“It’s comin’ on Christmas, they’re cuttin’ down trees, they’re puttin’ up reindeer and singing songs of joy and peace. Oh, I wish I had a river, I could skate away on.”~Joni Mitchell
If you are a new parent of a child with special needs, you may be surprised to find that your experience of the holidays is not at all what you had imagined when you daydreamed about becoming a parent. If you have other children, you may find yourself in the midst of an internal struggle as you attempt to keep things normal and exciting for your neuro-typical children while fighting the emotions of sadness and anger as you realize that your child with special needs may not grasp the joy and magic of the holiday season.
Having both been raised in Christian homes, we traditionally celebrated Christmas each year. But in December of 2003, with the anticipation of our first child’s arrival, we made a decision to forego decorations, a Christmas tree and gifts. We knew we would be more than overwhelmed as new parents and besides what better gift could one ask for then a fresh, new baby! We planned to spend the holidays with our families in their homes or we were content to just be in our own home if getting out proved too difficult in those early weeks postpartum.
This decision ended up being a wise one when we found ourselves in the children’s hospital on the night of her birth (Dec. 5th) and for the ten weeks that followed. Christmas eve was spent at my husband’s sister’s home because it was in close proximity to the hospital and we wanted to be with our girl first thing Christmas morning. I recall dinner and gifts and the ever present heaviness of grief, fatigue and shock that blanketed everything. I remember going upstairs to pump every three hours wearing the flannel nightgown my mom had made for me complete with slits for breastfeeding which would never be used for their intended purpose. Santa paid the tired, weary parents and babes a visit in the NICU and the nurses did their best to be festive for those of us who sat shocked in the children’s hospital.
To say that every Christmas since then has been a bit of an act would be an understatement. Christmas has never, ever been the same for us and in fact some years have been truly heartbreaking. This year, the 11th Christmas since her birth, things feel different and I feel qualified at this point to share some of my own tips for surviving the holidays when you face unexpected circumstances whether that be the birth of a child with medical fragility, a death in your family or any other number of curve balls that potentially could be thrown your way in a lifetime.
1) Expect The Holidays To Be A Challenge. Most likely, they will be challenging especially the first few. The holidays are a time of happiness and when things have gone completely opposite of what you had anticipated, it is highly probable that you will not be feeling warm and fuzzy with joy and gratitude. In fact you might be downright angry and depressed. This is perfectly okay. This then can make it very challenging to be around others who are oblivious to the deep sadness you may be experiencing. Be gentle with yourself and know that surrendering to all of your emotions is the best gift you can give to yourself. Grief needs to move through you. Halting it by denying your true feelings will simply prolong the process. Express this to your family members especially if getting together some years is just too hard to manage.
2) Make Necessary Adjustments. You may have dreamed about what Christmas would be like with your child. I know that we weren’t into Christmas so much as adults but knew that when we added a child to the mix, we would experience Christmas all over again through the eyes of our child. Realizing that this would never happen, was very heartbreaking. We are not religious and so the whole Christmas celebration felt unnecessary to us. Every year I would put up a tree and decorate it and go through the motions of Christmas until one year, I recognized that it didn’t matter to Tim or Meredith and I was just making more work for myself. So, I stopped and enjoyed a simpler Christmas in our house while enjoying the more elaborate festivities at our family’s homes.
3) Skip It Altogether. If it proves to be just too overwhelming, there is always the option of skipping it altogether. The wonderful thing about holidays is that they come around every year. If one year, you are stuck in the hospital or too grief stricken to contemplate the enormous task of “getting ready” for the holidays, then just make the decision to let it go for a year. Maybe plan to attend mass or a church service that you normally would do and have a meal with family. Other than that, take the pressure off yourself knowing that you will be in a different place in a year. By 2011, it was clear that the main focus of our annual celebrations was Meredith’s birthday. Since it landed in early December, this day meant far more to us than any other day of the year. We looked forward to her party and got ready for it the way most people got ready for Christmas. By the time we recovered from that, Christmas would be just days away. Eventually, we figured there wasn’t much sense in hauling up the decorations from the basement and putting the effort into transforming our home into Christmas. We both eagerly anticipated the 26th of December when it was all over. We got to a place where we made a decision to skip the present buying, the evergreen, the decorations and completely simplify. We started sponsoring one family in our community; putting what little funds we had into giving Christmas to a less fortunate family. We also opted out of gift buying for each other and family.
4) Create New Traditions. As each year passed we increasingly lost our spark to try to make the holidays bright. In 2012, in an attempt to soothe the annual dread of Christmas, we focussed our attention on the Winter Solstice instead. I was studying to be a Life Cycle Celebrant and was developing a heightened awareness of ritual and symbolism. I created a winter solstice ceremony and planned a special dinner with my immediate family. We talked about our darkest moments in the last year and what our hopes were for the coming year. We lit candles and read pieces of writing that described the Light and Darkness of this time of year. We were certain that Christmas would be different but we found ourselves sitting in our living room Christmas morning in tears. Creating some new traditions soothed the sting yet we still found ourselves sharply aware of what we were missing Christmas morning in our home.
5) Be Honest With Yourself and Others. More than anything, I think it is imperative that you honour your feelings and that family members and friends meet you where you are. It is so painful for our family members and friends to see us hurting and grieving. Acknowledging our struggles and accommodating our needs where possible, is a gift in and of itself to the family who is feeling less than jolly. If family members do not understand the challenges in travelling over the holidays, they may need to be informed. This year, we had to come to the realization that travelling with Meredith to attend family get-togethers requires herculean effort and is no longer do-able. We welcome family to come to our home but have also had to accept the fact that if events take place elsewhere that we may not be able to attend. That is our reality.
6) Trust That It Won’t Always Be This Hard. I assumed after ten tough Christmas’ that it would always be this way and much to my surprise, this year feels different. I have actually had fleeting moments in the last few weeks where I have felt that Christmas “feeling” that I used to have as a child and young adult. For us, Christmas is about children and reliving it all through the experiences of your children. Facebook was a blatant reminder of all that we were missing out on: trips to see Santa, Christmas cookie baking and craft making, wish lists and gift buying, tree decorating and of course, can’t leave out the Elf on the Shelf. In the past, reading these statuses felt like I was being gutted day in and day out. But somehow, some way, things have transformed over the past year. My heart has softened with the acceptance that we will never have Christmas with our child like we had always imagined. It will always be a tough reality but with time and the ability to allow my emotions to guide the process, it has become easier.
This year, we have a non-traditional tree and there are a few gifts under it for Meredith. We will get together with family on the 26th and 27th and will have brunch with my sister and her young family (four children) on Christmas Day. We will have joy knowing that two children in our community will wake up to gifts from Santa that they had asked for. We have even started to think that maybe next year we can try to have a “normal” Christmas again.
Over the years, I have learned that this is a process. There is no right or wrong way to do it although I do believe that listening to your own heart and letting it guide you is the only way to heal it. I think that had we forced Christmas each year and faked our way through it that we would not have evolved and made some sort of peace with the way the holidays are experienced now. May you all, somehow, find your way through the coming days and welcome a new year filled with good health, happiness and love for that is all that really matters afterall.
pil·grim·age (p l gr -m j). n. 1. A journey to a sacred place or shrine. 2. A long journey or search, especially one of exalted purpose or moral significance.
If you are just joining me, check out Part 1 of this post before reading on.
For the last several years, I have offered a workshop in my community for women who have experienced a difficult or traumatic birth. I, personally, have never really felt that my actual labour or birth were traumatic. The unexpected emergency that occurred immediately after the birth certainly was and moreso for my husband than myself as I was basking in the endorphin-drenched euphoria that typically follows a natural birth. I was worried and concerned, of course, but at that point we were under the impression that Meredith would be in need of observation but that she would be back home in no time. My husband, on the other hand, accompanied her in the ambulance and eventually to the children’s hospital and witnessed things that night that he has rarely spoken of.
With the intensity of those first few hours and days and the continued intensity of the weeks, months and then years that followed, I never gave much thought to our labour and birth and very rarely spoke about it. I didn’t feel a need to and our life circumstances were so vast and all encompassing that the impact of the birth was miniscule if anything. And so this inner urging to return to Meredith’s birthplace was a little puzzling to me as it seemed to come out of nowhere and returning there in this capacity had never been on my radar.
I was curious as to what would unfold on this “pilgrimage.” I have never been one to ignore my intuition no matter how obscure it seems at the time. Even though I didn’t think I needed to go back in to our first home, I respectfully listened to my gut and trusted that whatever came about as a result was exactly what was needed at this time in my life.
My husband was not interested in taking this road trip with me and I was content to go alone. My brother ended up coming to visit from Toronto the same weekend and so he came along for the ride. I purposely wore the turquoise beaded necklace that I wore through my pregnancy and labour and in the early months postpartum~ a gift from my husband in mid-pregnancy for doing such a good job growing our baby. I brought Meredith’s first life album which documents our pregnancy from the beginning right through to the time she went in for her g-tube surgery (around 6 weeks postpartum). I also packed a journal just in case I was inspired to write.
We arrived at 9am sharp and entered the enclosed porch. After several knocks, it became clear that no one was home How could that be? We waited and pondered and then my brother walked around to the front of the house and discovered a note on another door. The note explained that they had been called out that morning unexpectedly but had left the door unlocked and encouraged me to have a walk-through as planned.
After placing my hand on the door knob, the feeling of opening the door was so familiar. I was stunned to walk into the kitchen to find that it had been completely renovated. There were french doors where the kitchen sink and cupboards had once been and the place where our fridge was now housed a stove and counter space. The tile floors were gone, replaced by the original pine boards that could be found throughout the entire house. It was completely unrecognizable from the kitchen that we had left behind just under ten years earlier.
I proceeded to walk into an open space that was once a dining room adjoined to another larger room which we used as an office. Meredith had slept in the office for those first few weeks at home as someone needed to be awake keeping constant vigil in those early, fragile days. The new owners had pulled back the red shag carpet in the office space exposing the amazing, original pine flooring. The stark, white walls of the living room and dining area had been painted rich greys and warm paprika colours.
I made my way to the staircase~ an old, weathered, natural wood staircase. The hand railing that Tim installed for safety reasons as my pregnancy progressed was still there just as we had left it. I smiled remembering how caring and thoughtful he was as I grew our girl. I got to the top of the stairs and peaked into the bathroom. This was where I spent most of my labour and countless nights pumping while Meredith was in the hospital. The bathroom had been updated with the removal of cedar overload and the addition of a modern toilet and flooring and a fresh coat of paint. I sat on the toilet and looked towards the small, lone window. I had stared out that window for hours as I rode out each contraction. Instead of feeling sad or anxious, I smiled remembering the hard work that took place in that room on that day ten years ago. Seeing the unchanged soaker tub and vanity was like I had stepped into a pocket of my past.
Meredith’s little room, across the hall from the master bedroom, was now an exercise room for the present dwellers. I checked out the laundry room beside the bathroom and sure enough the washer and dryer we had just purchased but sold with the house were still there looking worn and outdated.
Finally, I entered the master bedroom where Meredith was actually born. The placement of the their queen size bed was exactly over the spot where Meredith was born. I wasn’t about to re-arrange the furniture so I stood between the bed and the mirrored closet doors and closed my eyes for a moment. It was only then that I felt the tears surface. My brother had respectfully remained on the main floor as I walked through the upstairs but at this time, I called him to join me. I showed him all of the rooms and described what they had been like when we were the homeowners. I showed him where Meredith was born that night a decade earlier.
And then I was ready to go. I left a bottle of wine and a card for the owners and we left to enjoy breakfast at one of the cafes Tim and I spent a lot of time at when we residents of this town.
You could assume that this pilgrimage was a bit of a letdown; anticlimactic to some degree. There were no fireworks, no grand revelations, no meltdowns or breakdowns and no residual feelings after walking through this sacred space. I felt calm and peaceful as I made my way through each room.
Perhaps I expected it to look the same to some degree. I realized that, like the house, I had also undergone ‘renovations’ and changes over the years. The shocked and shattered mother I had been eventually evolved into the confident, joy-filled, warrior mother I am today……kind of like that red shag carpet being lifted to expose the authentic, gorgeous pine floors.
Going back there did not bring me peace about my birth. I discovered that I already was at peace. I needed to go back there to really understand how far I had come in ten years. The timing was right for me to make this pilgrimage into the past in order to discover that not only was everything okay in my past, everything was also okay in my present.
A few weeks ago, during a nurse-less night, I was attempting to drift off to sleep when I was overcome by an urge to return to Meredith’s birth place. The thought of returning there, brought tears to my eyes and I am not even sure what triggered this deep desire. The urge was demanding and felt somewhat urgent as her 10th birthday approached. So I wrote a letter to the present home owners asking them if they would be so kind as to allow me to return to the home that I left 9 1/2 years earlier as a broken and shattered new mother.
Weeks past and not a word was received from them. I assumed they were not interested in fulfilling my request and so I decided it was not meant to be. Then, three days ago, I received an email stating that I was more than welcome to come to their home for a walk through. An out-of-town business trip and ill health had prevented them from responding earlier. I was both relieved and hesitant as I wasn’t sure what memories might surface if I walked back into the home where our lives changed so drastically.
We moved into this first home in February of 2003 and by the end of March I learned I was pregnant. It was about to become a year of big changes and transitions and we began to prepare for the early December arrival of our first child. I was practicing as a Doula at the time and continued to work until my seventh month of pregnancy. We made a decision early on that if my pregnancy was healthy and all was well with myself and the baby, then we would plan a homebirth. We were in the care of skilled midwives and felt very comfortable with our decision.
My due date came and went and finally by the night of December 4th, I was experiencing contractions. By morning they were in full swing and when our midwife arrived at 9:30am, I was 4cm dilated. The labour progressed well and by 5pm, I was pushing. But things took a sharp turn for the worst when at the time of birth at 7:23pm, meconium appeared and Meredith aspirated. Within minutes of her birth, a paramedic entered our bedroom and scooped up our baby and rushed her outside to a waiting ambulance. She was airlifted to the children’s hospital later that night and when she was 5 days old, we learned that she had experienced hypoxia resulting in a significant brain injury.
It amazed me that people were quick to point out that perhaps if she had been born in the hospital, things would have turned out differently. One family member declared that after some ‘research’ she learned that the life-saving equipment midwives use differs from the equipment used in the hospital and so if we had not had a homebirth and had instead gone with an OB, we likely would have had a different outcome. The feeding tube nurse at the children’s hospital shook her head sympathetically and announced that “It was such a shame….to think what could have been if she had just been born in the hospital.” These sentiments were shared regularly and I will always be grateful for my previous experience and knowledge or I might have otherwise absorbed these words as TRUTH. But, I didn’t feel a need to be defensive as I knew that our decisions were made in the best interest of our baby and that ignorance can sometimes overshadow people’s sensitivity and tact. I mean, even if having a hospital birth would have made a difference, how was it even remotely helpful to point this out to a new postpartum mother?
It would make sense then, that we would want to flee from our home as quickly as possible as it would obviously be a blatant reminder of our poor decision making (enter sarcasm) and our terrible outcome. I am not one to back down from the truth and I, too, needed to know for sure if having a homebirth caused this to happen. In the end, after much heart wrenching soul searching and information gathering, we knew that there was nothing that could have been done differently to prevent the outcome. I am certain that many still shake their heads assuming otherwise. I cannot help them with that.
After we brought Meredith home ten weeks after her birth, the house had a different feel to it. Grief and shock hung like heavy drapery over every corner of it. It was clear that I would not be returning to work for a long while and this reduction in income coupled with a lack of family support forced us to make a decision to sell the house and move closer to our families. It sold in three days and on the last day of packing, my mom and I (who was present at the birth) sat in that sacred space where Meredith was born, held hands and released tears of what could have been. Eight months after her birth, we were leaving our forever home.
To be continued………………
Today, Meredith has reached a milestone birthday. She celebrates ten years of LIFE and we celebrate right along with her. It seems to have been fleeting, that it cannot be possible that there have been 3,652 sun rises and sun sets since the day she was born. And then as we travel back in time, our time capsule being folders and folders of photos taken over the years, I recognize how much we have all changed and evolved since December 5th 2003 when Meredith was born literally fighting for her life and we, in a sense, were fighting for ours.
The years have weathered us all and we have experienced more in this last decade than we ever could have imagined and we have triumphed in ways that ten years ago we would have never thought possible. Parenting Meredith has been nothing short of miraculous and extraordinary and not in the ways that onlookers might think.
We never fathomed the intensity of all that is involved in caring for a child like ours day in and day out, long term and we believed back then that there was a good chance we wouldn’t have the ability to do it. This was quickly followed by the realization that we didn’t have a choice in the matter and so we made a commitment to do everything in our power to give this child the best life possible.
As time went one, we began to care less and less about whether or not she would reach milestones. We accepted that a miracle was likely not going to happen and Meredith’s significant brain injury would have a life long impact. No amount of prayer, Mount St. Patrick holy water, shamans, healers, energy workers, therapists, doctors, specialists or therapy was going to change that bitter reality.
But miracles did abound just not in the limited way we had defined them. Celebrating a decade of Meredith’s life and moving into the double digits, is nothing short of miraculous.
I learned a long time ago that there are no guarantees in this life and that life will change in the time in takes to inhale a breath of fresh air. The challenge, perhaps, is welcoming ALL of life’s experiences, great and small, as opportunities to grow and expand and become a person that you had never imagined becoming. Certainly, life can swallow you up and I do believe that some of us do get far more than we can handle. I have seen too much to believe otherwise. But I do know that we can choose to take up the challenge with grace and humility and we can trust that we can thrive in the midst of it all.
I have no idea what lies ahead. Sometimes I feel we are on borrowed time and that as each day and year passes, we get closer to a time when we will no longer have Meredith earthside. And at the same time, I find myself entertaining the possibility that she will be here for a very long time teaching us all that we need to learn to be the people we were intended to be.
In celebration of ten years, I want to share the toast I made to Meredith at her birthday celebration on Sunday:
My Dear Meredith;
It is incredible to me that we are celebrating your 10th birthday! How can it be that a decade, that three-thousand-six-hundred-and-fifty-two days have passed since that moment you came into this world on a snowy, December eve?
I want you to know, my love, that I am so grateful that you were born to us. Selfishly, your birth and your presence in my life, changed me in ways that I firmly believe could have never been possible had you not been born. It hasn’t been an easy road, baby, but mothering you has been worth every challenge and every difficult moment. If I could change one thing, it wouldn’t be you but instead I would change having to stand by helplessly as you face your struggles day in and day out.
I will never forget the panic we experienced when we heard the news five days after your birth that this path of parenting was going to be significantly different than the one we had imagined. Now ten years later, I wish I could go back to the new mother that I was and tell her how it would all unfold and how things would be okay.
In the midst of all of the professionals, the appointments, the sleepless nights, the medical issues, the pain, the heartache, the stress….there was YOU. …..our beautiful black haired baby who has grown into a spunky, funny, determined and feisty little girl. You, who in your own way, has taught us more about ourselves, about pure love, about humanity and about life itself. And I know your birth not only changed our lives profoundly but you have touched everyone who has had the privilege of meeting you.
I never could have imagined that you would end up being my greatest teacher, guide and mentor. You have taught us that life will unfold before us without our control and that we will handle it however it comes. You have taught us the true meaning of unconditional love; deep primal love. You have taught us that sometimes we have to let go of the old to make room for the new and that growing and expanding can be painful even if the rewards are tremendous. You have taught us that life is mysterious and that our limited human brains simply cannot make sense of it for the most part. You have taught us that it is perfectly acceptable to be dependent on others for support when the situation seems more than we can bear. You have taught us that sometimes our greatest teachers do not come into this world in the form of wise, old women or scholars or experts but instead they arrive as a seven pound, fifteen ounce baby girl, gasping for air with a determination to stick around long enough to share their teachings with everyone who has the privilege of spending time in their presence.
As Maya Angelou says, “I wouldn’t take nothing for my journey now.” No, my love, I can confidently say that every step of this last ten years with you has been worth it all.
And so, I raise my glass to you, Meredith, the toughest, most resilient little creature, I have ever met. Thank you for coming to us and for making us all better people because you were born.
It’s 2:30am and I have been awakened by Meredith’s seizure although she isn’t jolted awake by it. They happen in her sleep but result in her body being contorted and her head cocked that she needs to be repositioned and untangled to safely continue her slumber. I, on the other hand, having been jerked out of my sleep countless times so far do not as easily return to it. My sympathetic nervous system is in overdrive as it has been for the last ten years and so rather than immediately drifting off to sleep, thoughts of all sorts quietly invade my tired brain.
As I steady my breathing and listen to her restful rhythmic inhalations and exhalations, my mind often drifts to pockets of time over the last ten years. It is in these quietest of moments, when the house is shut down and emptied of night nurses, caregivers, therapists and the myriad of other visitors who descend on our home each day, that I observe how adventurous my mind can be. It doesn’t drift to thoughts of war or fires or any other disaster that would surely keep a tired mother awake at night. It doesn’t go to fearful places that nightmares are made of even though this time of night makes many susceptible to these thoughts.
Instead, my mind wanders to miniscule pockets of time. Memories drift in that have no obvious significance. Moments that have happened that for whatever reason, my mind needs to re-visit. Random memories move into my mind without urging. One moment, my mind drifts to a moment in my labour where I knelt on the floor draping a birthing ball, making guttural sounds each time my baby’s head applied pressure to a damned lip of cervix. It is as though I observe these memories like a ghost visiting times past. I hover above looking down at that labouring mother who is me and then I move onto the next memory that comes up. This time I am at the children’s hospital. It is within the first year and I am in a room with a nurse who is hell bent on setting me straight about the future. “You know, she won’t always be this cute and you are going to have to accept that sometimes she will require sedation.” She stands between me and the door and there is no escaping her wrath…..her sheer frustration with a young mother who just won’t take her word for it. But instead of crumbling to the floor which is what my body wants to do, I stare her down and demand that she move out of my way. Which she does. In my mind’s eye, I see myself walk through that door and into the next memory waiting for acknowledgement. Now, it is the first night we have her home. She has spent a total of 70 days from the moment of birth until now in the children’s hospital. We have been sent home with her and it is late and we aren’t sure what we should do with her. We place her in the stork’s nest (a contraption that resembles a suspended bassinet), turn off the light and attempt to fall asleep as though the baby next to us isn’t attached to an IV pole and very seriously sick. Within minutes, she is screaming her inconsolable cry. The light goes on and we have no idea what to do next.
My nights unfold like this until eventually I doze off to sleep only to be jerked awake again by another seizure. And this is how it goes~ round and round like a broken record, skipping ahead and backward but never playing out a song to completion.
I believe that what is happening is my brain is figuring out the most opportune time to re-visit snippets of the past decade. Hundreds and hundreds of snapshots of life that for whatever reason stood out but were never fully processed. When you are launched into this wild, wild world of medical fragility and special needs, you do not get the time or space to ever process the countless times that your world gets rocked.
But in the quiet of the night, when all distractions and busy-ness have been lain to rest, my mind begins to heal.