He is as ok as he can be.

Recently I came across a blog that really hit home. A fellow mama posted a link to it. This mama and I live states away but connected during our NICU stay and life after the NICU. Having someone out there that understood the life of a NICU family was so comforting. Even though we live miles apart those miles didn’t seem so far when I saw all of my friends welcoming their second babies, smiling faces, swaddling blankets, coming home on day three from the hospital. Holding their babies just after birth just as I did Noah…I felt eons away from that reality I so desperately wanted. So a few states away or one facebook message away wasn’t all that far.

The title of the blog was, “But She’s Healthy Now Right?”

The title alone had me catch my breath.

I struggle with this daily. Every time we go out. “He is ok now though right?”, “good to have your boys all fine and no worries now!”, “he will catch up and be chasing his brothers in no time!” Or “he is almost 2?? He crawls right?”, “glad that is behind you, huh?”, “aren’t you glad you are out of the newborn stage?” And on and on and on and on.

When no…we aren’t out of the “newborn stage” and nothing is behind us. We aren’t in the “clear”. He doesn’t crawl, barely can hold his head up and still eats from a bottle and doesn’t tolerate regular food and is on a very special diet. Just one of his bottles that he has to have a minimum of three of cost $8 each, they are nearly 450 calories a bottle with 11 grams of protein in each. Trust me I know how exhausting the newborn phase is, I’ve been living it for nearly three years now with that short break right before the twins were born. So take that newborn phase and add on some medical chaos and a million appointments, live that for a year with no end in sight and come back and tell me how grueling that 6 month newborn phase is.

I never know what to say…people don’t know what to do with the truth and don’t often want to hear the truth. That this sweet gorgeous curly haired blue eyed boy isn’t “ok”, yes we aren’t in the hospital right now…but he is not ok. People don’t even know what CP or PVL are…they don’t know about NEC or short gut or seizures or auditory neuropathy.

I say the words brain damaged and they often recoil in horror.

People don’t want to hear the answer to why isn’t he responding to me saying his name…he is deaf.

People don’t want to hear the answer to why won’t he look at me, just let me try (clapping, waving, dancing, etc.)….no, it wont work he is blind.

People don’t want to hear why his identical twin is more than double his size and the struggle we face daily to get him to gain weight….that he has no large intestine and short gut syndrome. Sometimes I like to think maybe I should invite these people over for short gut diaper duty…or wish they would have been there in the beginning for the 20 poopy diapers a day (at least) and trying to control a diaper rash that was more like a 3rd degree burn up until he was 1. Maybe then they would understand why he weighs “just” 16 pounds. To us it is more like, “Aiden weighs a whopping SIXTEEN POUNDS!!! He has cheeks to pinch! I can’t count every rib in his chest! HE HAS FAT!! He is GROWING!” Or maybe I should just start saying, “you would have a hard time gaining weight if you had diarrhea 10 times a day too.”

I never want people to feel uncomfortable. I know they aren’t meaning to open old wounds. I know they don’t know they are the sixth person asking me the same question that I’ve encountered that day alone and I am just trying to get my kids to the park or grab a few quick things at the store. I know that they mean well.

But sometimes I just want to say its ok to not be ok. That I don’t want to hold my son to the standard of not being “ok”. That he is more than all the things stacked against him. That he is more than a diagnosis. That we are just at the park. We are just at the store. That I don’t know you. That he is just a kid, just like his brothers.

I guess what I am getting at is please, before you speak, before you ask “what is wrong” or “everything is ok now?” that you need to be prepared for the person to not smile and say that everything is ok. That when you ask why my son is so small or why he is so different than his twin and want a neat, nice, warm little answer that ends with a happy ending that I struggle because I don’t know what to tell you. “I would really like to fill you in on prematurity, the 5 month NICU stay, NEC, PDA openings, spesis, DIC, organ failure, PVL, auditory neuropathy, infantile spasms or epilepsy (we aren’t sure yet) and our fears and battles in the future and present BUT I would LOVE to just grab the bananas, milk and cheese I came in here for without rehashing my child’s medical history and triggering my PTSD. K, thanks!”

Think about what the result of your words or questions will be good or bad. Are you just curious? Does it matter if we’ve made to that ever elusive “ok” – does that change how adorable he is? Does it change his infectious smile? If you are just a passer by, you don’t need to know the details to pray or wish someone well or admire a babies smile or child’s laugh. Think about that family and if they are at the park trying to have fun or at the store rushing to get grocery shopping done with three kids (which is already NEVER easy) and think about how your words will affect that. Think about your largest struggle in your life and wonder if you would want to be asked to explain it every time you ventured in public.

I know there will always be people who ask pregnant women if they are having twins, when they aren’t. People asking if your pregnant, when you aren’t. People asking when you will have kids when you either don’t want kids or you desperately do and wonder the very same thing. People don’t mean to stick their foot in their mouths, but it doesn’t mean it doesn’t hurt or strike a nerve.

And not all questions are bad. Not all concern strikes that nerve. Our neighbors, friends, community and more have asked and offered help. Been there to celebrate a good day and been a shoulder to cry on for the bad. They have been in it for the good and the bad and walk with us. It is small talk. The nosy nature of wanting to know just to know.

I never know what to say, the truth is, it is day to day, minute to minute and we are thankful for each one because he was given less than a 1% chance live. So no he isn’t “ok” or “normal” or what many would call “healthy” but he is here and that is all that matters. 

So I take a deep breath and say, “he is as ok as he can be right now.” Because isn’t that the best any of us can do?

 

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DIY wood pallet important dates or best days of our lives sign.

Due to an overwhelming response to my latest DIY project I shared on Facebook and Instagram I wanted to share with you all how easy it is to make your own best days of our lives sign.

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I had seen a lot of important dates signs floating around on Pinterest and Etsy but none of them were exactly what I wanted for the space I had.

 

We have a large area next to our fireplace that needed filed. We already have two gallery walls, so instead of risking the chance of that corner of the living room feeling cluttered I wanted something large but meaningful.

 

I wanted something that would make me smile and make me feel grateful. When I came across the important dates signs I knew that was it.

 

That was about a year ago.

 

I don’t own a Cricut (as much as I wish I did) and I didn’t want to buy a stencil to do it, nor did I like the look of stencils. 

 

So I just kept lusting after all those signs that came through my Pinterest feed…then one day a link to how to transfer ink popped up in my feed with just regular old printer paper and a jet ink printer.

 

My husband knows the way to my heart and luckily he came home that week with a perfect pallet for the project. All the slats were already next to each other and with cutting it down a bit it would be perfect.

 

All that I had to do was pick out my fonts, dates, wording and format the printing for the project.

 

The project took me about two hours to complete or in my world 1 extra long miracle triple nap from the boys, plus 30 minutes of patient toddler crafting while I finished it up.

 

First I picked the dates and wording.

 

I started out by making a mock up in Word on my computer.

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I kept it small at first so I could see the over all look and played with the fonts.

 

I knew I wanted to use something more industrial for the numbers and something that resembled calligraphy for the wording ( I used Courier New for the dates and Eyes Wide Shut for the script).

 

I finally got everything formatted the way I liked it and was ready to print.

 

This step shouldn’t have been as tedious or hard as it was.BUT I have a cheepy ink jet printer…like it costs $20 with the ink in it.

 

To get the ink to transfer to the wood you have to make sure the ink will be touching the wood…the way you do this is to print the wording in a mirror image.

 

Normally this is just a setting when you go to print and option you can chose in the settings or properties…I was not so lucky.

 

There was no mirror image option.

 

So I busted out my good old MS paint skills. I did screen shots of my font and pasted and cut them in MS paint then used the flip horizontal option under rotate on the tool bar and printed from there.

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Since I wanted my font to be pretty big (size 300) I had to do it by sections.

 

Once I had it all printed I went about figuring out the placement by laying it all, like a rough draft.

 

Once I figured out my spacing I started the process of transferring.

 

I laid the paper ink side down and used a wet paint brush to dampen the paper.

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You want to get the paper wet but not soaked enough that the paper will dissolve.

 

Once I wet the section of paper I wanted to start transferring I used the back side of a plastic paint brush to run the ink areas to get the ink to transfer.

 

The ink transfers really well (not to gloss paint or glossy surfaces though!) you can leave it as is (black) or go over it with paint as I did. You just have to make sure to rub all areas of the font, when the paper is wet it is easy to see where the letters and numbers are (that doesn’t show up well in pictures!).

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I was tempted to leave it black but I thought white would work better with our living room.

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I just went in with some left over white paint and I had the look I was going for!

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I trimmed down the pallet after the paint dried and that is it!

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I love that the sign is a constant reminder of how much a day can change your life and I can look and see all the best days of my life and be reminded just how blessed I am!

Since this sign is pretty big we haven’t hung it yet, I want to make sure to get anchors but I was eager to share it all with you before! 

Feel free to reach out if you have any questions and share your signs if you decide to give it a try!! 

 

Catching our breath.

Kevin called on his way home from work. He could tell I was distracted.

I hadn’t expected him home as I thought he was working a later shift but I had his schedule mixed up.

He asked if everything was ok.

I told him I couldn’t talk that Aiden was acting weird and something just wasn’t right.

He said he would be home soon and I hung up the phone.

I grabbed the hospital grade suction machine we have and used it on him and got nothing, even though he sounded terribly congested.  I then put him in his bath seat.

Aiden loves baths, they are the magic fix all for him.

The CP causes him to be so tight all of the time takes quite a toll on him and relaxing in the warm water offers some relief from that.

He calmed down and seemed to be doing a little better.

I hadn’t made dinner it was already 8pm. I was swaddling Aiden and rocking him trying to figure out dinner with Noah at my feet, tugging at my shirt, “EAT! EAT!” doing the sign for eat over and over. He heard the door and ran from the kitchen. I heard the excited squeals from Noah, “PEEEEZZZZA!!! PEEEEZZZAAAAA!!! DADDDDYYYY PEEEEZZZZAAAA!!!”

Ok. One problem solved I thought.

Aiden was comfortable and relaxed after the bath, I dressed him and put him in his rocker right next to me while we ate dinner.

His breathing was calm, his hands folded together over his chest, totally relaxed and following the rise and fall of his chest.

I told Kevin, “keep an eye on him, something just isn’t quite right. He has had a funny cough that started up this evening and his retractions looked a little worse right before his bath.”

He looked him over and noted he was barely retracting at all and seemed peaceful.

We both did the mental, “whew, thank God,” sigh of relief.

But about 15 minutes later he awoke from that quiet sleep with the same peculiar cough I had heard earlier, but this time he couldn’t really get himself out of it.

I got out a stethoscope and listened to his lungs and while I am no doctor or nurse I knew something wasn’t right. One side sounded noticeably different.

We packed up the boys with the thought of heading to Urgent Care but realized it was a Sunday and they were closed.

Kevin called his mom who is a NP and asked if she could listen to him as she only lives a block away.

Aiden is a funny case, retractions are normal for him, noisy breathing is normal for him, but this was just a little worse. Having someone that knows Aiden is beyond helpful because taking Aiden in without knowing his baseline would land him in the ER. Something as simple as croup can sound terrifying when it comes to Aiden and we didn’t want to expose him to the ER unless we had to.

She listened to him and she confirmed our gut feeling. He needed to be seen.

We left the other two boys with his parents and rushed to the ER.

I sat in the back with Aiden, it was dark and I couldn’t see him well so I kept my hand over his chest to feel him breathing.

It was steady but he was stressed. I turned the light on and unzipped his outfit after I felt his rib pulling in a way I couldn’t believe. He started to have substernal retractions. It looked as if he had a golf ball on top of his sternum every time he took a breath in.

It looked as if his heart was literally trying to come out of his chest.

I told Kevin to just pull in front of the doors of the ER and I would get out and he could follow.

I got out of the car and Aiden looked at me and I pulled the blanket over his head to shield him from the wind.

I made probably 15 steps from the car to the doors.

I walked in and there was someone in front of us signing in. The nurses made eye contact with me and immediately stood up and I blurted out, “he is having trouble breathing, he 3 months premature, he has BPD.”

Just then I pulled him down off my shoulder and he wasn’t breathing.

I called out to him as the nurses surrounded me.

“Aiden!?”

The nurses called for more help and gave directions to each other.

“Aiden?? Aiden!!”

My voice sounded like it was coming from someone else.

I pushed on his chest and rubbed my knuckles against his sternum.

His arms fell at his side limp. For him and his CP that is near impossible for him, something was very wrong.

The nurses started moving us to the trauma room and after a few tries they finally heard breath sounds.

He began breathing again but was still not coming to.

They had me lay him on the bed. He looked so tiny.

I began to rattle through his symptoms and his medical history.

People filled the room.

So much of the time in that room was a blur.

He came to once they began sticking him with needles trying to get an IV and began deep suctioning him. What they were getting out they called “cement”. The amount they got out they could not even believe.

He fought through every second of them working on him.

He would hold his breath and his muscles would spasm and he would arch his back and his raspy voice whaling out in pain.

His body began to be covered in broken blood vessels, he was so stressed he wasn’t breathing, they kept having to blow in his face.

Kevin filled out the forms. I couldn’t.

I just kept watching the faces of the people working on him looking for answers.

They asked us to wait in another room and I refused to leave.

I was shaking, tears falling, flash backs from the NICU when he was going into organ failure were flooding my brain.

The alarms. All of the tubes. Blood gasses. Xrays. IVs.

It all was a nightmare.

They began to get cultures on him for everything they could think of to see what we were up against.

After what felt like an eternity people began leaving the room.

The doctor in charge of his care said that they needed to get him in my arms ASAP because she knew it would level out his stats.

They handed him to me and he was covered in blood.

They had stuck him so many times.

I held him close to my heart, kissed his sweaty forehead and breathed him in.

His stats began to normalize.

Another nurse came into the room to take over for the other and in their conversation with each other they said, “RSV positive”.

“Wait. RSV positive? He gets the shots….he isn’t held by anyone besides us, his grandparents and nurses and doctors….we stopped doing group speech for our toddler so we wouldn’t be bringing in the germs….I don’t get it.”

They apologized and said they had seen it a lot this year.

They wheeled me sitting on the bed holding Aiden up to the PICU.

Kevin stayed with Aiden while I left the room and called our families and gave them updates.

Aiden was so tired from fighting, he actually fell asleep.

It was nearing 4am and I pulled out the couch so Kevin could get some sleep before work the next day, he still was going to have to go home and get changed because he was still in his work clothes from the day before.

I fell asleep sometime after Kevin left in the morning for an hour.

I couldn’t let my mind rest. The familiar clammy plastic couch pull out bed. The sound of alarms breaking night. It felt like the nights where we weren’t sure he would make it through.

It all felt so surreal.

A nurse came in the room to tell me to not beat myself up, that it really was a phenomenal thing that this was his first hospital stay since leaving the NICU and that he was just needing basic supportive care.

We were there from Sunday through Wednesday.

He did really well with his stay. Everyone remarked how well he was doing and that he was such a strong fighter for everything he had been through.

He began having secondary issues the second night we were there. He started feeling well enough to realize he did not want to be at the hospital and was stressed about it.

His GI systems is so sensitive any change in diet or stress will be shown via his GI system.

He started dumping. He would have a bottle and make a diaper before he finished it with that bottle.

They were not adding rice cereal to his bottles to slow his food down and that with the stress created a very bad GI problem for him.

On Tuesday I barked up enough trees to get him his rice cereal and it helped but the stress was still overwhelming for him.

Any hospital stay is a stressful one. The shuffling around of Noah and Evan. The schedules arrangements. The exhausting job of being an advocate for a very unique little boy.

Having to retell every step of his history to every new nurse or doctor we came across.

Seeing your child stressed, in pain and exhausted.

Thankfully we have an amazing support system of friends and family that are there for us at a moment’s notice. Kevin could still go to work, we could still spend time with Noah and Evan who were very upset that Aiden wasn’t home. My mom took shifts being with Aiden after he was stable so we could not totally throw off Evan and Noah, it was so helpful to know what wonderful hands Aiden was in when we left to go see Noah and Evan….such wonderful hands he was rarely put down. It was so comforting to see him realize she was there, he has vision and hearing problems but when he smells her he lights up.

We had frustrating moments at the hospital. Like when a resident came in and asked us if he was struggling so much because of having Downs….which he does not have. That same resident also so tastefully stated that Aiden, “came out the hole with style” because his hair naturally turns up like a Mohawk.

But we had good moments like when a NICU nurse came by to visit (even though we missed her!) it is just nice to know how much she actually cares even all this time late and nurses that went above and beyond for Aiden and us and of course them being able to make the interventions they needed so he could stabilize.

Aiden has been at home for about 4 days now and has really been doing wonderful. That first night he was home was like night and day. He stopped dumping and spent a good chunk of the evening laughing and smiling. Putting him in his crib next to Evan, Evan kept pointing at Aiden and clapping and Aiden almost melted into his bed. The familiar smell and comfort was almost like medicine for him. We hooked up our monitor that tells us if he stops breathing or moving to give us some extra reassurance.

It is easy to lose my breath thinking about the evening that brought us to the hospital.

But that night we were in the exact place we needed to be at the exact moment we needed to be there.

I know that somehow we were blessed with that gut feeling to know something wasn’t right and to act on it.

And that is what has given Kevin and I peace. It is hard to erase the image of your child not breathing from your mind and all of the “what ifs” that go along with it.

But knowing that by some means we were blessed with that sense, that awareness and understanding is what has given us the chance to catch our breath.

And in catching our breath we can just be thankful. 

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FINALLY able to eat! He told the entire floor about how it had been 18 hours since his last bottle!

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His first morning in the PICU feeling much better.

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It is hard to see but that was the last day we were there and the petechiae (broken blood vessels) starting to resolve across his chest and face but they are still pretty bad.

 

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Super happy that Daddy could come spend the afternoon!

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Grandma made sure his crib was colorful with lots of balloons!

 

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Only way he wanted to sleep, I can’t blame him hospital beds are awful!

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Last day!

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Dad got off work just in time to take us home!

 

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You did it Aiden! We are going home!!

Mommy-isims

After a night of running around trying to get some errands done without the kiddos for the first time in months. 

Kevin: I don’t know what to do with my arms when we are out without kids.

Me: I know it is like when you push your hands against a door frame and you let go and they just start to rise…I feel like I have to fight my hands from flailing around awkwardly.

Kevin and Dominique plus 3

Posts have been few and far between here.

 

For many reasons, but one mostly.

 

Having a 2 year old and infant twins is hella hard.

 

There is no amount of sleep (not that we get any), no amount of caffeine that can touch the constant heavy blanket of fatigue that is over Kevin and I.

 

There for when we do have spare energy I usually don’t spend it blogging.

 

My brain cells have been in survival mode since the twins came home. I don’t normally have enough to spare to form a lucid thought let alone an entire witty blog post or one that isn’t just a short:

 

HELP ME.

 

My days are spent with Dora, Elmo and keeping up with the Duncan’s not the Kardashians.

 

I usually feel like a haphazard mess when we do get out of the house and then our outing usually end up feeling haphazardly disastrous so any attempt at feeling “normal” is just a vicious circle of haphazardness.

 

I want to blog, really if I ever should have been blogging about my life to document for my family/show the kids later in life so they don’t gripe when I tell them to clean their rooms or at least serve as entertainment for others it should be now.

 

Our life could be a reality show.

 

Sometimes when I am waving my white flag at the kids and trying to down my fifth cup of coffee before they lunge another attack at me I think about the Goslin gang and I try to whine less or at least try my best to not be Kate Goslin-ish.

 

Sometimes when things happen that would be full of canned laughter on our imaginary television show I don’t see it as funny at the time.

 

For example…recently someone sold us a rigged stroller off craigslist. We got scammed. Before we realized we had been duped we (I) decided it would be wonderful if we took our entire family to the local farmers market. I think I forgot I don’t live in Pinterestlandia and this is the kind of thinking that gets us into haphazardness and that I actually have 3 boys…2 infant boys and a 2 year old that don’t really dig farmers markets or being in public, well at least not behaving in public. The stroller was acting funny on our walk with all three boys strapped in and finally as soon as we got to the farmers market it broke. In the middle of the entrance. A huge, semi tractor trailer of a stroller that weighs almost 100 pounds broke with all three kids in it in the entrance to the farmers market. We sat on the ground and tried to fix it but it didn’t work, we figured we would just carry the boys around, enjoy the farmers market and then figure out how to fix it when we were done. You know make the best out of a bad situation. WRONG.

 

It was totally broken, not going back together, the previous owner used GLUE in the sockets so it would work to be shown not used.

 

So we had to walk home. We weren’t terribly far from home but when you insert Noah mourning (raging over) the death of his balloon animal he got at the farmers market and the fact that the twins are near impossible to hold together at the same time and they both decided they were hungry as we were leaving and wanted to tell the world about it, oh and it was a nice 95 deathly degrees out we might as well have been states away from our home.

 

Kevin carried Noah at first and I carried the twins. About a block away from the market Noah took his box of milk and squirted it over Kevin’s head and I was losing the twins. He couldn’t understand why I couldn’t just keep them up (there is an I told you so coming up) and I hoped taking the one that could hang on instead of slide down me like a greased pole would be better.

 

WRONG, wrong, wrong, wrongy, wrongy, WRONG!

 

Noah brought his wiggles guitar to the market and would not leave it with the stroller and was carrying it while being held. And by carrying it, I mean hitting me in the face with it most of the walk home.

 

Sweat dripping down my face, I am 99.9% I have not only developed asthma on this walk but am now having an asthma attack and am in fact dying and all I can hear are the cries of my seemingly feral 2 year old and the ever so overly cheerful wiggles singing, “fruit salad, yummy yummy, fruit/fruit/fruit/fruit salad yummy yummy.” (Note: the repeat is the smashing of the guitar on my face restarting the song)

 

I look up and Kevin, who was so sure the twins would be easier is carrying them like footballs by his hips.

 

We look at each other and through parental telekinesis tell Kevin to go ahead since his load was lighter and not waging an all out war against him. He shuffled home and I took a break from carrying the wild alligator, I mean my toddler home.

 

I stood Noah up on the sidewalk and waged the mom maneuver of I can do this all day kid attitude. We stared at each other for about five minutes and I asked him to walk and he did. He then realized it was hella hot outside after three houses and he did not want to walk and put his arms up for me to carry him.

 

So I mustered up what little energy I had left and carried him home, the last stretch wasn’t as bad, I think Noah was even tired of his antics by this point.

 

We got inside and all I could hear was my heart pounding in my head. Kevin left to go get the stroller with the van. Noah came up and hugged me and patted me on the back and asked for milk.

 

I got him milk, trying not to curse the fact that he had just dumped a box of milk that cost as much as a half gallon of milk out from Starbucks on Kevin’s head and down the front of my shirt.

 

I then sat down on the computer and updated my status on Facebook.

 

Dominique Teall

We bought a triple stroller yesterday and decided to take it out today to the farmers market…as soon as we pulled up the wheels popped off and wouldn’t go back on. We carried all three boys, one screaming after the death of his balloon animal all the way home. 
Worst (non medical) experience as a parent to date.

 

 

Immediately people started commenting how funny it was.

 

I closed the computer, irritated and pouting and went to self loath and hide the Wiggles guitar.

 

I cooled down….realized I myself was throwing a temper tantrum of the emo type and realized it actually was pretty funny.

 

Although when I hear the wiggles I do have PTSD flash backs of that walk I do laugh a little.

 

We are trying to sort ourselves out and adjust to our life of Kevin and Dominique plus 3. While it doesn’t sound as daunting or catchy as Jon and Kate plus 8…somedays…ok all days it feels just as hard.

 

So forgive me for the lack of updates, if we are being honest let all just applaud that Kevin and I are still alive.

 

Hopefully on top of surviving there will be blogging too.  

Kevin-isims

While out shopping at TJ Maxx…

Kevin: Look at this…this pillow is ruined. It is stained or discolored or something.

Me: No…that is an ombre effect. 

Kevin: I am supposed to pay $20 on a pillow that looks like I was in charge of doing the laundry…no thanks. 

Me: It is trendy.

Kevin: That isn’t what you said when I ruined the towels and all those clothes the last time I did laundry – they all looked just like this!

Me: Well aren’t you crafty. 

Kevin: Apparently! 

I’ll be seeing you.

*Please understand this is a letter to my brother, whom I had just lost. I am in no way at all condoning what he did and forever my heart will ache for what happened. It isn’t right or fair what happened. Please do not assume I am speaking of a specific person because the assumptions have been wrong. He was more than the last mistake he made. He was human and broken – that is not an excuse at all. This letter was written with a very broken heart, filled with sorrow of a horrible choice a mistake that took so much away from so many.  I am not in denial of what happened, I am speaking of the person I grew up with for 24 years…he was not born the person he was his last moments here on Earth. I am mourning the loss of a person and his mistake.  I understand what happened and I would give anything to have been able to stop what happened. As far as what I knew…I only knew that my brother faced a very hard life, one that for many, many years he tried to overcome and tried to get better. We all tried to help him. If I could have known or would have even thought for a second this could have been something that would have happened I would have moved mountains to stop it.  I only knew that Zack was loved, that he loved, that he was not only his last day here on Earth…that was the story I spoke of…I wish I had known more…every day I ache for those lost and all those left to mourn this tragedy.  Every day I ask why. Every day I wish I could have done something. All of us would have stopped this if we could have, all of us are mourning and I just wanted to clarify because this post was misunderstood by some…we are all dealing with something none of us should have to deal with or ever fathomed dealing with. This was written before I could even try to begin to search for answers…I was just lost in grief not even a week after, it was just the pain for what became of my brothers life. There was good before this and that is what I am mourning and I will forever mourn the events surrounding the end. Please understand this isn’t an attempt to clear his name, to sit in denial, to condone his actions — this is just me his sister so sad that she couldn’t change what horrible mistake destroyed so much and mourning the little brother she grew up with and the life I wish he could of had. 

This is private…but I am sharing it because my brother deserves love and he deserves to be mourned. Headlines and news stories never tell the entire story and never seem to remember it is people, a son, a brother and a friend they are reporting about.

Dear Zack,

This isn’t how it is supposed to be, this isn’t how this is supposed to go.

I am your big sister…I am the one that was supposed to go first. But you never did follow the rules did you?

I don’t know how to say goodbye to you…I know you didn’t either and that is why you didn’t. So I hope you understand if I don’t say goodbye…at least not yet…I am just living in the temporary..the break until I see you again..

Beyond how sad I am, how deeply this hurts, how every cell in my body misses you, I am thankful…so thankful.

Thankful I got 24 years with you.

You were and are a good person.

You cared so deeply, loved so deeply and lived so fully.

You my brother were the epitome of carpe diem.

You were my first friend….my first best friend.

I remember pretending to be asleep when mom would tuck us in and after she would leave you would sneak into my bed and we would “read” books, even though I didn’t know how to read yet and we would talk about all things important to us….like how we saved those rolly pollies from being crushed on the sidewalk or who we wanted to be when we grew up..

I remember how you drove me crazy listening to “mmmbop” from Hanson on repeat and I drove you crazy by listening to the Spice Girls on repeat. I remember how your Ninja Turtles had tea with my barbies in their dream house and then they would all go help your Ghostbusters capture ghosts. I remember when you went crazy on the log flume ride at Kings Island because you realized at the top of the hill you actually didn’t want to be on the ride and you gave us all a heart attack trying to crawl off the ride.

With those memories I also remember you being so brave because the memories were not all good…you were hurt by the very person you as a little boy looked up to more than anything..your own dad. That title “dad” is one he should not carry. And thankfully Brian stepped up to fill that role and you were then blessed to have a dad that lived up to that name and honored that role in your life.

Those bad memories are the ones that keep me awake at night…you were so little…so amazing…so innocent…it was him and not you…I wish you could have seen that…I know you ached and pleaded your entire life for his approval….which he did not deserve. The things he called you, the way he treated you he should have been looking into a mirror…it wasn’t you…it was never you.

You were an amazing child. You were full of life. You had a spark. You always made people laugh…you always were there for me…you were my tag along. I wish I could have protected you more.

No child should ever have to go through what you did. You were so strong to come through that the way you did.

You were such a talent. There was nothing you set your mind to that you didn’t master.

I remember when you took up guitar, it wasn’t soon before long that your guitar teacher would tell you he could teach you nothing more because you were so talented.

When you started to tattoo I was terrified…I can’t scribble so the thought that my artwork would be on someone my my hand was a nightmare to me…but then I saw your work…I was taken back. Your work was beautiful…with each person you tattooed you formed a relationship with…even if it was just for that session.

You helped them choose something meaningful to them…

So much of me is sad all of your tattoos will be gone..you were a work of art…but Hailey posted a link about drawings in the sand…and that is what I believe they were…just because they didn’t last forever doesn’t take away any of their beauty.

Your body was a masterpiece…I remember you getting a tattoo for me…a teal ribbon with hope, faith and love scrolled across for my battle with cancer.

It meant so much to me…but what meant more to me was how you were there for me in that scary time.

I remember after my surgery and not being able to shower having the stitches across my throat…I could barely move my head. You helped my wash my hair, you said you wanted me to feel as normal as I could. You held a bucket while I laid on the couch and carefully washed my hair, asking me if I was ok every two seconds.

You took such good care of me.

I remember you driving a million miles an hour to the hospital when I had the twins. You were shaking and rushed to hug me. You ran into the OR because you knew I was somewhere and you had to find me. I was so happy to see you…I was so scared and even though I was falling apart you still made me laugh and feel better and assured me that they would be ok.

You were such a wonderful uncle…I think that is the part that hurts worst for me….my babies will never get to know their crazy uncle Zack…

I can’t even allow that to sink in…

While I vow to keep you alive I know it just wont be the same…I can’t get Noah to talk but at 18 months you had him snapping and beat boxing…you had a way with him.

Mom gave me your baby blanket…I didn’t even know you kept it…it smells like you.

It is tattered and worn, but God it smells like you.

When they handed it to me I buried my face deep into it…I remembered hugging you the last time you were here…it was after your heart was broken  the first time…you told me how much you wanted the life Kevin and I had…but I told you how proud I was of you…how you had made yourself into someone…something. That I was just a mom, with a messy house, Kevin and I never could figure out what to make for dinner and the kids were always crying and the dogs drove us crazy. That you went out and became who you wanted to be, that you didn’t quit when it got hard, that you rose up out of the ashes like a pheonix, you had all the odds against you but you over came them. I told you how much I loved you and how proud I was of you and hugged you…you were so much taller than me that my head was always buried in your chest…that is what your blanket smells like.

Zack you were a good person. You were such a gift in my life. No matter what anyone says I know the real story….I know…it doesn’t matter what anyone says…I know.

I am sorry for what you were put through – it was wrong – very wrong. You deserved so much better.

Your life and you are not tainted to me.

I know God knows your heart, God saw what they did to you, God saw how you were treated and how hard you tried.

I am trying to find some peace that you are at peace now…but I am selfish and want you back.

I would give anything.

I want you to know I will live for you.

I will carry you with me…you are in my heart. I will grow old for you…I will love for you…I will laugh for you. I will take care of Brian, Mom and Spencer…I will take care of Kevin, he really misses you….I will be crazy and wild for the boys like you would have. We will all take care of each other.

You will continue to live through me.

And I will live more like you…

I will seize the day.

I just wish I could have reached you a little deeper…I wish I could have hugged you one more time…I wish I could have taken our fathers words and burned them from your memory…I wish I could have protected you from the abuse of this year… I wish I could have said I love you more…I wish you were still here.

I know you know how much you were loved..

My baby brother…I was blessed to be your sister…

I am so, so sorry.

zack wolf love

unclezack

unclecoloringbook

holdingnoah

zackwedding

 

The first step.

One normal day about two months ago I made the step.

 

It was sunny, bright beautiful day. I didn’t care.

 

I realized it was better than the snow and seemingly never ending winter we had been plagued with but I really didn’t care.

 

This was really nothing new, at some point amidst the trauma of the NICU I stopped feeling happy. It is like my body literally could not process happiness.

 

It feels like my happiness receptor is broken 95% of the time. Noah and the twins can still do something to make me smile and feel that spark and a good hug from the husband always cuts through the darkness but other than that I feel pretty numb.

 

That bright sunny boring day I was folding laundry and I just started to cry.

 

This deep painful ache, this unshakable sadness, this overwhelming constant anxiety got to its breaking point.

 

I had a number lost in my email inbox for a referral to a doctor and counselor, I quickly looked it up and nervously dialed the number. Then hung up.

 

How did I get here?

 

I paused, I have long suspected I needed someone to talk to. I have always had anxiety, my biological dad was anything but a good parent, my journey with cancer left me deeply shaken but this year really did me in.

 

I just wanted to will myself to get better. I wanted to be happy on my own. I wanted to shake it off.

 

But that never happened, these crying days were happening more and more frequently and with every passing day it seemed like all my symptoms were only getting worse.

 

I do not ask for help.

 

Really, you can ask anyone. Ask my mom or mother in law, really. They offer every day and any day to help and I don’t take them up on it.

 

So for me to ask someone, a stranger, for help with stuff that I don’t even like to admit that I am going through was near impossible.

 

I picked up the phone and dialed the number again.

 

A sweet lady answered and we went through my past year.

 

All three boys were napping and I was sitting on the bathroom floor sobbing into the phone to this poor stranger.

She comforted me and made my appointment.

 

It was a month away but it made me feel skeptically hopeful.

 

The day of the appointment came and Kevin drove me. If he wouldn’t have, I would not have walked into that building.

 

My first appointment was 2 hours long. She asked to see me the next day for another hour long appointment since the first appointment was basically a lot of paper work.

 

After that appointment I felt actually hopeful.

 

After an hour of talking she leaned over and answered my unspoken fear, “you are not broken, you are hurting, you are grieving, you are wounded, but you are not broken.”

 

For someone to say I wasn’t broken, meant I was fixable.

 

This hurt didn’t have to be forever. I didn’t have to struggle with every single aspect of my life.

 

That maybe one day I could be me again.

 

Many of you might wonder why I am writing this, it is because of the stigma with all of this. There is such a stigma to seeking help. Especially for mothers.

 

One of the most ass backward things of the past year is that I had a lactation consultant all over me for 6 months. Seriously. One from the hospital they were born at, one from the NICU and one from our insurance.

 

Some days I got 5 phone calls in ONE day about my breast milk.

 

How much are you getting in one pumping? How often are you pumping? How long on each side? Have you tried fenugreek? Eating oatmeal? Massaging? Basil or fennel oil? Mother’s milk tea? Have you talked to your OB about medication? How much milk will you be bringing in today? How are you feeling about breastfeeding? To you think you could try looking at a picture of them when you pump? How about you pump every 10 minutes for 15 minutes for an hour every day? Can you be here for every feed to breast feed tomorrow? Etc…etc…etc…

 

It surprised me that they were so focused on me and my milk that everyone seemed to forget that yes, breast is best but a healthy mom is more important…one of the biggest killers of a healthy milk supply is stress.

 

I was really shocked that admits this horrifically traumatizing experience the only people that ever seemed to get what we were going through besides our family were the nurses and we felt embarrassed leaning on them. I can’t tell you how many times they saw me cry. It was embarrassing. It was usually when everything was all ok, in the eye of one of the many hurricanes. It was only when things slowed down that my mind would actually allow itself to break down.

 

No one seemed to get there wasn’t time to get help for me, I was pumping 10 hours a day, going to the NICU every day and still trying to be a fully present mother for my toddler who was traumatized from all of this and deal with life in general. When could I even wrap my brain around the thought of getting help?

 

I just wish there was some program like the breast is best movement for parents with children in the NICU that isn’t a support group. We could have gone to a support group with other parents that had been in the NICU but we never could make the time because it meant taking time away from Aiden, Evan or Noah.

 

I just wish there was a program, a reach out that helped guide you through.

 

Walking through the NICU doors every day was like taking a step off of a cliff.

 

Calling the NICU was so terrifying I couldn’t do it. Kevin had to call and he would call me with the updates. I was so afraid to hear bad news.

 

Every moment of those 4+ months was a step into the unknown, we had no idea how to cope, how to survive it or if we even would mentally survive it.

 

There isn’t any amount of help or advice that makes the NICU any easier but something would have been nice. The NICU is a delicate line of Heaven and Hell. The biggest miracles occur everyday there, we have our very own. But at the same time the biggest tragedies occur along side those miracles.

 

Having your child hanging in the balance of the NICU and not knowing the path they will take is unbearable.

 

It is as if our journey in the NICU was that of a journey on a tight rope while carrying your children on our shoulders and every diagnosis or problem a weight. The tense, fearful, wobbly, heavy walk across has changed who I am.

 

And now that things have calmed down from what they were, they are no where near calm I have taken the step to get help.

 

Mainly so I can help my boys, all four of them.

 

I love them with all of my heart and they deserve better than this.

 

I hope that these steps are the ones that take me back to me…because I miss being me. 

 

Image

Waiting in the waiting room…
hoping these first steps put me on the right path.

Digging out of the ruins.

I finally feel like I am in a place where I can allow myself to move forward.

Since the twins were born I have felt frozen in time. To me I still feel like I should be planning Thanksgiving dinner and Christmas.

This year blew straight past me, actually it ran over me like a train.

This time last year I was eating healthy, loosing weight, had a successful Etsy business and my future looked predictably happy. My kind of happy, a control freaks dream.

But life isn’t like that.

So here I am standing on the other side of the Hell my family was just drug through ready to brush off and walk forward.

It is a hard thing moving forward after a trauma, because you are all too aware you could be walking toward another trauma and you have to pick up all the shattered pieces of your life from the last trauma.

So I stayed paralyzed in my own personal Hell.

My mind never left my bedrest, the end to my pregnancy or the NICU. It is like all that pregnancy nesting took made a little nest in the middle of a hurricane.

I couldn’t leave the nest because leaving the nest meant accepting where my life had placed me.

And quiet frankly I didn’t want to.

I didn’t want to accept the lives my twins were handed because as their mom witnessing their first months on Earth filled with pain, tubes, tests, surgeries, near death experiences and diagnosis after diagnosis their future seemed so much more fragile.

I faced a new role, I was a mom of three, could I be enough?

I had to accept what and who I had become. I gained the baby weight with the twins and then some (and by some I mean A LOT) because eating was just about the only thing I did to get through this year.

I had to accept that I was “broken”. That I had post traumatic stress disorder, that I was depressed and needed help controlling my anxiety.

I had to make plans to fix both these things.

I didn’t want to do any of this.

But I am a mom, a mom to three beautiful boys, a wife to an amazing man and I NEEDED to do these things for them.

I NEEDED to do this for me.

Over the past month I have slowly started to see more clearly what I need and what my family needs.

And I wanted to do it.

I feel like the hurricane passed months ago but the clouds, flood waters and ruin all remained.
So now it is time to rebuild and clean up.

Time to move forward.