need an epi-pen.

You just never know.

But, I Don’t Have To Worry About Food Allergies… Or Do I? Should I?

Anyone can also develop a food allergy at any point in their life without warning. It happens more often than you may assume.

I’ve grown up with mild food allergies. I used to only react to pork and on a very minor scale. I would have to eat an entire ham in order to have any reaction. When I was a teenager I ate Mahi Mahi for the first time and broke out in hives. About ten years after that I ate it again and had a horrible reaction, when I was on a camping trip, after eating one bite. Two years ago I started to react to shellfish. I had never had a shellfish reaction before that day. I was actually on a blogger trip to Santa Barbara as a guest of Toyota and we were eating at an amazing seafood restaurant on the pier. The reaction came on quickly and I thankfully had benadryl on hand because it’s always in my purse due to my daughter’s food allergies. It wasn’t a horrible reaction but my lips swelled up and I broke out in hives. My friend’s and I kind of joked about it all because I looked like a cartoon character but I took it very serious. I completely avoid shellfish now.

A lot of people feel burdened by the increasing number of food allergies. Food allergies being managed at school, and especially over classroom birthday parties, is a huge topic of debate. It is a topic that has strong dividing lines that are exhausting for families of kids with food allergies. Some people feel so strongly against food allergy accommodations that they feel there should be specialized schools for kids with food allergies or they should all be homeschooled. Some people are of the opinion that the only food allergies that are worth accommodating are those that are deemed “severe”.

The problem with that line of thought is no one has an idea when a reaction will go from mild to severe. What causes a runny nose today could kill a child tomorrow.

The other problem with that line of thought is that anyone can become allergic at any time even those that have no family history of food allergies. So, someone screaming for their non-food allergic child’s rights could easily find themselves on the other side of the fence.

Someone could eat something like cashews without any issues their entire life and, without warning, go into an anaphylactic reaction from just one bite.

I will never be okay with or agree with the attitude of excluding, discriminating or punishing those with disabilities. Yes, some people feel that if it isn’t their problem then they shouldn’t have to deal with it. Some people feel that their right over eating what they want is more important than the right of a person with burdening food allergies. The attitude of “Suck it up and deal with not being able to eat the food you want.” can go both ways.

I would rather be known for the person who shows compassion, empathy and looks beyond my own selfish impulses rather than the exact opposite.

It is important that the world develops a little more compassion, patience and understanding about food allergies because while it seems like someone else’s problem… it could very easily become something that changes your life, or the life of a loved one, with just one bite.

We do not push for accommodations outside of school. We opt out of a lot of activities, celebrations and birthday parties. I host mot family gatherings because I do not want to burden anyone with her food allergies and I certainly don’t want anyone to feel guilt if they mess up. We have cut and distanced ourselves from many people who just don’t get it and don’t want to. That is our choice. We do have some of the most amazing friends in our lives who go above and beyond to make sure my daughter is safe and I appreciate them so much. For every selfish, bitter and entitled person who have encountered I am thankful that there are a dozen of the opposite in their place. These hurdles have made my daughter a wonderful, empathetic and strong young lady who appreciates genuinely rad people in her life.

It doesn’t take much for one person to consider the life, well being and care of another person over themselves despite the excuses they may have. One act of compassion may be a burden in a moment of time for one person but it is, literally, worth a lifetime for the person who’s life could end.

I hope more people choose compassion over selfishness.

I hope more people choose life over a death cupcake in the classroom.

Thank you for taking the time and stopping by. My daughter reads my blog and has a lot of input on what I write about when it involves her. I do moderate comments that are extremely hateful because she doesn’t need that and this our space. I’m happy to debate and hopefully enlighten. She does appreciate all of the kind words and general awesomeness and we do our best to laugh off the … yanno, other stuff.

Live, laugh and ninja kick. 

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