Chasing clocks

It’s been forever since I wrote in my blog. I usually write all of our updates on Facebook and in Elliot’s Army page, but this is a post of a different nature. One that I have been struggling with. I’m not even sure how to put it into words or how to accurately relay my feelings…but I have to try. I have to get this off my chest so I can try to find a sense of peace amongst the chaos.

We just returned home from another extended hospital stay. Number-I-lost-count-at-this-point. I use to know the number of days we spent inpatient over the past year, but I lost track around the 100-ish mark…which was several months ago.

And while each hospital stay is exhausting on every level…physically, emotionally, and mentally…the return home gets harder and harder each time, too. I count down the days until we are able to pack that tiny hospital room and say goodbye to that sorry excuse for a bed, but the reality is, I struggle the moment I walk through my front door. All around me are the reminders of what I missed. A lot changes in just a few weeks. And those weeks quickly start to add up. They rolled in to months and before I knew it, an entire year has just passed. And I know I can never get that time back.

This can be such a lonely place. Inside and outside of the hospital. Inside that tiny room I am alone with a sick child. No family. No friends. 6 hours away from the people who love us the most. Over the past year, we have had 4 visitors.

.4 total.

4 dear friends who packed up their lives for the day and traveled to see us, to give us some sort of normalcy. Do you have any idea how good it feels to just hug someone when you have been fighting for your child’s life…alone?

I do.

Outside of the hospital, a different type of loneliness sets it. It’s the loneliness of the reality of this life. One that not many people can understand or relate to, unless they have truly lived and breathed it.

And I don’t wish that upon anyone.

After returning from the hospital a few nights ago, I opened our bathroom cabinet to put something away, and it was a huge disaster. Nail polish, hair brushes, curling irons, toilet paper, bathroom supplies…spilled everywhere. And I lost it. I sat on that bathroom floor, staring at the cabinet, crying for an hour.

I couldn’t get up.

I couldn’t move.

I just sat there and cried. You see, I had just cleaned and organized that cabinet just a few days before we were abruptly admitted to the hospital. And here that cabinet was, in complete chaos again. I wasn’t crying because the cabinet was a mess…that’s how life goes with 4 kids…I broke down because I felt like that cabinet at that very moment. Everything put together and calm one minute and the next, it’s ripped apart again and I’m scrambling to put it all back together.

So I am left with 2 options…either frantically try to pick up the pieces of what I missed, or accept that it’s gone. See the thing is, you quickly realize that life went on without you. Everyone has gone on living their life while you were away. You are plucked from your life in an instant and dropped back in to it weeks later. You try like hell to catch up, but it becomes more and more impossible with each hospital stay.

I am forever chasing the clock. And in turn, it forever chases me. Because the moment we leave that hospital floor, I know the countdown begins to when we will return again.

I am learning that all I can do is try to live in the moment. Enjoy the things and people who make me the most happy…and hold on to faith that this will not be our life forever.

…not my first rodeo

I often get told, “You are so strong!” Or “I don’t know how you do it.” The truth of the matter is, this isn’t the first (or second) time we have faced the challenges of having a special needs child. Many of our new friends have no idea the struggles we have faced in the past 8 years. At my lowest point, I questioned God and asked him what we did to deserve the circumstances we were facing.

When Brayden was born (December 31st, 2008) he was a very, very sick little boy. When he was just 6 weeks old he was admitted into the hospital and spent the next year fighting for his life. Literally fought for every, single breath for months. He went on life support, he required blood transfusions, 11 surgeries and procedures, a ventilator breathing for him, medically induced comas. It was brutal. It was hell. Ironically enough, the same doctor that saved Brayden’s life is the same doctor fighting for Elliot’s.

Brayden at 3 months old

When Brayden was finally released from the hospital we thought the worst was behind us. And then red flags began to pop up again. Brayden wasn’t babbling. He wasn’t responding to loud noises or voices. We could literally clap our hands next to his ear and he would even blink. Something was wrong. Very, very wrong. Very quickly Brayden was diagnosed with a severe sensorineural hearing loss. He was fitted for hearing aids at 8 months old and began intensive speech therapy and sign language.

…but it didn’t stop there…

Brayden was delayed. Delayed in speech, gross motor development and fine motor development. We believed it was weakness from spending so many months in a hospital bed. Unable to “practice” his baby skills. We began intensive physical and occupational therapy to get him back on track as quickly as possible. After 4 months his therapists dropped a bomb on us, they believed Brayden had cerebral palsy and needed to be seen by a neurologist. At that appointment, their intuition was confirmed. Brayden was diagnosed with Spastic Cerebral Palsy with hypertonia and right sided-weakness. We were told they did not know if he would ever walk and *IF* he did it would be very limited and impaired. We got to work. And worked HARD. We made the nearly 90 mile round trip to PT, OT, speech and feeding therapy 5 days a week for years. His prognosis began to change…from *IF* he’ll walk  to “When he’ll walk.” Brayden took his first steps just before his second birthday! Defying everything they believed would be his future. It was about this time that we noticed he started ripping out his hearing aids every chance he got. I was convinced he could hear again and his dr agreed to preform a hearing test under anesthesia to confirm. I’ll never forget when his dr came out from the OR with tears in his eyes. He said, “I don’t know how. And I don’t know why. But he can hear again.” A permanent hearing loss, by some miracle, had reversed itself.

Brayden’s hearing aids and helmet

Just as life began to calm down and Brayden was on a path to health and healing, we noticed some very odd behaviors in Reese (our now, 9 year old daughter). Her sleep patterns were severely disrupted. My “perfect sleeper” would now wake up in the middle of the night and stare blankly at walls for 4-6 hours at a time. One morning, out of the blue, she started walking on her tippy-toes and could no longer walk flat-footed. Despite drs telling me that, “she just wanted to be a ballerina” I knew there was something seriously wrong. I fought and pushed for answers and at just 3 years old she was diagnosed with 2 forms of epilepsy… one of which is very, very rare. She was admitted into the hospital where her EEG lit up like a Christmas tree. Her brain activity was grossly abnormal and she was seizing throughout the day and relentlessly at night. It was also the underlying reason behind her severe toe-walking.

Reese in Cleveland Clinic where she spent a week hooked to EEG

She began a strict medication regimen and started intensive physical therapy to retrain and stretch her muscles in hopes that she would regain her range of motion. After a year of therapy and minimal progress, we were left with 2 options: surgery or serial casting. We opted for the casting. Reese was fitted for knee high casts on both of her legs. She carried them around on her tiny body for 10 weeks and never complained. She sat through 2-3 hour appointments every week to have them changed and never complained. She endured the pain and discomfort and never complained. I have never witnessed such resilience in a child. Always smiling. Always happy. Always hardworking.

Reese’s casts

My husband and I had always discussed having 4 children, but after the medical issues our children had faced we were very concerned about the possibility of an underlying genetic issue. Both of our children and ourselves underwent genetic testing and we counseled with a reproductive specialist. We were ultimately told that both children’s medical diagnosis’ were isolated issues and we were not at risk if we decided to go forward with our decision to grow our family. Their cases were a “fluke.” I clearly remember the geneticist telling us.

…and yet we wait.

We waited several more years until we felt our children were in a medically stable place. We ultimately decided that our family was not complete and we began to try for Elliot.

When Elliot became sick I felt a sense of guilt that I had never experienced before. I felt so guity that our decision to have another child meant another sick baby. I vividly remember leaving a drs appointment with Elliot and having to pull over on the side of I-94 because I was crying so hard. I was on the phone with my mom at the time and told her I had never wanted to put another child through a medically complicated life. That I felt mislead. We had done all of the testing. We had waited a long time. Thought long and hard about our decision.  Prayed about it. I now know that nothing could have been done to prevent whatever “this” is that Elliot has. And there was no way to predict or test for it…because we truly have no idea exactly what “this” is. Once again, it was a “fluke.”

My point of this (very long post) is that I am not the strong one…my children are. They have fought, overcome and defied odds. They are resilient and brave. They have been through more surgeries, testing, anesthesia, pokes and pain than most of us will ever endure in a lifetime. The truth of the matter is, I am not strong. I draw my strength from them. They are my inspiration, my driving force, the reason I wake up and fight each and everyday.

This certainly isn’t our first rodeo, but you can bet your ass we are going to grab this bull by the horns and bring it down like we always have.

(Below is the link to Brayden’s Journey. It is the story of our sweet boy and all that he endured in just the first few months.)

As fate would have it…

Have you ever had something happen that confirms fate truly does exist?! Something that is so unexpected. Something that requires the stars to truly align and forces to come together?

Tonight was one of those times.

For those who do not know, Elliot has a “twin.”

Wait!

Let me explain, for many, many months Elliot’s specialist, Dr. Doshi, has told me that Elliot has a “twin.” A little boy, just a few months older than Elliot with the exact same symptoms. They present the same way. They react the same way. And their biopsies look identical. Many people have heard me refer to Elliot’s “twin,” especially after leaving a follow-up appointment where we discussed these two puzzling and sick little boys at great lengths. His Dr has told me time and time again that whatever disorder “it” was, they both most definitely had “it” and he was on a mission to figure “it” out. At Elliot’s follow up last week, we were discussing Elliot and naturally his “twin” came into the conversation, as he always does. As we wrapped up our appointment I told his Dr to PLEASE give the mother my contact information because I so desperately wanted to connect with another mother who just “gets it.” I left the office hopeful that we would someday find out who this mystery “twin” was. A little boy I felt so connected to, yet I didn’t even know his name.

Flash forward to tonight.

After a couple of months of email communication, I finally jumped on our first conference call with the founding president and VP of the International FPIES Association. As many people know, I am now on the board for the I-FPIES organization and donating my time to this amazing cause. I will be helping to spread awareness, education and raising funds for research that is so desperately needed. During this call we were speaking live to introduce ourselves, organize and strategize. We went through each person and I was the last one to speak. I spoke a little bit about myself and shared Elliot’s story to the group. It is so very empowering to speak to a group of people who fully and truly understand the magnitude of his disorders. At the end of speaking, a woman on the call asked me where I lived. I replied, “Michigan.” She proceeded to ask if Elliot was a patient of Dr. Doshi and of course I replied “yes.”

“Nico is Elliot’s twin!”

I immediately knew it was her. I cannot even begin to tell you the emotions that ran through me at that moment. I literally wanted to jump through the phone and hug this mother and her son. Tears filled my eyes because I was so grateful that fate and this amazing organization had brought us together. She said she was holding her breath while I was speaking because she didn’t want to interrupt, but just knew it had to be her son’s “twin.” This call included people from coast to coast…quite literally. From New Jersey to California.

…And here she was.

The mother I have thought about so often. Prayed for. Lost sleep over. Longed to meet. To connect to.

Here she was.

Volunteering her time to help other children who are just like her precious boy, just as I am doing for mine.

I have never in my life felt so connected to a complete stranger. I know exactly how she feels. Her fears. Her hopes. Her dreams. Her pain. HER struggle.

I am her.

Elliot has finally found his twin…and I just may have found mine, too.

Processing…Hold please.

***disclaimer. This is not one of my typical blogs. It is not eloquent or thoughtful. It is simply information. I am not sure what I am feeling at the moment and I am still processing.

Have you ever received news that you thought you were prepared to hear…but in all actuality it hits you like a ton of bricks? It seems as if there is a serious disconnect between assumptions and validation sometimes.

Yesterday, July 22, we finally received the results of Elliot’s biopsies that were done 3+ months ago. We have been waiting so long…anxiously, impatiently waiting. And yet, when the phone rang I wasn’t ready. I wasn’t ready to hear what they had to say. I have fought so hard to finally get these results and at that moment I wanted to ignore the call and go about my day. Instead, I answered.

They explained that Elliot’s biopsies showed spindal shaped cells throughout his entire biopsy report. Meaning, these are present from his esophagus all the way down to his colon. These cells are indicative of Mast Cells. Mast Cells are vital to life and the immune system. They are fighter cells that help to react to allergens or stimuli. But just like all good things…too much is never good. As in the case with Elliot.

Forgive me because this is all very forgien to me. Yes, I have a medical background and education, but Mast Cell disorders are extremely rare and not something that is taught in nursing school. I am slowly navigating my way through the information and trying to process as much as possible. It is a difficult disorder to understand so I am feeling very overwhelmed at the moment. I have had a lot of people reach out to me, asking for an update so I am trying to share what we know at this point:

1.) Mast Cell is a lifelong condition, likely with an underlying genetic component. Unlike his FPIES there is no chance Elliot will ever outgrow this. The hope is to find a medication regimen that is effective and identify specific triggers that we must avoid. Some people have had success with their disorder going dormant for periods of time (sort of like a remission)

2.) Elliot will begin a strict medication regimen. This will include 4 different medications given multiple times a day. One medication is not yet FDA approved in the US so it is being shipped from Clark Pharmaceuticals in Washington (the only place that carries it). His other medications are being created by a special compounding pharmacy because they have to be free and clear of any dyes, fillers, alcohol, ect.

3.) His specialist is referring us to the National Institute of Health (NIH) in Massachusetts where they are currently conducting clinical studies on Mast Cell disorders. The hope is to get Elliot into a study and have a team there to help manage him.

4.) There are a few types of Mast Cell disorders (different categories). At this point, I am not sure what “form” he has. And if I am understanding correctly, the only way to confirm is by conducting a bone marrow biopsy. Some forms are “better” than others. Attacks can range from vomiting, rashes, itching, stomach pain and lead to life threatening episodes of anaphylaxis and shock.

5.) Our lifestyle will be drastically changing. The list of “triggers” is endless. We understand we cannot control every environment we enter, but that means we have to make our home as safe as possible for him. Triggers can include: scents, perfumes, chemicals, heat, cold, sunlight, friction, emotional stress, fatigue, food,  alcohol, insect bites, preservatives, dyes, certain medications, infection, fevers….the list is extreme. So if you’re reading this and want to come visit us, please leave the cologne and perfume at home and make sure you’re healthy! 😉

6.) In order to identify triggers we must keep a very specific log of our daily activities, his mood, behavior, anything he has ingested, ect. It is all about connecting the dots to figure out what triggers his Mast Cells to attack.

7.) The medication regimen will take a month before it is fully effective. Once we begin to trial food again, we must find the “purest” forms that we can. This includes organic fruits and vegetables. Organic grass fed beef, free range-organic fed chicken, ect.

8.)  I am going to continue to breastfeed for as long as possible. His biopsies indicate that he is still reacting to things through the breastmilk (and/or environmental triggers) but it is all we have right now and on a day to day basis he does not seem to be in pain or experiencing typical Mast Cell symptoms.

9.) We are still working on a safe formula for him. We were doing really well with the EleCare Junior Vanilla (and he didn’t seem to mind drinking it too much) But we have since run out. And insurance is being difficult. They do not want to cover the cost even though it is prescription only formula and is medically necessary. WHY does EVERYTHING have to be such a fight…especially when it comes to dealing with a sick child. The out of pocket cost is unrealistic and ridiculous.

10.) This is a huge learning process for us. We are dealing with news that it very difficult to swallow and trying to tread uncharted waters at the same time. I am wavering between anger, sadness, guilt and relief that we finally have some more answers.

If you have taken the time to read this…thank you! We are doing the best we can to ensure Elliot is safe and you are part of that as well 🙂

I will post another blog when I have processed how I am feeling a little bit more…so in the meantime, please hold.

365.

Tonight, I held Elliot and nursed him before bed. The same as I have done for the last 365 days. Sure, his long legs dangle over my lap now and he is often distracted by every, single noise that he hears…but not much else has changed since that little crazy-haired baby was placed into my arms in the recovery room, where he nursed like a champ for a full 20 minutes.

Tonight, I stared  down at him in disbelief that an entire 365 days have come and gone. At times, it feels like the longest year of my life. We have faced more obstacles and medical challenges than I ever imagined possible. But most of the time, I feel as if I blinked and my newborn became a toddler overnight. How is it possible?

Tonight, I celebrated a small victory. Hell, who am I kidding!? A HUGE victory. My body has nurished his little body for an entire 365 days. Without the help of baby food, formula or “real people” food. Just me, providing for him, by any means necessary. You see, I have nursed all 4 of my children. And it has been a rewarding sacrifice each time. But this time was different. This is a necessity for him. He depends on me solely and it’s a job that I absolutely cannot fail at.

Tonight, I thought about the rollercoaster we have been on for the last 365 days. The weight checks, the weekly appointments, the guilt, the diet restrictions, the ambulance rides, the hospital stays, the fight for answers, the fear of the unknown, my love/hate relationship with that damn pump. The smiles, the milestones met, the gains made, the happiness that this little baby has brought to our family.

Tonight, after he finished eating for the last time before bed, I kissed his little (still) crazy-haired head and whispered to him, “We did it, buddy.” We are a team and together we made it a full 365 days. I may not know what the future has in store for us, but, for now and for the last 365 days,  I have simply been enough for him and THAT’s worth celebrating.

Perfectly Imperfect Mother…

“Who are you to judge the life I live? I know I am not perfect and I don’t live to be.  But before you start pointing fingers, make sure your hands are clean.” -Bob Marely

Dear perfectly imperfect mother,

I see your pain.  I hear your cries.  I empathize with you.

We try.  We struggle.  We fall down.

We yell.  We take for granted. We are reminded.

We love fiercely. We sacrifice immensely. We would lay down our own lives for the lives of our children without a second thought.

But alas, that is sometimes not enough.

Mistakes happen. Accidents are tragic. We fail.

And although this may only serve as some small condolence; I do not judge.  I do not blame. I do not mock your shortcomings.  Because I, too, am a perfectly imperfect mother.

I will not sign petitions to have your children removed from your care because you were distracted for moments at the zoo.  I will not mock your intelligence for not acknowledging the “No swimming signs” at your 5-star luxury resort.  I will not call you a “murderer” because, in your sleep-deprived daze, you forgot your napping baby in the backseat of your hot car.  I will not assume you are careless because you left the gate unlocked and the family swimming pool was just too enticing for your 2 year old to resist.

Instead, my heart will break for you.  My heart will break for the unbearable pain and sadness you are left to comprehend.  My heart will break because I know yours is shattered into oblivion. My heart will break for you and the permanent, empty hole that is now left in yours.  My heart will break for the guilt and shame you are experiencing, because it is surely enough for a million lifetimes.

…But yet, you are ridiculed.  Instead of embracing you with love, you are called, “unfit” and “lazy.” Instead of surrounding you with compassion,  you are met with the remarks, “You should have been paying closer attention.”  Even as your toddlers lifeless body is recovered from the bottom of a lake, you are taunted for your severe oversight.

Mistakes happen. Accidents are tragic. We fail.

But amongst the noise.  Behind all of the “flawless” mothers. For every judgmental remark…

I see your pain.  I hear your cries. I empathize with you.

I do not judge.  I do not blame. I do not mock your shortcomings. Because I, too, am a perfectly imperfect mother.

Laundry room mocking…

“They broke bread in their homes and ate together with glad and sincere hearts”

During one of my impromptu visits to Hobby Lobby (they happen more than I would like to admit!) I came across a shabby chic wooden wall piece with that quote on it. I fell in love. It goes perfectly with my style. And I knew instantly where I would hang it in my home. You see, my walls are somewhat bare at the moment. We repainted our entire main floor a couple of years ago (yes, YEARS) and I honestly never put it entirely back together. I have slowly been adding pieces here and there. Taking my time, picking out the perfect ones. So when this caught my eye I thought, “Yes! One step closer to filling these blank spaces!” Threw it in the cart without a second though. Slid the credit card. Took that baby home!

But several weeks later it is still not hung. It currently found it’s home in our laundry room amongst the clutter and endless piles of laundry. (You have no idea how much laundry a family of 6 produces. Mass amounts!) It isn’t sitting in there because I am unsure if I still love it as much as I did when I first laid eyes on it in the store. Nope, still in love with it. It isn’t because I don’t know where to hang it. Nope, I had the perfect wall picked out before it was even in my cart. It isn’t because I haven’t had time to hang it. Don’t get me wrong, we are insanely busy people, but my husband can testify that if I want something done I am not the most patient of people.

Nope. None of the above statements are true. This perfect wall piece remains amongst the piles of laundry and clutter because it is a false statement in our home. The quote is a sad reminder of struggles, tears, fights, trials, fails and pain.

“They broke bread in their homes and ate together with glad and sincere hearts”

For those who know the obstacles we have faced, this will be very easy for you to understand. For those unfamiliar with Elliot’s story, I’ll give you the cliff notes version. Elliot has a rare and severe disorder, Food Protien Induced Enterocolitis Syndrome (or FPIES for short). It is also believed that he has a Mast Cell Activation Disorder and/or some other underlying condition (biopsies are currently pending). In a nutshell, Elliot is nearly 11.5 months old and can only consume “safe” breastmilk (and it is only “safe” if I remain on a restricted diet to ensure no allergens pass to him.) He is quite literally allergic to every, single food…and as we found out a few weeks ago, paper, as well. He is allergic to the proteins that make up food…and every food is made up of proteins. His reactions induce severe vomiting, diarrhea, pain and can cause his little body to go into shock very quickly. There is much more involved, but you get the picture.

So for many months now, food has not been my “friend.” Between the diet I am on…which I loath at this point! Over-analyzing everything I eat (Will it hurt him? Is it safe? Any hidden ingredients?) Waiting for reactions to begin. And when they begin, how severe will they be? Being on high alert 24/7 ensuring he doesn’t find the smallest of crumbs left behind.

So no, we no longer, “break bread with glad and sincere hearts.” No, instead, we give our baby an empty spoon, a straw and a mesh feeder bag filled with ice cubes at each meal. That does not constitute as, “eating together.” But we try to keep some sort of consistency and normalcy for him. We do not have “glad and sincere hearts” as we watch him imitate our mouth movements as we are eating, knowing how badly he wants to eat, too. It is a helpless  feeling to watch your baby stare at you while you eat. Unable to feed him. Denying him of a basic human instinct and necessity. We do not have “glad hearts”  when we discuss how badly we wish we could give him just one, small bite of our mashed potatoes or a little taste of ice cream. Mealtime isn’t a celebrated event in our home anymore. It hasn’t been for a long time. Instead, it is a constant reminder that we are struggling.

Oh, and that perfect wall I wanted to hang it on? Ironically enough, it is the same wall that Elliot’s barely used highchair sits on. Cruel joke.

So for now, my beloved wall piece remains mocking me from the depths of hell (aka my laundry room) until further notice. To most, it is just a beautiful quote that may remind them of happy times spent with loved ones or memories that will soon be made. After all, food is the root of most celebrations. But for me, it leaves me longing for the day that my family can break bread and eat together with glad and sincere hearts. Because what a celebration that will be…

***please feel free to like, comment, and SHARE! My mission is to make FPIES a household name. Far too much is unknown about this terrible disorder and spreading awareness is key.