I wrote you a letter in purple pen. I was high again. Relapsed the day before after having 6 months clean, and I knew that you knew I was high the last time I saw you at the Care Center. I felt so guilty because I felt like I was crawling out of my skin to get out of that room.
Not because I didn’t want to see you, but there was nothing to do in there with your hospital bed; you could barely get out of and the TV was constantly running. We talked about how you needed to find a new place to live and how I could live with you again and help you out, writing all these ideas and plans.
A few days later, I helped pack up your apartment, trying to save everything because I knew how much you loved all your knick-knacks and junk. You and I were always the sentimental ones. After going through and packing it all up, putting it into storage, just until you were out of the Care Center.
I should have come to see you. I was literally just down the street. Wouldn’t have taken more than 10 minutes to see you. But I was coming down.
All I could think was lets’s get this done so I can go pick up. I didn’t even stop by or call you that day.
I went to the park after getting my fix and started writing you a letter. Telling you how sorry I was that I wasn’t the best kid, and didn’t always appreciate you, and that I know you did your best with what you could; that I loved you.
The next day I was at work and get a call from grandma.
She tells me that you had a heart attack, and you were gone.
This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
In 2020:
I will love everyone – strangers, dear ones, and myself – on my worst and best days.
I will keep the faith, in all ways.
I will seek adventure. I will seek new travel opportunities. I will adventure through created worlds – mostly through stories of fiction – and discover new places, people, and times. I will cease seeking to exert control over everything, thus making myself more open to spontaneity and going with “the flow” of life.
I will grow, unfortunately not in height, but in more ways than I can begin to imagine.
I will learn the importance of patience. I will believe in patience as a virtue. I will understand that good things come to those who wait, and I will wait. I will be proactive in my waiting.
I will find balance. Balance between work and pleasure. Balance between emotions. Balance between my head and my heart. Balance within. I will find my force.
I will practice openness. I will open my mind to new ways of thinking and new ideas. I will be less restrained, in most ways.
I will work to further my dreams.
I will live and write my story as my best self and in the best ways possible.
Aunt Becky’s daughter, Amelia, is the sole reason that The Band exists. Amelia, like so many of our children, was born with a birth defect called an encephalocele. She’s gone on to vigorously beat neurosurgery and the odds stacked firmly against her.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
She was born in September. It was hot. And in 12 weeks, we would be speaking a new language.
My baby was just 2 days old when we learned that our “perfect” world was not to be. My whole life I dreamed of motherhood. It’s what I wanted to do, more than anything. Be a good mom. Raise a family. Teach a little person about my faith.
Rewind to my college days – I was one of those students that changed majors more than once. First I was going to be a teacher; I majored in elementary education. Then after two summers directing a summer camp, I learned that wasn’t really for me. I wasn’t a fan of the parental drama.
Then I was an accounting major. I was going to be a CPA. Then I realized I needed more and ended up an accounting minor with a business administration major in both finance and marketing.
But none of that told me what I wanted to do with my life.
All I cared about was that someday I was going to get to be a mom.
I married my high school sweetheart. We’ve been together since 1992. We got married. Got jobs and got ready to have the “perfectly perfect normal life” that we’d always planned. God has a funny sense of humor sometimes.
And then almost 3 years after we got married, 11 years after we first met, we had Natalie.
And then in 2 days, our world was rocked.
Her bilirubin level of 22 just would not go down.
Our family doctor made the decision to send her to a bigger hospital in a bigger city. He told us that his ego was small enough that he knew that she could get better care and more answers there. The ambulance drove away, and we felt terribly alone. She was whisked away to a NICU and our baptism into a world of medicine was begun.
Our baptism was truly begun with a Baptism.
Natalie was taken to a NICU in a town an hour away from where she was born.
My baby sister Bridget was taken from the same hospital to an ICU just 21 years before, after she was born. She never returned home.
I know that was on my dad’s mind.
My baby sister was born with Transposition of the Great Vessels. She lived 7 days. She was operated on by a fantastic surgeon, who just happened to be the very same surgeon who would perform our daughter Natalie’s very first surgery, a cholangiogram.
The surgeon did his fellowship at Children’s Memorial in Chicago. This same place where Natalie would someday have her liver transplant.
So many coincidences…
Our NICU surgeon made the comment to us that is the title of this entry, “We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it…”
I don’t hold a single ounce of ill will toward the man. Natalie’s case confused everyone.
She was born with a gallbladder. Albeit a shriveled, ugly, non-working gallbladder. But a gallbladder, nonetheless. And that’s just not common in Biliary Atresia.
In “classic” biliary atresia, by the time most kids are born, their bile duct structure (gallbladder included) has shriveled up and is not working. But Natalie was born 5 weeks early, and it’s a progressive disease – meaning it gets worse as time goes by.
Back to my dad. He’d seen things end badly for his child. I know he had his grandbaby’s soul in mind when he told me that we needed to baptize her.
I am a Catholic.
New babies = Baptism is second nature for me. But the reality of this was too much to bear. I’d had the story of Bridget’s birth and death memorized. I was 4 when she died. Her death is my very first memory. Her death prepared me for my future role, of that I am now certain. But in that moment, I could not face it.
Here I was 2 days after the birth of my child.
I’d had pre-eclampsia. I was induced just two days before following 35 weeks of pregnancy. I was a swollen, puffy blob, having gained 30 pounds in the last month of my pregnancy alone. My husband said that the moment I gave birth to our daughter, my blood pressure had skyrocketed to 250/204. No joke. I was given magnesium to prevent a stroke or a seizure.
My mind was so fuzzy.
I was still in shock.
I wanted my “normal” life back!
I was in denial.
This wasn’t happening.
Why was my dad suggesting that we baptize my baby? Did he think she was going to die? I dug my heels in. (At least I tried to. I could only fit my fat feet into a chewed up pair of black sandals – that my German Shepherd had gotten ahold of.)
So my dad did the good dad thing. He did the responsible thing. He overruled me.
He called our dear friend, the priest. He had been the priest at our church when Jason and I met (we met at church, have I mentioned that?). In walked my dad and the priest, through the sliding NICU doors and over to Natalie’s bassinet. I watched it in slow motion. I remember it in slow motion. I don’t even think I have any pictures of the moment that is forever etched in my mind.
At the time of Natalie’s first surgeries, we had not created a website for our kid, Facebook was not around, and MySpace was a name I called my bedroom. What I am saying is that I did not document my thoughts and feelings at that time, the way that I do now. Not that you would have wanted me to. You see, for the first 3 weeks of Natalie’s life, we lived in our home and visited our baby in the NICU.
We did not know in the beginning that Biliary Atresia would be Natalie’s final diagnosis. She began her stay in the NICU under the UV lights, like any other jaundice case. We’d work on “normal” things, like trying to get her to eat. The first day it was 15 ml every 3 hours, then 20ml, then we finally worked up to a whopping 30 ml. I was encouraged, cheered on even, to keep breastfeeding. And so I did. It gave me a purpose. A sense of control.
And when you can’t control anything, you’ll control that one thing with everything you’ve got.
I took to it like a champ. Strike that. I took to pumping like a champion dairy cow. I focused on finding ways to increase my milk production levels. I found special teas marketed themselves as “Mother’s Milk” tea. My loving husband was my biggest advocate. We’d walk down a long hall, into some section of the hospital that was no longer in use, except for the rare nursing mother pumping session. There was a room with 3 old chairs, a sink, paper towels and soap (for keeping supplies clean) and outlet. Not much more, except for some posters donated by a La Leche League USA. I’d plug my Medela Pump into the wall, take a seat on the old metal chair that was missing chunks of vinyl on the seat, and watch the milk rise in the bottles, feeling victorious as the ounces would climb higher and higher, knowing this was for my girl. The aches I felt, sitting hunched over, were worth it. This was for Natalie. This was making her stronger, this I could do.
After a few days, they did a full blood work-up. Her GGT level was around 1700 (normal is 5 – 55), letting the doctors know that something else was wrong.
They’d take her for an ultrasound. “Inconclusive.” She was born with a gallbladder, after all, and was stumping them.
After this happened 3 times, she had a HIDA scan, and then an open cholangiogram and also a biopsy, all on the day that she turned 2 weeks old.
That’s when our surgeon met with us and drew on a paper towel what we were looking at.
He had opened Natalie up, injected dye, and then tilted the table to watch the flow of the dye. And that’s when he said that he hoped that this wasn’t Biliary Atresia. He and the Pediatric GI attending to us in the NICU, both referred us to a wonderful team of doctors at Children’s Memorial in Chicago. And in the meantime, the biopsy slides were sent to Mayo clinic.
Mayo’s answer came back “Biliary Atresia.” But all other local doctors disagreed. So we got the slides back and took them with us to Children’s Memorial.
When we arrived in Chicago, it was like no place we’d ever been. There were bright colors everywhere. There were multiple waiting rooms with lively fish swimming in tanks. We were escorted to an examination room on the first floor. We thought that we must have been in the wrong place. There were no plaques or diplomas oh the wall. We met two doctors and told them we’d hear the term “breastfeeding jaundice.” The awesome doc, the head of the pediatric gastroenterology at the hospital, gave me a look like I’d just crawled out of a cave. “That is a myth. We’ve disproved it.” OK, I thought. Not going down THAT road with him. I had just had my first lecture by a genius, and I wasn’t a fan of lectures. But it let me know that we were in the right place. They knew their stuff. And above all else, they forbid me to feel guilty.
The fellow (also a doctor, so many levels of hierarchy at the hospital) took the slides and reviewed them. He asked the genius doctor to review them. Their first review said that she may have Cystic Fibrosis. They said it just did not present like “typical biliary atresia.” And so, sweat tests were done = “negative” was the answer. Genetic tests were sent away, and those took 6 weeks to get back. 6 long weeks of desperate waiting. The results came back negative.
After we had left the NICU, we waited for the other shoe to drop. We were still waiting. We waited for the bad news that we knew would come. Every inconclusive answer left me feeling more and more frantic. Genius doctor had told us that for a Kasai Procedure, the procedure to treat Biliary Atresia, to be most successful it must be done by the time the child is 12 weeks old.
The clock kept ticking.
Just a few days later we returned to Children’s and during a follow-up exam, Natalie happened to have a dirty diaper. Genius doctor took one look at it and re-diagnosed her with Biliary Atresia.
Who knew the answer was in the poop?
She was admitted and had another biopsy; it was again inconclusive. The kid is consistent. She then had another cholangiogram, this time a percutaneous type, which was then followed by a Kasai Operation on December 19 of that year. She was 11 weeks old. We’d gotten her surgery in by the time she turned 12 weeks.
Her new surgeon (also a genius), called hers a case of “correctable Biliary Atresia.” We’d learn later that things are not always what they seem and rarely are they as simple sounding as something called “correctable.” But, for the moment, we had an answer.
She got to come home on Christmas Eve.
Little would we know that within a year she would be listed for a liver transplant. I could not have guessed at this point that when she turned 17 months old that I would be giving part of my life to her.
6:15 AM – My boy wakes up. Deep inhale. What will the day be like today for him; for us?
8:00 AM – Exhale. The noise deadline our downstairs neighbor has imposed (“Can’t you find some way to keep him quiet?”) has passed. Now he can play in his room.
8:15 AM – Inhale. He is on the bus for school.
Most of this past month I have gotten multiple calls or emails during the morning hours- “He kicked a student,” “He climbed on the desk,” “Other parents are complaining,” “He hit a teacher,” “I’m trying to understand his disorder,” “We really love your son and want to help him, but we may need to discuss a more restrictive environment.”
If those calls do not come by 12:55, when he is in his afternoon small-group special ed. classroom, I can exhale.
4:30 PM – Inhale. Hoping for a smooth homework, dinner, and bath routine.
If all goes well and no one is screaming by 7:00 PM I’ll exhale.
7:30 PM – Inhale. Just a bit longer now – PJs, brush teeth, read story. Melatonin has made this routine so much easier at night, but does extend the stretch of time between wakeup and noise deadline in the morning.
8:30 PM – He sleeps. Deep exhale. He has probably been corrected many more times than he has been praised. He has told me detailed stories about school, Thomas the Train, the solar system, insects. He has gone to therapy yet has not been able to keep his body still for more than five minutes all day. He has called me “cute little Mommy,” but called a teacher’s aide “a moron.” He has gotten along better with his little sister and lost his first tooth. He has heard and spoken the words, “I love you.”
Reading back on my post, I realize how disturbing it was and that my judgement on that night was wrong.
However i do thank you for the support. This was the first time that i reached to such a low level emotionally and the holiday blues just made it worse for me.
However, it did help so much seeing all my loved ones again during the holiday season because my work is of such nature that it requires me to be away from home for long periods at a time. There are currently no construction / mining projects with open positions close to home and our project has a lot of shift changes according to project scope changes.
Due to that, i have isolated myself for a few years not realizing the emotional damage i caused.
However after my post and reconnecting with my friends at home during the holidays i realized that there is so much beauty in healing too.
When i came back i also started being more social and involved in charity events, small talk to fellow neighbors and joining the church again – which I have not done the past couple of years.
The blog made me realize that it is important to realize your weaknesses and pain to be able to adjust your lifestyle more for improved mental health and to help you heal and use the life experiences you went through to help others in need – even though it might not be directly linked to your own pain.
Since i started healing from my pain, i have grown to be such a better and kinder person and although it has only been just over a month i am exited for my life ahead and it feels full of purpose again.
I still miss her so much, but using the pain to help other people in need has changed the experience from a dead end to a positive life choice – without the requiring of medication or seeing a therapist.
I really thank you for that from the bottom of my heart.
And again i really apologize for my post; it was an emotional breakdown of all the hurt of the divorce and her loss that has just smothered me that night, but i am certain that i will never reached that point again.
I have also posted the following to just say thank you for the responses and prayers although I only read it now it has really helped so much and forever!
i can assist your team on helping other women in similar situations or completely other situations i would love to.
Reaching out has helped a lot and i also reached out to a family member.
I am glad that i pulled myself out mentally and i feel like a different person.
I also started by helping others where i can (e.g registering for bone marrow donation and donating blood ). It gives me another reason to hold on as well as spending more time with my two daughters has also cleared my min. This made me realize it is okay to break down for a minute – but it is not okay to leave them behind without a mother.
This blog has also helped me realize that there is so much people with the same pain and that it is okay to open up and that there is support without judgement.
i thank each and every person that shared their concern and opened up about similar heartache it really does make my burden more bearable.
And another AWESOME update:
As a women in the construction industry and a single mom, I do come across as a very strong and independent women and if my thoughts were shared with my family and friends, I would totally feel ashamed and isolated again, however after sharing my thoughts with you a lot has changed before i even read your posts, but i do feel that your page has saved my life and turned it around completely and here is why…..
I felt a sense of relief that i could open up about my loss for the first time without the judgement of close friends, family, and collages in my personal life so i finally had a go-to safe haven place to deal with my grief. After i wrote my letter, i felt compelled to read other stories on your page (witch made me realize I am not alone with this loss & if they can survive it, I can too).
Then i felt somewhat better and thought hey how can be proactive? have nothing more to lose how about i just check the self help links?
So i did and i realized there is hope. I gathered some tips and gave it a try and I am so amazed by the results.
I don’t only feel better but i actually truly feel like the strong women that i pretended to be for three years.
You may share as much about my letter as you feel comfortable doing as long as i stay completely anonymous, simply for the fact that i would hate to be judged by anyone close to me as i still find myself to be fragile sometimes (not in a suicidal way, more like “i want to eat that whole slab chocolate and cry for a while” kind of way ) but i not ready yet for such a setback.
hence, I have reached out to you.
You are so sincere in your posts and your page is amazing and i believe you have saved my life that night and i can not thank you enough for that.
You gave me a place to go to with all my overwhelmed emotions when i needed it the absolute most.
It was so inspiring that i decided to give back in a way.
I am not a very good writer but I thought hey everyone struggling is in need of something so i started donating blood and registering at SABMR to give back as my general health is at a stronger stage than my writing.
