It Was a Monday

I am not sleeping, so I will write.  Tonight (which is now yesterday) at dinner, Liam asked, “Do you know what today is?” and Jim and I looked at each other, just briefly, before I asked Liam to tell us what today is.  “It is the last Saturday of the year, and the last day of the last full week of the year,” said my son who will turn eleven exactly four months to this last Saturday of the year.

When Liam said this, I glanced at the Melissa & Doug calendar on our wall.  Liam resets it every month, when I forget, shifting the magnets to form a new configuration of dates and holidays.  As I sat in the same seat at the same table where I’ve eaten many meals  in this house for over nine years, I saw that December 30th is on a Monday this year. It was just a glance, but in the time it took to turn my head back to my salad, I heard the excited echo of my own voice across a decade plus one year, saying, “We find out on Monday.”

On Monday, December 30, 2002, we were to find out the gender of our baby.  That was all, just the gender. Boy or girl was all we were supposed to know at the end of that day.  I couldn’t sleep tonight  because I wanted to believe I was mistaken, that I hadn’t said those words, that it was really a Tuesday or a Thursday.  Yet, calendars don’t lie, and the 2002 calendar tells me December 30, 2002 was indeed a Monday.  Thanks to Leap Year, this is the first time December 30 has fallen on a Monday in eleven years.  I am perplexed by the power of dates and how we recognize them in-spite of ourselves.

It was a Monday when we ate from the tree of knowledge and tasted the most bitter of fruits.  It was a Monday that we were cast from the garden of expectations to leave all our friends behind to enjoy their normal lives of soccer games and college funds. We embarked on our exile from where we believed we belonged that Monday; it was an ending and also a beginning.

We made new friends.  We made a beautiful but hard-fought  life outside that garden of what might have been.  I made a difference in our new world; I know this is true. I know that I’ve made the most of our exile and our new home in the Heartland, where we now have lived longer than we lived in the lost refuge of Shangri-La.  I know our life is good, and I have done good things.  But it was a Monday when I lost every scrap of my innocence and was introduced to the unique despair that haunts mothers who bring children into this world who begin to die the moment they first draw breath and whose last safe place was in their mother’s womb.  I am of the breed of mothers who have no right or reason to expect their child to outlive them, and this was a revelation made on a Monday when I expected only happy news.

I want to believe the haunting thoughts I’ve fought all week manifested from the act of putting away the Christmas ornaments. Maybe it stemmed from my horribly timed effort of cleaning up my basement full of memories and treasures from Liam’s infancy and handling paper photographs I’ve not seen in a decade that show my just how horribly sick my child was without the distance of a computer screen.  Paper in my hand brings the details so much closer to my eyes and my heart.  Then there is the imbalance between the children’s memory boxes; Moira’s are fewer and less full because Liam’s contain dozens of get-well cards, but not a single congratulations card. Perhaps it is the absence of birth announcements and the presence of countless tiny hospital admission bands that jarred me from the peace we earned through so much blood and risk.

Then I believed it was the arrival of a new dog on the same couch where I lay and mourned the motherhood I expected to have that reminded me of the dogs who attended that mourning. Perhaps, it was even watching the Two Towers, and when King Théoden said, “No parent should have to bury their child,” asking Jim when the movie came out – 2002.  Of course, I watched that film at exactly the wrong time then and now.  Most likely  it was all these things and the fact that Monday is coming regardless. I cannot change what was, and I cannot know what will be.  No matter how much I’ve changed myself or changed the world, I cannot escape Monday or my exile from my former self that began that day, almost eleven years ago.

Ultimately, when all things are weighed in the balance of our four lives, we are richer and stronger than we were before. Yet to find that strength, we had to lose so much.  The price was steep and so was the climb.  I know what might have been was merely an illusion and that Liam’s heart was malformed many months before its fatal flaws were revealed to us with the knowledge we would fight for his survival.  I know all the rational thoughts, all the hopeful thoughts, all that I can do and have done because I spend 364 days of the year immersed in the pragmatic efforts of doing everything possible to sustain him and children like him. No, I need not be reminded  about where I live now because  I know the topology of my life so very well. And yet, I am so surprised to trip over Monday, as if I could have forgotten, as if my mother’s heart and my long empty womb would ever let me forget the day that everything changed, most of all me.

For the lovely families who follow my blog and have their own “Monday” to share, I warmly invite you to share it in the comments below.  You are brave and you are home, even though this is no place anyone would choose to live.


10 thoughts on “It Was a Monday

  1. Our Monday was a Wednesday – Wednesday, May 15, 2002. Madalyn was born 9 days earlier on Monday, May 6. Despite numerous ultrasounds during pregnancy, her heart defect went undetected.

    But that Wednesday, I knew something was wrong. I called our family doctor, she told me to take her to the hospital. I remember taking her upstairs to get her dressed while I waited for my husband to come home. I dressed her in a little pink outfit and cradled her to my chest and whispered to her as I was carrying her down the stairs, “Don’t do this to me baby girl. Your mama can’t take this.” I knew then something was horribly wrong – I just didn’t know what.

    I remember standing by the little baby warmer in the ER as doctors and nurses ran everywhere trying to stabilize our precious little “healthy” daughter we had just taken home from the hospital a little over a week before. I stood there and thought, “From this point on, whatever happens, our lives will never be the same.”

    I have never been more right. Our lives were forever changed when I looked at the ER doctor and said, “What is wrong with her.” She looked at me with sympathy in her eyes and simply said, “We think it is her heart.”

    Our lives from that point have been filled with fear, sadness and incredible celebrations. We are among the incredibly blessed – those that have survived to take another step on this journey. But you are right, there are some dates that have the power to just take us back to remember that even in the relative calmness we live in now, there was a time that we lived with the chaos, the agony and uncertainty that marked their early lives.

  2. Mine is a combo of March 14 and 15. Mainly the 15th because that was the echo date and meeting with the cardiologist but I knew going to bed in the hospital the night of March 14 that there was a heart problem I just didn’t know how bad. Ironically on March 14 that morning before anything happened I had it marked on my calendar to call my grieving friend who was spreading the ashes of her baby daughter on her original due date who was born stillborn in January. Needless to say we were sent to the emergency room for low oxygen from a doctors appointment and I was so sad when my friend called me first to tell me how it went and at the time I felt like I hadn’t been there for her but of course I’d been occupied with doctors trying to figure out what happened. It was the next morning the echo occurred. IRONICALLY when I got pregnant (currently pregnant) this time and I was tracking my cycles and I found out ow as pregnant and I calculated the date in one of those online calendars. MARCH 15. It took a couple hours to sink in and I was deciding if I would lie to the doctors about my last period or even ovulation since I was tracking it. Even more ironic is this second baby has mild heart abnormalities we have confirmed. To this day when people ask me when I’m due I say middle of March because something makes me not want to say the date. I can say it but it feels weird to me all the way around. I know the baby most likely won’t be born on that date but now I’m going to always remember these three events on Marxh 15 (14).

  3. Oddly enough, mine was a Monday as well, July 27th 2009. We knew something was not quite right, our pediatrician found a murmur at a prep appointment for a hip surgery. We were almost out of her office the week prior, with a “many kids have a slight murmur when not feeling well” when the ped doctor ran after us, said something didn’t feel just right even though she was the one that said all clear for surgery, and handed me a card with July 27, 2009 written on it. We had our cardiologist appointment that day.
    We were so sure that there was nothing seriously wrong with her heart, because she was already plagued with developmental dysplasia of the hips, both of them. She was undergoing her third and fourth hip surgeries in the next six months, she can’t possibly have a heart issue too!
    We did so well through the EKG and echo, we asked the tech if dad needed to stay for the talk with the doctor, because dad was also scheduled for an MRI later the same day for his knee. I know the tech can’t really tell you anything, but we were so relieved when she said no, nothing big, dad can go.
    Little did I know that just 30 minutes later I would be hearing words like idiopathic hypertrophic sub aortic stenosis, atrial septal defect, hypertrophic cardiomyopathy, open heart surgery, pressures above 30, let’s wait and see.
    I never imagined leaving there with a rough skeptch of a heart drawn on the paper on the exam table, showing what we were dealing with and word scribbled on so I knew what “we” had… I took the paper because I knew that I only heard a quarter of what the cardio was telling me.
    I somehow pulled myself together, grabbed my. 2 year old and managed through the fog to the car, we started on our way home, but I had to park the car, in the park and ride, and sob. I called my mom, no answer, I called her dad, no answer. I finally called my sister and tried to explain what I was just told, how this would affect her upcoming hip surgeries, how this was changing our life…
    I was about 3 months pregnant at the time, I tried to keep it together, I tried to be strong for my big girl, her little sister, and the baby growing.
    I will never forget that day, or September 13, 2010 when after passing out we found she needed surgery soon, or October 14, 2010 the day of her open heart… There are many other days in there… Jan 30, 2008 her first hip surgery, march 29, 2008 her second hip surgery, August 2010 her third, and February 10, 2011 her fourth and final.
    These dates though are also punctuated with the happiest times, a birth on 10/21/08, 1/1/11, 4/2/12… Her first day of school, first time at Girl Scout camp, her first dance performance on stage… The first time walking (three times over), sitting up (before and after each surgery, again, a milestone we hot three times), being able to eat solid food, because she finally was out of her body cast.
    Sure, I hurt on that day, it brings back memories, but there are so many things that I still have to be thankful for that those memories can only hold onto me for that one day…

  4. Our Monday was in nov 2012. The funny thing about our “Monday” is I can’t remember the exact day and for whatever reason I’m fine with that. But on our day I was going to show our other 2 little girls that mommy really had a baby in her tummy! I was so excited yet feeling unsure. In the back of my mind I knew something wasn’t right I just didn’t know what. Well, after an incredibly long wait the four if us found out that our little baby had a TGA heart defect. Well, their loses being a strong mama. I lost it and started sobbing. I know I scared them. I really wish I could redo that morning. They would have been at school instead of foolishly bringing them along! But for the rest of our heart journey I have sucked up my emotions and pulled it together for only the girls and my sanity, oh yes and my husband ❤

  5. Mine was a Wednesday!  My water broke at a family reunion 7 weeks before my due date of 10-25-01. An old relative I never met before told me every time she saw me that day,that I was going to have the baby “today”…I kept reassuring her that my baby was not due for 7 weeks! 

     I was having a perfectly normal pregnancy with an ultrasound every month because I iwas older!  3D ultrasounds were just on the market & my Dr had one…I knew what my beautiful little girl would look like before she was born!!…what I did not know, was that she would have 3 open heart surgeries before she was 6 years old & that the first 3 years of her life would be plagued with visits to cardiologists, neurologists, gastroenterologists & hospitals for invasive testing.

    She was born on Tuesday , September 18, 2001…1 week after 9/11….every headline & TV channel had stories & images of heartbreaking loss & destruction & I was bringing a child into a world that would never be the same. 

     I had one glorious day of being the mom to 2 perfectly healthy daughters! (Our firstborn daughter was 2 years old.) She had perfect Apgar scores & other than the fact that she was underweight (4lbs 15oz)…she was perfectly fine!!  All that changed on Wednesday…..a nurse mentioned she might have heard a murmur & asked the cardiologist on rounds to come have a look at her!   I was alone… My husband went to work & my mom left the night before for surgery she had scheduled months ago, thinking she had plenty of time to recover before my original due date!  

    I met the cardiologist in the hallway & he asked who was with me….& how long would it take for my husband to get back to the hospital?….(too long)…and  right there in that little hospital room with a kind motherly nurse holding my hand, my education of my daughters heart began.  That night, we signed transfer papers & watched them strap our tiny beautiful daughter into a gurney & wheel her out …and our journey began.

  6. My Monday was a Tuesday the week of Thanksgiving 2011. My beautiful son had been born the night before at 8:32 p.m. It had been a hard delivery as I had tried for a V-BAC, only to have my uterus rupture after 11 hours of labor and both of us come to the brink of death before he had even taken his first breath. Luckily I had an amazing doctor who saw the signs and immediately performed an emergency c-section. And then there was my Keegan. With the most beautiful white hair and red lips. That night I held him all night. I thought that all the trouble was over and the scary part was done, and I was so in love with him I didnt even care that this meant there would be no more children for me. I had worried at the beginning of my pregnancy, because I didn’t know how I could possibly love someone as much as I did his older sister. She was still so small and he was a surprise. Best surprise of my life. The night he was born our regular pediatrician was not on call so he saw his partner. There were no surprises and I believed that I had given birth to a perfectly healthy little boy. The next morning our regular doctor came in and told me that he heard a little mummer and was going to do an EKG and send it to a pediatric cardiologist in Dallas (our closest large city) he said it would probably be a few days or even a week before we heard anything since it was a holiday week. I listened to him and was not concerned a bit, I have a niece who has a heart murmur that closed on its own. I was so unconcerned that I forgot to mention it to my husband when he got back to the room a couple of hours later. That is until the doctor walked in with a nurse following behind him. This pediatrician was my doctor when I was a child and my siblings so for him to walk in with the look that he had on his face and to bring a nurse with him I knew something was wrong.
    He looked at me and said “I heard back from the cardiologist.” My response was simply “Already?” “Yes, already” he said ” your son has what is called tetralogy of fallot and he is going to need to have open heart surgery to repair it.” At this point I collapsed my head onto my sisters shoulder and cried while he drew on a white board a picture of a healthy heart and one with ToF. I couldn’t concentrate on his words anymore and was an udder mess. He told us that the cardiologist wanted to see us the next day, to get ready to make the 3 hour trip straight from the hospital. And so began our time as a heart family.

  7. Ours was a Thursday, the day after our boy was born. His heart defect was found during his circumcision when he turned blue. It started as a severe murmur, then a large VSD, then a coarctation. Then after arriving to the bigger and more specialized Children’s Hospital 45 minutes away, we learned he had full blown Shone’s Complex and would require the Norwood and two more surgeries after that. We call that day, “The Day of Blows” because it just felt like they kept coming, killing us again with each new swing. I remember thinking and saying out loud, that I had a very clear worst day of my life… that Thursday was it. But I was wrong. There was a Monday night, then a Tuesday. Then some time later another Tuesday. The dates all slip my mind, but the days of the week are so clear… I wonder why? I don’t have a clear worst day anymore, but that first Thursday, the Day of Blows, is for sure my exit from that life before… as you so beautifully described it above. We left our old life and started our new life… one that I am so thankful and blessed to have, but a hard one at that.

  8. Our Monday was a Friday. Friday 10th September 2010. My daughter was 11 weeks old. I had delivered her in the city, and when we had the all clear from a paediatrician at two weeks old, we flew 1500kms to our home town, a remote mining town in Western Australia. During those 9 weeks, I had taken her to the local GP and child health nurse several times, worried about her colour, only to be told she was “cold” and to rug her up more. finally, on the Thursday a different GP saw her and asked if I was still concerned. I didn’t know anymore. So she suggested we fly down to the kids hospital and present her referral letter at ED. So, we left my husband and son on the Friday (expecting to be home after the weekend – we never went back) and boarded a qantas flight. She slept all the way… My folks picked us up and we drove straight to the kids hospital. I was sitting there expecting to have to wait all day to be seen. There were three people in front of us, and one by one were seen at triage and sent over to another area to wait. We are called up to the front. Hi, I say, we flew here this morning, I have this referral for my daughter. She looks at it briefly and then at my daughter. This way please, she said. Indicating the door into ED. As we enter she actually grabs a passing nurse, celeste was her name, and they have a heated exchange. Celeste is busy with another patient, but the triage nurse is insistent that she see us straight away. Still feeling awkward from witnessing their exchange, Celeste leads us over to a bed. I put my daughter down and Celeste puts a pulse ox on her. 54%. Then there’s oxygen being put on, monitors being dragged over, I’m still wondering if 54% is good or bad and all of a sudden there’s 10 doctors and nurses standing around the bed. I glance over at my Mum, across all this bustling, my brain not quite catching on yet, our eyes met and I saw that she knew and that moment I knew. This is really fucking bad. A full day of tests revealed tricuspid and pulmonary atresia, restrictive asd, very small vsd, hypoplastic right ventricle, PDA (blessed PDA, which stayed open for 11 weeks and 2x commercial flights). I vividly recall later that day her cardiologist drawing over a picture of a normal heart, explaining what she had and wondering how on earth she was alive. She had a cath on the Monday, to open her asd which worked briefly and then didn’t, and a central shunt and atrial septectomy on the Wednesday.

    Another op down, and she is now awaiting the Fontan. We are booked in for Tuesday 9th September after being cancelled twice due to illness. It will be one day shy of four years since That Friday. I hope it’s not postponed a day, but at this stage I’d take it anyway. We’ve been waiting since February and it’s been truly horrendous.

  9. Mine was a Thursday 10 years ago. A scheduled c-section that went as planned.
    I got to spend some time with her and I tried to nurse but she wouldn’t. I was told that it would happen just to be patient. As this being my second child It just didn’t seem right. I felt something was off. But I was ts she was healthy and fine. It was back at a time when they took the babies to the nurseries at night instead of keeping them with you. I kissed her goodnight and they took her to the nursery. Little did I know that that would be the last kiss for several weeks. In the morning I called for her and they sent a doctor in to let me know that they had sent her to the NICU bc of her heart. I felt my world stop. I couldn’t breathe. He then went on to explain that it was still early but her heart condition was undetectable in the womb. He just kept talking and explaining but I was lost in my own thoughts and fears. I was snapped back into reality by hearing my name being repeatedly called and asked to sign all these consent forms. I looked at my husband with tears filled in my eyes and lost it. I couldn’t hold her, touch her, nothing. Only talk to her in the incubater bed. I prayed and prayed for a miracle only to be pulled aside a week later and ts by her cardiologist to start making funeral arrangements. I finally broke. Right then and their in that room and sobbed. They asked my husband if they could give me something to calm me speaking as if I couldn’t hear them. It was in that moment I found strength. I stood up and told the cardiologist that he was wrong that she wasn’t going to die. He gave me that look of pity that I will never forget. As if I was in denial. I gathered myself and called my uncle who was a pastor and td him to come and pray. When we walked into the NICU the nurses gave me that look and hugged me and said they were sorry and I could have all the time I needed by her bedside. There we stood my husband, my uncle,& my in laws around her incubator and prayed. At this point we still weren’t allowed to touch her but my u for reached in and anointed her with oil and put a healing cloth in the Blakey that was under her head. As woman who had been blaming herself and God for this I knew that I had to believe. I couldn’t lose her. How would I tell my son that his sister wasn’t coming home?
    In that moment I felt peace. We had to leave for the night( the hospital had crazy rules)and when we got home I heard my husbands muffled tears in the other room.
    We didn’t speak much that night but at 2am I was awakened and needed to call the NICU for an update. My husband gave me that same look as the nurses and handed me the phone. It was the most beautiful moment; the nurse said that the doctors were not sure as to what happenend but my baby girl had turned the corner and they were decreasing the amount of oxygen bc she was starting to breathe more on her own. Her coloring was no longer pale but it was turning pink. They reminded me not to get my hopes up but I knew! I screamed with joy and watched the clock until I could see her. When I went in to see her the good news kept flowing and each day got better. After 2 weeks I was able to bring her home. She is now almost 11 and has been doing great!
    She has Epstein anomaly but on the mild side of the spectrum. We have had our scares and she is limited to her level of physical activity and takes medicine twice a day. She is our miracle baby! I have never openly shared our story like this but after reading everyone’s stories I felt as if I wasn’t alone. Thank you for having this blog and for sharing yourself with us!

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