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.
I am aware that many of my posts discuss some tough topics and are often tinged with sadness and grief. I find it easier to write about the hard subjects and since I am not one to sugar coat anything, it comes naturally to be blunt and honest about the realities of our daily lives.
With that said, it is Thanksgiving weekend here in Canada and as a follow-up to this post, I want to express what my heart is truly grateful for.
- First and foremost, I am thankful for my husband, Tim, because without our love for one another, there would have never been Meredith
- I am thankful for my health and resilience to have successfully mothered our beautifully complex child for almost ten years.
- I am thankful for our supportive families and our friends who have stuck by us and loved us through some experiences that are just so hard to bear in one lifetime.
- I am thankful that we live in Canada and specifically in our county where we receive support from our government to help us raise our daughter at home.
- With that support, comes the most amazing team of women who are our village and help us to raise Meredith. There have been a few over the years but presently, we are thankful for Amanda (with us 7+ years), Kelly (with us 4 years), Jenna (with us 3 years) and Nathania (with us just over a year).
- I am thankful for a safe home within a loving and supportive community.
- I am thankful for my mental health and my ability to somehow make sense of so many senseless things and to be creative and abundant in my work that I am passionate about.
- I am thankful for a stockpile of medical supplies, clean syringes, oxygen, and a brand new wheelchair that will bring comfort to Meredith.
- I am thankful that in less than 8 weeks, our baby girl who wasn’t expected to live past the age of 7 will turn 10!
- I am thankful for a good night of sleep and for my ability to sleep well when given the opportunity.
- I am thankful for the incredible amount of loving, caring people that I have met over the last ten years and for those I have met through this blog.
Happy Thanksgiving to all who celebrate this weekend!
Holidays are tricky for me. As much as I want to rejoice and celebrate, I also have a strong urge to crawl into a cave and retreat until they are over. This urge has increased as the years have gone by. Initially, I put on a brave face and made the best of it; dressing Meredith up for Hallowe’en and taking photos even though she was uncomfortable and probably confused as to why I was wrestling her into a giraffe costume or sticking rabbit ears on her head. Hallowe’en involves me sitting outside on our porch giving out treats as we cannot have children banging on the door for fear of waking Meredith. Each year I don a witches costume and sit outside with a big bowl of candy and play the role of a friendly witch who also scares the hell of out the neighbourhood children.
But each year, admittedly, I feel sadness as I see the excitement of the kids in their well-thought-out costumes and recall the sheer thrill of dumping a pillow case full of treats onto the living room floor once we exhausted trick-or-treating our neighbourhood. Something our own child will never experience.
At Christmas, we started out decorated the tree to show her the lights which she found interesting the first time but then not-so-much after that. I found myself setting up and tearing down a fully decorated tree that no one seemed to care too much about. Each year we go through the motions of the holidays, pretending we do not notice the gaping hole in our hearts that comes with Christmas morning and a child who will never understand the anticipation of Santa’s arrival, opening presents Christmas morning and getting exactly what she had wished for. But each year, we participate in the family functions and put on enthusiastic faces while we wait for the day after to exhale and feel relief that another holiday is over.
This weekend we are celebrating Thanksgiving here in Canada. I actually love this holiday because it is about gratitude; something that I have become more and more aware of with each passing year. I have so much appreciation and gratitude for so many things. This holiday celebrates all of the blessings that have been bestowed upon us. I also love it as it tends not to focus on children and the activities that children partake in for most holidays.
This year, things are different, though. When Meredith was only weeks old, I read an article that I found on some Australia cerebral palsy organization’s website. I searched for it but have had no luck finding it again. The article was basically a letter to friends and family of the one affected by special needs. A part of it talked about the immense undertaking travelling is with a child like ours and the amount of equipment, supplies and planning involved in attending functions away from home. I recall reading this article and thinking that would never be us but then I was a new mother and could not fathom this little baby in my arms growing almost as tall as me and weighing 45 pounds. I also did not foresee that this child would not enjoy or tolerate sitting in a wheelchair and that a decade later, we would find ourselves having to be separated on a holiday like today.
This morning, my husband left for his family’s Thanksgiving celebrations and Meredith and I had to stay behind. This year the dinner takes place about 200km from our home, a distance which Meredith could never tolerate by car. We only have a little bit of help today which would not allow for us to go together and be home in time for the end of our relief worker’s shift.
Last Christmas, we drove 100km to spend the day with my husband’s family and found it extremely difficult to care for Meredith out of her environment which included holding her for 5+ hours and coping with all of the activity and noise of a typical large family gathering. She isn’t as compact and versatile as she used to be and we have had to accept that adjustments have to be made accordingly.
It isn’t easy coming to terms with this and we will need to rely on our creativity as we enter into our second decade of parenting. Smaller dinner parties in our home may need to take the place of large gatherings far away and we may need to accept that we will be attending things without Meredith at times knowing that she is secure and well cared for at home. My own family’s gatherings usually take place 400 metres from our home which is do-able because we can be there in under three minutes and can leave after an hour if Meredith isn’t coping well.
Today, I am thankful for so many things as I reflect on the changes happening yet again in our family trusting that we will find a solution that works for everyone.