Fourth Grade & Forty (A long and overdue post)

When I was in 4th grade, my teacher Ms. Plank wrote that I was a "beautiful writer" on my first report card. Her kindness didn't make sense to me at the time because she was famously the meanest teacher in the school. 

Ms. Plank must've embraced her notoriety because she had a photo of a cartoon pirate in her class. I can't remember the exact verbiage on the sign, but there was reference to 'walking the plank' if you screwed around in her class. Everyone knew that if she told you to 'walk the plank' it meant that you fucked up and you had to come up and talk to her. I felt intimidated when she whispered to those kids, though none of them ever left her desk crying. Her command presence was so confident.

Her face was stern, but people went back to their seats and acted right. 

A lot of us kids secretly made fun of her at the time because of her fashion choices. Ms. Plank was clearly stuck in the 70's. She kept her hair long,  always rocked bell bottoms & long puff coats, and had these blue-tinted, bug eye shades that she wore during recess duty. You could never see her eyes and her face was stone cold. Her aesthetic suited her personality. The joke was on us though. Now that I'm likely her age at that time, I get it. She was going to work feeling like a boss and marched to beat of her own drum. Fuck what decade it was, Ms. Plank liked what she liked and she went with it.

She was a nonconformist and you gotta admire that. 

A few decades later, I saw some old classmates reminiscing about Colma on a Facebook post.  One of the people referred to her as a 'fucking bitch' and it got a lot of cosigns to say the least. Maybe she was, but being that I'm close to the age she was back then, I get it. Being responsible for hella kids is stressful. 

I'm a fucking bitch, too.

I like to think that despite her tightly pursed lips and expressionless stare, she loved each and every one of her students. She taught us music and square dancing. She encouraged us all to play instruments, but I eventually dropped out of clarinet because I didn't want extra work. 

Like I said, some things never change. 

If my memory serves me correctly, she didn't have children of her own, but she dedicated her life to teaching hordes of kids. We couldn't expect her to be nice all the time. She did her best to put goodness in the world. So, in case you're using her impact on me as a gauge, she really did do some goodness. I think we all start our own careers being bright-eyed & hopeful until time, responsibility, and sometimes people, wear you down. After nineteen years of doing the same thing, I'm there now. 

I get it, Ms. Plank. Fuck work. Lol.

Ms. Plank sticks out to me the most out of all my elementary school teachers because she was one of the first people in my life that saw me...even before I saw myself. Surely, I wasn't writing novels back then, but man, she had to have known what she was doing by saying that to me. That report card comment was pivotal in changing my mind about her. Here I am, 30 years later, still writing. Still mad that I never went on to Harvard. I never lost that part of me. 9 year old Tiff is still the same as 39 year old Tiff.

Ms. Plank changed me.

I still think about her often. Because I'm a total stalker, I went down the rabbit hole a few times trying to find her over the years. In fact, I took a quick pause from writing this to try and find her again. What I do know is she's still local and she was teaching as of 2020. She is still unlisted and still not on social media. And... I'm still awkward and would never reach out to her even if I did find her. At the very least, I hope she can feel all the gratitude I'm sending her way. 

By the end of 4th grade, I adored Ms. Plank despite the fact that she never outwardly showed any affection, tenderness, or preference over any one student. I appreciate her equality in that sense. She had no pets. In 5th grade she signed my yearbook and simply put, "Remember the music." I thought about what that meant for many years. Why would I ever want to remember the clarinet? Or square dancing? Or 4th grade math?!

I get it now. 

Just for shits and giggles I went back and read the post I wrote to commemorate turning thirty. It was a cringey read, but I'm glad it exists. What I've come to realize is that I spent much of the last decade doing a lot of what I was doing in my 20s...

Just trying to figure shit out.  

I went on to have three more cubbies so that was big. Finally got married at thirty-five and updated my last name. But, I still didn't win the lotto, still don't contribute to my 401k, still feel fifteen inside, still take my time to perfect the beat, and I still got love for the streets! (We can't be friends if you don't know where that last part is from.) All jokes aside, I spent much of the last decade not seeing myself. I was too damn busy. So, I've spent the last three years trying to see myself again the way Ms. Plank saw me.  

Reflecting on that woman has been transformative for me. 

For starters, I increased in volume in the white hair department, but I honestly don't care. It's odd to me that so many people do. I'm talking randoms, too. The post office guy. The dude checking my temperature at a doctor's visit. Well-meaning family & friends. It's amazing how comfortable people feel telling me what they think I should change about myself. I'm just nice like that, I guess.

So... let the record formally state that I embrace my white hairs so much that it's almost to the point of resistance. 

It's just hair, but it holds deep sentimental value to me. This is pregnancy hair going as far back as Ethan. Those dry, brittle ends people tell me to chop off because they think it's ugly are the last reminders of when he was here. I'm marching to the beat of my own drum and I'll cut my hair or dye my hair when I'm good and ready. Just like Ms. Plank and her 70's clothes, I like what I like. So leave me be. Please. 

I'm a nonconformist and you gotta admire that. 

I've come to love a lot about myself. Even the parts that people think I shouldn't. It took a lot of work for me to get to this point in my life. I was under-spoken for many, many years and I swallowed my feelings to please others. I felt yucky inside because of it. Not anymore.

I'm the nicest, stone cold bitch you'll ever meet.

The last decade has taught me that people are going to think, act and feel how they want. And, if they're going to have something to say about you, no amount of kindness you do will stop them. I hold firm  boundaries now. When I feel weak, I give myself space to retreat and recover. I know it makes people feel uncomfy because they're still getting used to this part of me. I hold people accountable now and I feel liberated because of it. What Ms. Plank taught me was that I should take pride in that. 

People should 'walk the plank' if they're fuckin up, but still show them kindness.

I left the kids and husband out of this post with intention because I'm practicing being me outside of  mother and wife. As I wipe my feet at forty's front door, at the very least I know for a fact that I still like to write. And, that I need to stop being so damn busy all the time. If you'd made it this far, I thank you for your dedication! We can all learn a lesson or two from my romanticized memory of Ms. Plank. 

Take no bullshit. Let mfers know.

Keep your spirit light.

And no matter how fucked life gets, remember the wonderful things. 

Remember the music!

God willing, I'm looking forward to continuing this story at fifty. 

Square dancing in my sister's kinder grad dress. lol

1991. I cannot make this shit up.

(If you're still alive and ever read this, I'm sorry if I was wrong about your age, Ms. Plank. In my defense, all adults looked forty to me in 1991. P.S. Blogs are different. I remember that you're not supposed to start sentences with 'And' and 'Because')

COVID x Cubs

These were the guidelines emailed to me after the cubbies tested positive. Full Disclaimer: What I’m about to say here may not be a popular opinion, but I’m going to say it anyway. 

As far as I’m concerned, what the first sentence said is all I needed to know (and already knew) once my cubbies tested positive: Isolate for 10 days. 

Boom. Done. 

It is my humble opinion that the 5-day guidance was created because of pushback. I’m not invalidating any one person’s reason to pushback. It is what it is. However, for me, the operative word in this guidance is “must.”

MUST we end isolation after 5 days or is it more of a WANT/NEED? 

I understand antigen tests can be taken 5 days after diagnosis to safely dictate returning to work or school, but I also know from my own experience that the kits aren’t consistent. We all already know this though...don’t we? Once I got the first positive, I did improv confirmatory testing for all the cubbies. Just as I suspected, there was an inconsistent mix of positives and negatives on THREE different brands that I used back to back on the same kid. Hence my scheduling PCRs for the whole den the next morning.

I’m not trying to bash brands here, but let’s just say I was surprised at the outcomes. 

If you’ve been keeping up with my stories these last few days, there is a reason why you see me using different brands every day. I have zero symptoms, but I test daily to keep my last “men” standing, safe. 

So as we enter day 5, will a single negative antigen test dictate whether or not I send my kids back to school on Friday?  HELL TO THE NAH.

I’m thankful that 6 of the 6 infected in our household have gone without fever for well over 48 hours now, but that ain’t enough for me. I’ll spare you the report out, but there are varying degrees of symptom improvement ‘round here. They’re doing 10 days on the inside whether they like it or not

I think that interpretation of whether or not “symptoms are improving” can be subjective. And for some, decision-making time could be influenced by needs or wants. I legitimately had someone tell me that they were asymptomatic, but also that they “had a little sore throat but that was it.” This person ended up returning to work and spreading it to their colleagues because they didn’t isolate for long enough. The antigen test was negative so they thought they were good.

 There is a difference between SYMPTOM-FREE and HAVING SYMPTOMS — no matter how mild. (Link to CDC isolation guidelines below.)

Back to the unpopular opinion part: If you’ve had symptoms of any kind — just do the 10 day isolation period. Or at a minimum, test on different kits back to back if you must you return to work/school/gen pop whatever you want to call it after the 5-day mark. 

I know my kids caught COVID from school, but since we get contact notifications several times a week between all of them, it’s hard to say who Patient Zero is in our household. They all tested at the same time. Like I said, I don’t rely solely on antigen tests because of the inconsistency so I scheduled a PCR for them the next morning.

The den had a good run dodging COVID all this time. And while I’m overwhelmed that we’re here, I’m also relieved that I now know the unknown.

I also can’t help but think that we’re finally here because we live in a society where “must/need” is bringing people back too early with “improved symptoms” furthering the spread.  Or, perhaps families are relying on antigen tests alone when they should still schedule a PCR at the onset of any symptoms. Like I said — no judgement — I’m just reflecting on this now that I have the capacity to do so. I know it will reek of privilege for me to say this, but our school community has convenient and abundant access to pooled testing, antigen kits, and walk-in PCR testing. 

I don’t understand why these resources aren’t being utilized to effect that I’m still getting COVID notifications so often that it has become normal. 

For my family, I don’t care if it’s a tickle in their throat or a runny nose, I don’t send them to school unless they are tested. Some of the cubs were blessed with my trifecta (asthma/allergies/eczema) so we test like crazy around here. At its peak when access to antigen tests and PCR appointments were slim, I’ve waited in cold lines on January mornings, holiday weekends — you name it — just to make sure we kept others around us (and each other) safe.  I’ve had a lung collapse — been on ventilators in the ICU three times in my life —  in addition to having two kids with rare hemophilia.

We do not play around here. 

Now that COVID is in my home, I wear N95s 23/7 — even in my sleep! I only take breaks from masking when the sickies are isolated in their rooms and everything has been sanitized. 

Whether or not my efforts to stay negative will be futile, remains to be seen. 

It has been my social observation in my work and in my personal life, that for some, there is an unspoken shame or embarrassment that comes with COVID diagnosis. I saw it with my own family the minute their rapid tests came back positive. I witnessed two simultaneous, fear-based reactions: What will this do to me and what will people say about me?

I had those feelings, too. 

Now that my family is here, I think it’s important that we normalize this conversation because this is everyone’s new normal. 

Once I shared my experience, I had all sorts of private messages from people who willingly shared their own experiences, tips & tricks, and recommendations with me. In its own way, it was wonderful and normalizing. 

(Yes, even the well meaning, but slightly annoying messages from a small faction of folks coming out the woodwork with messages that had me thinking they didn’t know the f*ck I izzz and how I do do, mayne! P.S. Yes, I am making sure to sanitize my hands. Lol.)

Ever since I stopped blogging, IG has become my community of sorts, and while I know I can share the rigamarole of all the home remedies and treatments I already know because of what I do for a living, I’m sharing my opinion on this one piece, in case it helps someone else.

To reiterate: Got COVID? 10 day isolation OR simultaneous testing on different brands — if you have access — if you must return after the 5-days. 

I’m rooting for you either way, friends. May the odds be ever in your favor and may the force be with you. 💚

https://www.cdc.gov/coronavirus/2019-ncov/hcp/duration-isolation.html

On Being Strong...

On our way to the ER the night of the missed bleed, with her still head pounding from the pain, Niki told me that she wasn’t afraid to die. She just blurted it out and my heart broke.

We continued to talk about it and I internalized what I really wanted to do: cry.

It hurt when Noah said it me on the way to the ER a few years back. He was only 5 and as pale and lethargic as he was, he looked at me through half-closed eyes and said, “Mommy, I’m not dying.” I looked at him and said, “No, you’re not.” 

And I fought to regain my composure by thinking positive.

It’s so unfair they have to even think of death, isn’t it? But this is their reality. And it is my reality as their mom. 

These are the moments I don’t always share because I wanted so badly to be positive. To me, negative thoughts weren’t productive or healthy. While it’s good to be positive, forced optimism doesn’t exactly allow the emotional bandwidth to process pain either.

But... pain is normal. It’s just taboo to talk about it.

I realized these last few days that trying to spin my pain into something positive, isn’t healthy. I realized that it’s OK to just be in this “negative space” sometimes. It’s normal to be afraid. It’s normal to be anxious. It’s my normal. It’s OUR normal. 

I can’t always be strong. Can you?

Even though it hurt me to hear it, and even though it’s traditionally perceived as negative to talk about death, given their circumstances, it’s very valid and normal for my kids to think about their own mortality.

To be transparent means I should share all facets of my reality, right? Even the uncomfortable parts that may make people feel uneasy. The parts that parents like us — parents whose children live with chronic or terminal illness, parents of kids with special needs, parents whose entire lives grind to a screeching halt when their kids are sick or need advocacy, parents who lost children — may not necessarily feel safe to share. 

Parents like us understand what this “negative space” feels like and why some of us go to great lengths to hide it.

The sleepless nights filled with worry or research...The grief we repeatedly experience from loss of normalcy and control... The fear of the future...The tears that we fight to hide when we are “weak” and shed them while our kids are around...The discussions where you dance around your partner’s feelings so as to not worry them...The hard discussions where you may not always see eye-to-eye on the best plan for your child...at first. 

I want to validate the normalcy all of these feelings and raw & ugly moments because hiding them isn’t healthy. I used to pride myself on how well I could hold pressure inside. I got so good at it that I thought I was invincible. I thought it made me stronger, but I realized these past few days that I’ve been unintentionally showing my kids that they should strive to be superhuman and emotionally invincible, too. 

I was wrong.

There is a word in Tagalog called “mahinhin.” Loosely translated it means to “be modest or gentle or humbled by authority.” It’s a requisite for Filipina femininity. The opposite of being mahinhin is being a pain-the-ass. The frantic mom. The woman who yells when she doesn’t need to. Even when I’m seething with anger or frustration, it rarely comes out when I really need it to.

I’m always careful to not piss people off, especially people who take care of my HemoKids. 

I don’t want the my Hemokids to be mahinhin. I dont want them to be afraid to be human and say what they need or express how they’re feeling. It’s OK to cry and be upset just like it’s OK to laugh and feel happy. It’s part of the human condition to have range in our expressive emotion.

There is no better time than the present to address whatever it is that weighs heavy in our hearts and minds. To say what we want and need. 

We should normalize sharing not only our joy but our pain,too.

I realized these last few days that I can’t possibly be effectively teaching Niki & Noah to fully advocate for themselves while still trying to be the optimistic, mahinhin mom. The mom who doesn’t want to bother the staff when they’re already so busy. The mom that gently asks when I should be yelling and insisting. The mom who tries to be the positive spokesperson. The mom that tried so hard internalize fear, anger, trauma, and grief that when it comes out now...it’s uncontrollable. 

It made me weaker in the end. 

So let me normalize it and say that I hate being in this space sometimes. I hate that I thought I had to be positive all the time. I hate that my kids have to live with FVIId. I hate that Ethan died. I hate that I could lose them the same way we lost Ethan. I hate seeing them in pain. I hate that they even have to think about their own mortality! I hate that I’ve had people openly question me about whether decisions we’ve made for our kids were the right ones. I cringe when people with “normal kids” tell me I’m strong and they couldn’t do it if they were me. 

Forget decorum. You’d hate here it too if you were me. That’s a lot of pressure. 

Life isn’t butterflies and rainbows all the time and it damn is hard being in the shoes we wear every day. There is nothing admirable about it. If you had these cards, I guarantee you’d be able to do it, too. It’s not a spiritual calling or cosmic selection. The strength special needs parents have comes from the same strength you use when your kid has the flu. 

You just double down and do it. Your kid needs you. So does ours.

Parents like us are fighters, but placing all of us on a pedestal because we have kids with special needs only increases the pressure to be positive. To internalize what would make other people feel uncomfortable. I hate that my pride (our pride) makes accepting help feel very uncomfortable...even if we may need it. So we don’t. We rarely ask for help unless we absolutely can’t do it. We. Got. This...so we think.

This is the ugly side effect of being placed on that parent pedestal: It has made us hesitant to accept kindness because now it feels like pity. 

For a very long time I felt like I wasn’t allowed to break, you know? I was repeatedly told that people couldn’t handle it if they were me so why would I allow myself to break? It made me feel like I also needed to be mahinhin with what I shared or risk breaking that decorum. It was a high, albeit unintentional, expectation to meet.

I essentially invalidated my own normalcy. People meant well, but I hardened myself because I thought I had to. 

Like, you’re trippin Tiff. You got this. Thug it out. Everyone says you can do it so why are you having such a hard time? Wtf is wrong with you? Man up. Stop crying. Handle it.

I saw the results of all my years of false positivity and optimism during this hospital stay. It translated to Niki being too shy to ask for ice chips unless I asked for her. Or playing down her pain until she couldn’t bear it anymore. It translated to her looking at me for encouragement before she answered a question. It seems insignificant, but if you read between the lines, it is. That is definitely NOT what I wanted for her. And I definitely don’t want that for Noah. 

We’re working on it. 

But as I sit here and type this, I also realize something beautiful happened when she wasn’t afraid to share that she was thinking about death. There was something special about Noah doing it, too. It means they intuitively know that they have a safe space to share the range of their emotions. And as negative and scary as it may sound to people who don’t understand, somehow despite me and all my mahinhin-ness, they have enough confidence to speak out loud, instead of holding it in. (Most of the time.)

I think they get that trait from their father.

Worry

Niki just finished a particularly painful infusion and cried herself to sleep. This is not the first time and it won't be the last. She has been dealing with unexplained vascular pain during her infusions for the last few years now. Some days she can deal and other days she can't. Today just so happened to be a day that she couldn't. 

During the infusion, I reminded her to breathe through the pain. We've had this talk many times before and it's always in the same tone of voice that I use when my patients complain of pain during their blood pressure checks. I can best describe it as a monotoned, but soft and encouraging voice. I'm have no outward reaction to her shrieks and crying. I prefer to panic internally for fear that any other external reaction will weaken her. Sometimes I let out just a hint of irritation and frustration when she forgets to do her breathing. She knows breathing helps and I'm usually exasperated when she doesn't do it. I know this all sounds cold and harsh, but when my parenting journey isn't as perfect as I'd like it to be, I go with what comes naturally.  I treat her like one of my patients because I hope it will empower her. I feel like babying her will make her feel the pain even more. I'm not her mom in this very  moment, I am her caregiver.

Nevertheless, no matter how many times I've coached myself to emotionally detach during times like this, the negative comments I've heard in the past (and present!) start to echo in my mind. Self-doubt rears its ugly head and I worry if I'm doing this "Mommy/Caregiver thing" right. Am harming her by not coddling her when she's in pain? Should I be gentler and more maternal? Can a "mind over matter" approach really teach a 7yo girl how to cope with physical pain for the long haul?! 

So many questions, but no answers. All I'm left to work with is an amalgam of my own beliefs and people's opinions -- both the good and the bad.  I'm in a constant state of trying to figure things out. The fear of the worst case scenario is always there. These fears quietly whisper  to come out if I'm not strong enough to to shush them away.  So what happens? I allow my moment of weakness to consume me and and let all my worries  flood my brain. Terrible, horrible thoughts take over...

The negative people are right. She truly is suffering because of her condition. What if I have another child die? What will that do to my family? My other kids are suffering because of their sick siblings. It was irresponsible for me to have children knowing I could pass along this condition. Why don't I just tie my tubes and stop trying to be so  optimistic all the same time? Get out of the cloud of happiness and face reality like a real woman! You're going about this mom thing all wrong. People are right to judge, Tiff.

I'm too hard on myself sometimes. I know it. I own it. That's just how I am.

As I stared at the tears drying on my sleeping babe's face, worrying about how much I'm screwing up as her mother, my mind drifted to a conversation that I had with my coworker earlier today.  My coworker is much older than I am and a hell of a lot more devout in her practice of the faith. She is probably one of the most content and kindest people I know. Unfortunately, she has been plagued with medical issues lately and she shared her distress and worries with me. She also expressed guilt for having those feelings. 

We talked about how hard it is to "let go and let God" sometimes. It takes a lot of strength to be able to completely cast your burdens upon Him 100% of the time. If our faith is supposed to be strong, then why do we still worry? It all feels so hypocritical. Shouldn't His presence be enough? How can one claim to have complete faith in God's plan, but still experience worry, fear, and anxiety during trials and tribulations?

During that conversation, we revisited how we believe that man has been created in His likeness. I went a little further and shared my belief that our flaws are an intentional part His creation. All of me -- the good and the bad -- was created by Him. This means that during our creation, the addition of an emotion like worry was just as intentional as the addition of contentment. I've always believed that it is a blessing to have things fear. It is a blessing to have the ability to worry and feel anxiety. It serves a purpose in our soul. Worrying helps renew our faith and reminds us to trust in God's plan. 

How many of us have bargained with the Lord during times of self-doubt or emotional distress? How many of us have ferociously prayed for guidance when something tough comes along and we don't know what to do next? Worry is there so we can reconnect with the Lord during our most vulnerable moments. Just like a child looks to her parents for comfort when she falls, we look to God for very same purpose. There is beauty to be found in the anxiety and stress of worrying. 

So here I am, several hours after that conversation, thinking about the beauty of His wonderful intentions. The downfall of being transparent and wearing my heart of my sleeve is it leaves me vulnerable. I've experienced unsolicited hurt and judgement from others along with the positive support, too. It is human for me to fear and worry about what other people think. It is human for me to have these visceral reactions to things that have potential to hurt my soul.

My heart was filled with anxiety and inadequacy earlier, but it is full of peace again. It's full because I've reconnected with God through the gift of worrying and self-doubt. I still don't have all the answers, but I find comfort in knowing that I'm not alone. Although I don't know what lies ahead for Niki, Noah, or any of my other Cubbies, I find solace in knowing that God is there for them in His perfection even when I'm flawed. Whatever it is, whatever may come, it is well with my soul. I won't worry for very long. 

Saved Seconds

Remembering to take a picture of a happy moment comes naturally to people. If you know me well, then you know that I take pictures of both the good and the bad.

Why do I do this?

Because my biggest regret about Ethan's passing was not taking pictures. At the time, I thought I wouldn't want to ever re-live that moment. Now, almost seven years later, I regret not documenting how beautiful his funeral was and how blessed we were (are!) to have so many people love and support us.

I learned long ago that there is always something to be grateful for even in the worst times. You just have to look real hard and have faith that the epiphany will come to you. Life is beautiful even at its darkest hour...believe me when I say this! While I may not always see the beauty right away, I have hope that I can look back on a specific photo of a "bad time" and learn something new about myself.

My faith plays a huge part in how I'm able to survive (and how we are able to survive as a family!) despite so many hurdles thrown our way. Being able to look retrospectively at yourself is essential to maintaining endurance...and sanity, of course. Every experience we have is a learning opportunity and there is always room for personal growth. I'm a firm believer that anyone in our shoes would be able to do the same. All parents  have the ability to channel amazing strength when it comes to their children.

So, what's the deal with this picture?

This photo was taken in the recovery room after Noah's surgery. It was a long, worry-filled day to say the least. Now that I've had the time to look back on the photos from that day, this particular photo stood out to me. It may seem insignificant, but the revelation I got while staring at it hit me like a ton of bricks.

This guy right here is my soulmate.

Our love is far from perfect, but he is one of the biggest blessings in my life. I really don't think I could endure any of this without him by my side. I often take him for granted. And... I forget to appreciate him in all the chaos that comes with raising six little lions. He brings me dinner in bed when I'm feeling sick (which is often.) He will wake up at 3am to get me drink because I'm still afraid of ghosts and the dark at 32 years old. He doesn't give me a hard time about it either...most of the time. And that's just naming a few of my oddities...

I guess what I'm trying to say is that he can be brave when I am weak. He is my match. Looking at this photo 3 days later made me remember how lucky I am to have this man by my side.

Noah

Dear Noah,

You're 5 days old today. These last 5 days I've felt completely out of control because I can't protect you anymore. I'm trying so hard to mask my fears. I'm supposed to be a veteran, but I feel like I have no idea what's going to happen to you. You're doing great considering the circumstances, but for whatever reason I don't feel like you're "mine" yet.

Often times I'm so afraid that it almost feels like you're only "loan."

It's probably just my hormones enhancing my greatest fears. I'm just so terrified to lose you that it's hard for me to believe that everything is going to be fine. I'm by your side so much that the nurses have to remind me to go outside and take a break. The day you were born and I finally got to hold you for the first time, I didn't even realize that I bled all over the place. I was so focused on you.

In the last 5 days you've been such a trooper. Three blown IVs, countless times they fished and poked  your tiny limbs trying to draw blood, a scare during your transport, head ultrasounds, and yesterday's wake-up call during your surgery....too much for a such a tiny baby.

I feel guilty. I want to take all your pain away. I have to fight every urge to cry along with you. Holding you is the only thing that gives me peace. And....I can only hope that you feel that same peace, too.

Today was tough.  You're wiped out and I can feel it. I can feel you trying, too. You're strong already, my boy. I hope tomorrow is better for the both of us.

Love you,
Mommy

Protect You...

Dear Baby,

You'll be here soon and I don't feel completely prepared. I wish there was more I could do for you. I wish I knew how this will all turn out. The fact of the matter is I don't. I can only hope for the best and prepare for the worst.

Faith is all I have at this point.

No matter what happens, I can only hope that you know that I did everything in my power to protect you. There are so many things that I want to share with you, but words escape me right now. I can only find comfort in knowing that you can feel me right now. And as you kick and squirm inside of me, I know that in this very moment, I could guarantee that you were safe.

I love you more than words can express,
Mommy

And then there was seven...

Our Baby Announcement. I don't think people got it the first time.

I'm fourteen weeks pregnant today. The seventh extension of my heart and soul is living and growing inside of me. Lucky Number Seven. We weren't trying to get pregnant, but it happened anyway. God had other plans for us. He always does.

Once the initial shock of discovering our little stowaway subsided, everything seemed to be going well. I was tired, but I barely had any morning sickness or heartburn.  I even got an appointment for CVS relatively quick this time around. I guess going through this process so many times makes things easier for all parties involved. I knew what to expect having undergone a CVS with Blaise and our genetics counselor was very familiar with our case. She was our champion advocate when I became pregnant with Noie. She was the one that found the one out of three labs worldwide that is equipped to test for Factor VII Deficiency. I think she was meant for us.

I bled terribly when I had my CVS with Blaise -- in fact I thought I lost the pregnancy. This time around I was lucky enough to have the test done through my abdomen. It was similar to the amniocentesis I had during my pregnancy with Noie, but just a bit more painful. 

The extraction process

Our first detailed glimpse of "Lucky"

I had the test done on October 10th and by October 22nd, we got our first call from our genetics counselor. So far everything looked good. No signs of any genetic anomalies and we were expecting a boy! It would just be a few more weeks before we found out the results from the lab in London. 

The next few days were filled with our usual Halloween fare. Tailoring costumes, filling goody bags for class parties, school parades and of course, trick-or-treating. I completely forgot that I was waiting for some pretty important test results. 

Halloween Carnival Fun

Taken before we went trick-or-treating at Colma

I was at work when I saw the missed call from the Genetics Department. It was November 1st -- All Souls Day. I immediately called our genetics counselor back, but she didn't pick up. It took her nearly two hours to call me back, but I didn't think anything of it. With Noie and Blaise it took forever to get our results back. I didn't think I was calling her back for test results.

Well, the results came in earlier than expected. 

I was hoping that this phone call would end just like my pregnancies with Noie & Blaise. Surely, I'd have another carrier.  After all, there's a 50% chance that we'd have a carrier, 25% chance of a normal, and 25% chance of a deficient. Why wouldn't I have another carrier? I thought that our seventh baby, our fifth boy, would walk away from the genetic risks unscathed.

I was wrong. God had other plans for us -- for my son.

The rest of the call was a blur. I was at work so I couldn't allow myself to process the news or react emotionally. I still had patients to deal with, so I had to fight back the tears. To say my heart was broken is an understatement. My genetics counselor was very gracious and apologetic. She told me that she would support me in whatever decision I chose to make. Part of a genetic counselor's job is to be familiar with how religious faith can come into play. She gently reminded me that I could choose to have a D&E if that was what worked best for our family. She also sent a consultation to Hematology should we decide to move forward with the pregnancy. Most importantly she reminded me to take care of myself and to know that I was not alone.

I would be lying if I said that I didn't for a millisecond honestly consider discontinuing this pregnancy. 

I've always had genetic testing done for the sole purpose of preparedness -- not as a means to make a decision. I had the tests because I wanted to know -- and wanted to know early -- what preparations our family needed to make "just in case." I got so used to our genetics tests resulting in good news that I wasn't emotionally prepared for the "just in case" to become a reality.

And now there I was in the thick of reality.

I'm Catholic, but I also respect a person's right to choose. However, I will admit that I've always staunchly decided against abortion for myself because I know what I am/am not capable of handling. Hence the seven little lions in my den.

The pain of losing Ethan is too complex to describe in one sitting. But I will say this... it was heart-wrenching to have to make the decision to withdraw care. Even though he was already declared "brain dead" a huge part of me felt like I was "playing God" when I signed the paperwork to withdraw life support. I didn't want to decide -- even if it was just for the sake of legality. I wanted the hospital to tell me that they had to withdraw care. But my friends, that's just not how it works. At 25 years old I had to "choose" to discontinue my son's lifeline. 

I can't make that choice ever again. 

As soon as I got off the phone with our genetics counselor, I called John to tell him the results of the test. We've had it rough this past month with his unexpected job loss and preparing to move, receiving our youngest son's test results was just the icing on the cake from hell. He didn't take the it well and I was still reeling from the news myself. Our discussion was quick and filled with a lot of f-bombs and self-pity. Because seriously, what more can you say other that "Fuck!" when you feel like life is screwing you left and right?  We both did what we do best whenever crisis initially hits -- we cocoon into the isolation of our individual emotions. When our incubation periods are over, we try to emerge with clearer heads. 

Sometimes we succeed, and sometimes we don't. 

Luckily, my best friend works in the same department as me. She came to the rescue and spent her lunch hour listening to me cry, hope, dream, fantasize, hate the world, and exhibit some pretty horrible cynicism. Generally speaking she witnessed me lose my shit. I love her. She was with me through that first storm of emotions. I still had the whole work day ahead of me and somehow I was able to suck it up and survive it. Probably couldn't have done that if I didn't have the opportunity to offload my feelings at that moment.

When I got home that night, we were both still in our cocoons. We tried to talk about it, but it was hard. I did a lot of thinking in bed, cocooning myself into the bed sheets. I thought about what was best for our family and what we are/are not capable of as parents. I thought about what's fair/unfair to the rest of the kids. How could I ever explain losing another sibling to the kids? I thought about how amazing our lives have/have not been having experienced the joy/love/fear/pain that Niki & Ethan brought into our lives. Mostly, I thought about the tiny heartbeat inside of me. I knew that night that I would not be the one to choose if that heartbeat should stop. I was ashamed with myself for even momentarily considering it. 

I know what I am/am not capable of as a mother.  

That night I struggled to define what "suffering" and "selfishness" really means. Those words are heartlessly tossed around quite frequently for parents in situations similar to ours. I thought long and hard about my suffering, my selfishness. My baby's suffering. Ethan's suffering. Annika's suffering. I thought of Niki and how amazing she is and how much she has overcome in just this year alone. I thought of Ethan and the tragedy of his life being cut so short so soon. I thought about my son inside of me. I could protect him now, but not forever. Would he be born into this world only to suffer? Did Ethan suffer? Is Annika suffering? Am I really selfish for continuing to have children who are less than perfect?

I thought a lot, but didn't have concrete answers. Just opinions. And opinions don't count.

Being diagnosed with severe Factor VII Deficiency isn't an automatic death sentence, but it can be. I would be living in denial if I didn't acknowledge that. I know that reality all too well after losing Ethan and especially after Niki's brush with death this year. John and I were told long ago that the severity of our particular mutation isn't supposed to be compatible with life. It's a miracle that our children have been able to live. Regardless of what society may say, they are my miracles and I love them. I will do anything in my power to protect them. 

The truth is, I'm not the strong one in all of this, they are. I'm just their Mom and I leave it all in God's hands. Even though some people may have a different opinion, I know that they have a Higher Power watching over them. God is not allowing my children suffer. He is not making me suffer. 

Most importantly of all, I know that it's not possible to be selfish when things are done for the love of your child.

"Lucky " 10/30/2013

Five

Five years ago today was the last time I held you in my arms. Five years ago I was loving you, kissing you, and not wanting to let you go. Five years ago I struggled to find peace in my nightmare.  I havent found peace since that time we spent together in the wee hours of the morning.

Saying goodbye to you was the hardest thing I've ever had to do in my life.

It's been so long that I forgot what it felt like to hold you. I can't remember the feeling of your weight in my arms. It hurts admitting that. Time like this I wish that you would come to me in my dreams. Just fool me into believing you are actually here! Even if it were only for one night. And you havent. And I know you probably don't because you also know that I won't be able to handle what it will feel like when I wake up.

That night, I tried so hard to commit every ounce of you to memory. I was sure that I would never forget the weight of your little body in my arms or what it felt like to kiss the top of your fuzzy head. Love creates miracles and I was sure that my body would instinctively remember you. But too much has happened since then. Too much heartache. Too much pain. All I can remember is how empty my arms have felt without you in them.

I'm missing a part of myself.  I'm missing a piece of my heart. Some days, I can't imagine living the rest of my life like this. Aside from the pain, I have anger. Not anger at God, but anger at this world. And perhaps, to some degree, anger at myself for dropping my guard. I should have been able to help you. I should have trusted my intuition sooner. I failed you.

It was my job to protect you, and I couldn't.

People say I shouldn't blame myself, but only you understand why I blame myself. I can't even put it into words -- there are no words -- but Lord knows why. But I also know that you don't blame me. I also know you served your purpose here. I just don't understand why it had to happen to you, my sweet baby.

The thought of what your little body went through those last moments haunt me.

Did it hurt? Did you know we were there? Were you moving your foot as a sign that you were still around? Did you hear me singing to you? I felt you when you entered the atmosphere. I knew you were gone before they confirmed it. You were around me, but when I left that room it felt like I left you in it.  I haven't felt you since.

What I wouldn't give to feel you again.

God, I miss you.

Hello 2013!

Oh that's right, I have a blog! 

Rather than resolving to start blogging consistently in 2013, I've resolved to try my best to blog whenever possible. Or at the very least once a month.. I'm trying to keep things low-pressure for me now thar I'm officially a mama of "five."

Blaise entered our lives on 1/4/13 and I'm still trying to adjust to life with a newborn. Please bare with me as I try to make a comeback to the blog game. ;-) 

The Most Powerful Prologue I've Ever Read...

Imagine this.

You’re driving home from work next Monday after a long day.  You turn on the radio and you hear a brief report about a small village in India where some people have suddenly died, strangely, of a flu that has never been seen before.  It’s not influenza, but four people are dead, so the CDC is sending some doctors to India to investigate.

            
          You don’t think to much about it—people die every day—but coming home from church the following Sunday you hear another report on the radio, only now they say it’s not 4 people who have died, but 30,000 in the back hills of India.  Whole villages have been wiped out and experts confirm this flu is a strain that has never been seen before.

             

By the time you get up Monday morning, it’s the lead story.  The disease is spreading.  It’s not just India that is affected.  Now it has spread to Pakistan, Afghanistan, Iran, Iraq, and northern Africa, but it still seems far away.  Before you know it, you’re hearing about this story everywhere.  The media have now coined it “the mystery flu.”  The president had announced that he and his family are praying for the victims and their families, and are hoping for the situation to be resolved quickly.  But everyone is wondering how we are ever going to contain it.

            That’s when the President of France makes an announcement that shocks Europe: He is closing the French borders.  No one can enter the country and that’s why that night you’re watching a little bit of CNN before going to bed.  Your jaw hits your chest when a weeping woman’s word are translated into English from a French news program: There’s a man lying in a hospital in Paris dying of the mystery flu.  It has come to Europe.

            Panic strikes.  As best they can tell, after contracting the disease, you have it for a week before you even know it, then you have 4 days of unbelievable symptoms, and then you die.

            The British close their borders, but it’s too late.  The disease breaks out in Southampton, Liverpool, and London, and on Tuesday morning the President of the US makes the following announcement: "Due to a national-security risk, all flights to and from the US have been canceled.  If your loved ones are overseas, I’m sorry.  They cannot come home until we find a cure for this horrific disease.

            Within four days, America is plunged into an unbelievable fear.  People are wondering, What if it comes to this country?  Preachers on TV are saying it’s the scourage of God.  Then on Tuesday night you are at church for boble study when someone runs in from the parking lot and yells, “Turn on a radio!”  And while everyone listens to a small radio, the announcement is made: Two women are lying in a hospital in NYC dying of the mystery flu.  It has come to America.

            Within hours the disease envelops the country.  People are working around the clock, trying to find an antidote but nothing is working.  The disease breaks out in California Oregon, Arizona, Florida, Massachusetts.  It’s as though it’s just sweeping in from the borders.

            Then suddenly the news come out: The code has been broken.  A cure has been found,  A vaccine can be made.  But it’s going to take the blood of somebody who hasn’t been infected.  So you and I are asked to do just one thing; Go to the nearest hospital and have our blood tested.  When we hear the sirens go off in our neighborhood, we are to make out way quickly, quietly, and safely to the hospital.

            Sure enough, by the time you and your family get to the hospital it’s late Friday night.  There are long lines of people and a constant rush of doctors and nurses taking blood and putting labels on it.  Finally it is your turn.  You go first , then your spouse and children follow, and once the doctors have taken your blood they say to you, “Wait here in the parking lot for your name to be called.”  You stand around with your family and neighbors, scared, waiting, wondering.  Wondering quietly to yourself, What on earth is going on here?  Is this the end of the world?  How did it ever come to this?

            Nobody seems to have had their name called; the doctors just keep taking peoples blood.  But then suddenly a young man comes running out of the hospital screaming.  He’s yelling a name and waving a clipboard.  You don’t hear him at first. “What’s he saying?” Someone asks.  The young man screams the name again as he and a team of medical staff run in your direction, but again you cannot hear him,  But then your son tugs on your jacket and says, “Daddy, that’s me,  That’s my name they’re calling”  Before you know it, they have grabbed your boy.  “Wait a minute, Hold on!” you say, running after them.  “That’s my son.”  

            “It’s okay,” they reply.  “We think he has the right blood type.  We just need to check one more time to make sure he doesn’t have the disease.”

            Five tense minutes later, outcome the doctors and nurses, crying and hugging each other; some are even laughing.  It’s the first time you have seen anybody laugh in a week.  An old doctor walks up to you and your spouse and says, “thank you, your son’s blood is perfect.  It’s clean, it’s pure, he doesn’t have the disease, and we can use it to make the vaccine.”

            As the news begins to spread across the parking lot, people scream and pray and laugh and cry.  You can hear the crowd erupting in the background as the gray-haired doctor pulls you and your spouse aside to say, “I need to talk to you.  We didn’t realize that the donor would be a minor and we…we need you to sign a consent form.”

            The doctor presents the form and you quickly begin to sign it, but then your eyes catches something.  The box for the number of pints of blood to be takes is empty.

            “How many pints?” you ask.  That is when the old doctors smile fades, and he says,”We had no idea it would be a child.  We weren’t prepared for that”.

            You ask him again, “how many pints?”  The old doctor looks away and says regretfully, “We are going to need it all!”

            “But I don’t understand.  What do you mean you need it all?  He’s my only son!”

            
 The doctor grabs you by the shoulders, pulls you close, looks you straight in the eyes, and says, “We are talking about the whole world here,  Do you understand?  The whole world.  Please sign the form.  We need to hurry!”

            “But can’t you give him a transfusion?” You plead.

            “If we had clean blood we would, but we don’t.  Please, will you sign the form?”

What would you do?

            In numb silence you sign the form because you know it’s the only thing to do.  Then the doctor says to you, “Would you like to have a moment with your son before we get started?”

            Could you walk into that hospital room where your son sits on a table saying, “Daddy? Mommy? What’s going on?”  Could you tell your son you love him?  And when the doctors and nurse come back in and say, “I’m sorry we’ve got to get started now; people all over the world are dying,” could you leave? Could you walk out while your son is crying out to you, “Mom? Dad? What’s going on?  Where are you going? Why are you leaving? Why have you abandoned me?”

            The following week, they hold a ceremony to honor your son for his phenomenal contribution to humanity…but some people sleep through it, others don’t even bother to come because they have better things to do, and some people come with pretentious smiles and pretend to care, while others sit around and say, “This is boring!”  Wouldn’t you want to stand up and say, “Excuse me! I’m not sure if you aware of it or not, but the amazing life you have, my son died so that you could have that life.  My son died so that you could live.  He died for you.  Does it mean nothing to you?”

            Perhaps this is what God wants to say.

Father, seeing it form your eyes should break our hearts. Maybe now we can begin to comprehend the great love you have for us 

- Taken from Rediscovering Catholicism

In lieu of blogging...

...you can catch up with me on Instagram by searching "fourlittlelions"

I've been extremely busy juggling work, taming "four" little lions, and a very heavy workload of crafting. Needless to say blogging has been put on the back burner once again.

Also? In case you haven't heard, I'm pregnant with another cubby! Baby Blaise will be joining our den in January 2013.

God is good.

I've Negelected You, Blogger.

Ah, here we are again - another blog post where I'm apologizing for not blogging.

Empty apologies? No.

I really DO mean it when I promise that I'll be better about blogging.  It's just that I've got so much going on that I have to put blogging on the back burner. Quite frankly, I miss utilizing writing as therapy! However, it also takes a lot of time to write a post and there aren't enough hours in the day.These days I rely on Instagram & Twitter to document our lives because it's just so much easier.

But....never fear, I'll be back soon! I've just got to survive this round of events to craft for and I'll be back.

Till next time...

Grown Up?

I'm turning 30 this June.

Thirty.

Soon I'll be the "old woman" that I always dreaded I'd become.

For the record, I never thought of being thirty as a good thing. When I was in grade school, I thought thirty-year-olds were just a few years from retirement -- practically senior citizens as far as I was concerned. As a teenager, I perceived thirty-year-olds as basically "hella old." In my teenage eyes, 30-somethings lacked any desire to have a life or do anything remotely close to fun. And in my early 20s? To simply put it, thirty-year-olds "had no business in the club."

To me, turning thirty automatically ordained you as a financially established and emotionally mature member of adulthood. Thirty meant you had a college degree, a career, married with kids, voted, cared about current affairs, invested in stocks, had a retirement plan, owned a house with white picket fence, and so forth. The age almost has an air of stateliness to it. Thirty is important. Thirty means you're done with irresponsibility. Thirty means you don't want go to the club. Thirty means you have your shit together.

Reaching this age feels like a rite of passage. Now here I am, wiping my feet at the threshold of thirty's door, and I don't think I'm ready guys.

Don't get me wrong -- I'm not afraid of getting older. I've accepted that my white hairs have reached a point where they aren't manageable by simply plucking them out. I've even embraced the worry lines on my forehead. As far as I'm concerned they're badges of honor -- I earned those bad boys fair and square. Hell, I've even gotten over the fact that my boobs really aren't going to get any bigger! (I blame this ignorance on my pediatrician. She gave me false hope that I'd "bloom more" after I had kids and started lactating. Ha! Wrong.)

The physical changes associated with aging don't bother me. Though I'm not beyond buying myself boobies and a tummy tuck if my 40s push my "insecurity button." (Or if I win the lotto. Whichever comes first.) No, what bothers me is that I don't feel like I deserve to be thirty yet.

I still feel like I'm fifteen inside.

Sure I have a job, I'm responsible for the lives of four little lions, and I pay my bills on time just like the next guy, but can I be honest for a minute? Most days I want to lay in bed, watch crappy reality shows, craft, and eat Coco Puffs. I haven't even been summoned for jury duty yet, and I'm supposedly going to be thirty soon? I'm starting to think that even the people at the courthouse know I'm not emotionally mature enough for that level of responsibility.

The reality is, I'm turning thirty, but I feel like a little girl playing pretend in a big girl's world.

Ironically though, things happened to me in this lifetime that actually make me emotionally older than thirty. Too much heartache. Too much responsibility too soon. Too many medical problems. Too much loss. Frankly, all of those things have aged me about a thousand years. It would age you too, my friend.

So, although I'm capable of making decisions like a thirty-year-old, I'm still far from caring about my contribution to my retirement. Yes, I said it, I haven't started a 401k.

I'm still trying to figure out what I want to do with my future let alone trying to figure out how to retire from it! I never had a chance to peruse though the "aisles of possibility" in my early adulthood. Having kids at a young age forces you to grow up, you know? "Real" thirty-year-olds probably followed a college-marriage-house-kids plan of action whereas I followed a  kid-kid-some college-kid-kid-kid-worklikeadoguntilthedayIday succession. So, I often feel like I'm playing catch up with my emotional development.

Like really, I'm turning thirty and I'm STILL not done with school?! Like really, I'm turning thirty and I don't even know where to begin when it comes to the stock market?! Like really, I'm turning THIRTY and I still want to spend my days water-coloring like I did back in high school?! Like really, I'm turning thirty, have FIVE kids, and I'm still not married?

While the rest of my friends spent their 20s being free and finding themselves, I spent most of my 20s living in the "right now." The "now" commanded my decision making and emotional development. There was no time for dreaming. No time for fun. No time for Coco Puffs. I was busy working two jobs, going to school, grieving, procreating, and raising kids while trying to raise myself. And now I desperately want to regain all of the "possibility" that I lost in my 20s.

I don't feel like I'm 30 yet because I skipped an important phase of my emotional development. I'm stuck in high school -- or Coco Puff-land as I like to call it. I miss living in the unapologetic selfishness and egocentricity associated with being "young."  I love my life, but sometimes I just want these kids and my baby daddy to leave me alone for just one stinking minute!

Maybe it's a Mom thing? Would I even feel this way if I was  "normal" thirty-year-old mother? Shouldn't I be a doting mother and "wife" all the time instead of the overstressed, daydreamer longing for a day off from responsibility? How could I possibly deserve the title of "Being Thirty" when all I truly desire is to consume massive amounts cereal and uninterrupted time for creativity?

I don't know. But I do know this -- 30 isn't the end of the world like I thought it once was.

I'm in no rush to feel my age. I'll get there eventually, but for now I'm OK with being Peter Pan on the inside -- I refuse to grow up. I refuse to let thirty define me. I may sometimes feel self-conscious and uncivilized when I'm in the company of normal, mature thirty-year-old mothers, but I'm learning accept that too. Life is a work in progress and it ain't over until it's over. There is so much that I want to do and tons of time to do it. There is nothing wrong with still believing that possibility is out there. And who said life needed to be done in a specific sequence anyway?

I'm conclusion, Jay-Z was right. 30 is definitely the new 20.

Apologies are in order...

Please excuse my last post. I was debilitated by my own sadness that day.

Moving onward...

He Died in His Daddy's Arms...

We stayed up the night before holding him in our arms for just one last time. We loved him for every second we could. We took pictures. We played music -- the same song that we played as he slipped away. He moved his foot when I sang to him. We cried and prayed for a miracle. We could have sat there with him forever if time wasn't against us. The inevitable was going to happen in a few short hours, and somehow we had to figure out a way to accept that.

I remember that night well...

The NICU arranged for us to sleep in the hospital just in case Ethan decided to leave us sooner than anticipated. We woke up, got ready, and tried our best to keep ourselves together. Today was the day we were going to say goodbye to our baby. How do you prepare for that?

We were on the brink of falling apart.

A friend of mine (who took Ethan's xrays when he was first admitted) came by to visit with us in the NICU. She was the first visit of that morning. Then slowly but surely, family and friends poured in to support us. We met with our social worker and Ethan's doctors. They talked to us about what would happen as he slipped away. He would be given morphine to make him comfortable. It could take minutes or hours before he left us. They advised us that he may appear to gasp as he slipped away, but that it was not him struggling to breathe. It scared me. I was numb.

I couldn't believe this was happening.

The staff arranged for us to have a private room on the 7th floor in Pedatrics. I remember walking up there and passing the nurses station. There was a group of student nurses there in their tell-tale scrubs. I met their eyes and I immediately knew that they knew...

We were the family that was losing their baby today.

We were in the room talking with family, friends, and the social worker making sure that everything in order. We brought his quilt from home and my brother-in-law Jason gave us Ethan's song to play.

Then suddenly he was there.

We thought we were supposed to call to have him brought up so it took us by surprise. We weren't ready to say goodbye, but there Ethan was, being bagged by a nurse. His doctor and social worker were there, too. My brother-in-law Chris later told us that our social worker was tearing. Everything went quickly from there because all I could do was stare at him. I couldn't believe it. He looked so tiny in his bed. The people in the room left. And then it was just us and the NICU team.

The NICU nurse stopped bagging Ethan at 10:06am.

They snapped a picture of him and then placed Ethan in our arms and they left. I was just the three of us in that room together. The last time we were alone with him was the day he was born. It seemed horridly unfair.

It's impossible to describe those last moments with Ethan....

To say what went on in my head as I said goodbye to my baby...
To express the immense pain and fear that John and I were experiencing...
To describe the internal battle I was having with my faith in God for allowing this to happen to Ethan...

There are no words, just emotions.

John is the only other person in the world who knows what it felt like.

Gut-wrenching sobs painfully tore through our bodies until I thought we couldn't take it anymore. We laid in bed with him, trying our best to soothe Ethan as he slipped away. He didn't gasp. If I didn't know any better, I would have fooled myself into thinking he was just sleeping. But I knew better.
The energy in the room shifted, and Ethan died peacefully in his Daddy's arms at 11:00am.

We haven't been the same since. If you're reading this, hug your children tighter than you've ever hugged them before. I will hug mine. And I will pray to God that he gives us the strength to survive another year of this lifetime without our baby. I will miss him until the day I die.

Mommy loves you, my Little Lion in the sky...