I think of them often. You know, the mothers who came before me. The mothers who were the trailblazers in this land of special needs.
They are the mothers who were urged by not only the professionals who knew best but by their family members to place their babies in institutions; a better place for children like these. I think of how they had to take their most vulnerable child and leave him or her in a large facility filled with other people’s children who were unable to be cared for at home. I think of how they must have been broken by that. I think of how they must have tried to go back to living their normal lives as though it was perfectly natural to leave your child in another city to be cared for by strangers. But they didn’t have much choice. They were giving birth to a child with special needs in a society that hadn’t evolved enough to understand that an institution isn’t a suitable home for children with special needs in most cases. I am acutely aware of the fact that if we didn’t have all of the support that we have, we would not be able to care for Meredith at home either.
And then I think of the mothers who refused to hand their children over and were sent home with sick children and told to love them til their death. The hours spent trying to give them food because feeding tubes weren’t an option. Many times a diagnosis wasn’t available and they cared for children with medical needs well beyond their capabilities and without the “village” that most of us have today. All they had to go on much of the time was love. And that was all.
The mothers that came before me fought for their children’s right to an education and their right to inclusion not knowing at the time that they were fighting for all of our children. They did it in isolation because children like ours were much more of a rarity then and social media and the Internet were stuff of the future.
I remember starting out on this path and meeting mothers who were further down the road than we were. One mother calmed my fears and worries through email. Her daughter was fourteen then and she gave me such hope knowing that life could be okay again; it wouldn’t always be a crisis. And our first Case Manager with CCAC, had some inkling of what we were going through as she, too, was the mother of an adult son with special needs. She gave me a button that said “Mother from Hell” on it and told me to wear it when we went to the children’s hospital or to doctor’s appointments. She gave me the courage to allow my inner mother bear to emerge when necessary. And more recently, a fellow author and mother of an adult son with special needs and who is a lot like our Meredith, told me, as she was about to go on a tropical vacation, that one day, my husband and I would be able to do the same. And I believe her.
I think of them all…..the ones I have met and the ones I have never met. This Mother’s Day, I salute you and thank you for making this path we are on a little less treacherous. By wearing it down with your own footsteps, you have allowed our steps to falter less.
We have completed another big step on this adventure of parenting Meredith. In the last few weeks, we have had a lift system installed in our main floor bathroom and in Meredith’s bedroom. Since December, when we first started entertaining the idea of taking this next step, we have both looked forward to it with the ever increasing growth and weight of Meredith and dreaded it as we recognize that our little girl is rapidly becoming a big girl.
In a previous post, I described how it is difficult to appear ‘normal’ when you are surrounded by equipment that symbolizes that in fact, nothing is really that normal~ the IV pole attached to your child, the wheelchair sitting at the back door, the syringes sharing a drying mat with the plates and cutlery, medications sitting side by side with cold medicine, fish oil and condiments in the fridge, the 40 foot wheelchair ramp attached to our back deck, to name a few. As Meredith grew so did the list of items in our home that were blatant reminders that our reality was one that we never desired or dreamed of.
I have a very hard time allowing my thoughts to travel back to a time when Meredith was held fifteen hours/ day. I held her for 8+ hours of that myself most days; her little body arching and writhing as I moved with her amazed that such a small person could expend such strength and energy. When it was time to get a wheelchair, we welcomed the potential relief it could bring but we also hated the thought that our perfect little baby would find her way around the world confined to a wheelchair. It turned out that she couldn’t tolerate it and so we went back to the holding until we could no longer manage. As we approached her 9th birthday, we finally freed ourselves (and her!) from our arms and her world expanded as she went from stander to futon to wheelchair for walks outside.
Since December, Meredith’s “spasms” have been brought under control by seizure medication. Consequently she is moving less, resting more and packing on the weight at a remarkable rate. I felt the urgency of a lift system by the fall knowing that we needed to have a back-up before it became a necessity. My husband was more hesitant as he wasn’t feeling the strain of lifting and carrying Meredith as much as myself and the workers were and truthfully, it was challenging to wrap our heads around the fact that her bedroom, which we specifically designed to NOT look like a medical space, would now have a white tracking system drilled into the ceiling.
And so as we waited for funding to get organized and installers to be available, we had to gradually accept that this was just another step on the ladder of raising a child with disabilities. It would only make sense that all of these things that make life a little easier on us should be welcomed and celebrated. They also act as signposts that we are leaving one stage behind and entering another one.
This one is admittedly tough as I know my arms and my heart will have a harder time letting go of the familiarity of holding this child for 10+ years. I also know from past experience that in no time, we will be pros at using the lift system and will wonder how we ever managed without it. And that is what I choose to focus on.
There was a time (a long, long time ago) when we used to sleep naked. It is so long ago that I am not even certain if it is a memory or a foggy fantasy. Nevertheless, after Meredith was born, I begrudgingly went to bed with clothes on knowing that at least a dozen times, I would be leaping out of that bed to Meredith’s crib side. As time passed and night nursing services were acquired, I still wore pajamas to bed knowing that at some point, I would be beckoned and would have to go downstairs for one reason or another.
We have reflected often on the many wonderful things that have occurred because Meredith was born as well as those things that have been lost as a result of caring for our beloved child. Things like a lack of privacy which includes hushed conversations, sleeping fully clothed and creativity when it comes to maintaining intimacy in our relationship. We are so beyond grateful for the support we receive in the form of our family relief workers (all four of them) and our night nurses that we hesitate to complain and boo hoo about our lack of privacy. The reality is that although it is a part of our “normal” life, it is something that we both have had a very hard time accepting.
So last night, I had a soak in the tub with Epsom salts, baking soda and lavender oil. I climbed out of the tub and put on my thick, cozy robe to go downstairs and give Meredith her last meds and get her feed started before bed. After saying good night to the nurse, I went upstairs, disrobed and decided to throw caution to the wind and climb between the sheets stark naked! Yippeeee!! As we drifted off to sleep, my husband and I chuckled at my recklessness knowing that Murphy is never too far away. Besides, I had not been called from our bed in ninety-three nights (yes, I keep track of these things~ they are the equivalent of gold stars on my chart of life) so it wasn’t really a daring act.
At 1am, I got up to use the washroom and on the way back, just as I was partway across the top of the stairs between our bedroom and the bathroom, the nurse bolted from the living room sofa to the bottom of the stairs and called out to me. I am sure that all she saw was a streak of white light from my alabaster body making a leap for the threshold of our room. I called out, “Just a second, just a second!” as I frantically felt around in the dark for my robe. I went to the top of the stairs to answer her question and then returned to bed cursing Murphy and his law.
This incident is one of countless that are a part of this life of caring for Meredith. There is a balance in welcoming so many people into our home round the clock while also ensuring that some sense of our privacy is preserved. It’s tricky because we want our caregivers to feel comfortable in our home while at the same time we, too, want to feel a sense of ease and comfort.
Apparently that does not include nudity. We’ll save that for the nights when we manage to get away and can trust that we won’t be unintentionally flashing our caregivers.
My writing is sporadic. The hectic-ness of everyday life keeps my head spinning and my heart pounding to the point that inspiration doesn’t stand a chance. I am so busy at times that it is like a whirlwind and I know, deep down, that some part of me thrives on that energy.
The book is coming along and is now being edited in portions which makes the reality of it far more tangible. Ten more chapters to do some finishing work on and then they, too, will be off to the editor. I am really starting to believe that it might actually materialize into a book I can hold in my hands by the fall. Now I must begin the challenging step of finding a publisher. I want to go the old fashioned route by actually having it published by a company although I am always open to suggestions. I have never written a book and I may never write another. As the end draws nearer, I have actually entertained the possibility of writing another book. I am pretty sure I was drinking when I had that fleeting thought.
My goal this spring, though, is to write more here, at this blog, while simultaneously finishing my book. I think the usual life expectancy of a blog is around 2 years and I can see why. There is an abundance of topics and things to get off your chest and out of your mind when you start out. In the beginning you want to post several times per week and even daily but over time most can’t keep up that pace. I am always amazed at the bloggers who write every single day. There is a lot going on in my head but certainly not enough to write something really interesting on a daily basis.
I guess the point of this post is to hopefully connect with those of you who still check back once in a while only to discover I still haven’t written a new post. I hope to post at least once per week and maybe more. This winter has been the never-ending winter from hell here and today the sun shone and things were melting. I didn’t wear a jacket today for the first time since September and everyone seemed to be smiling and a little on the giddy side. I feel invigorated and ready to take on the world. My brain feels like it is awakening from a long, restless sleep.
More to come. Hope you stick around.
I remember those very early days when the fear of the future would slice through me like razor sharp knife. It was a balancing act between feeling hopeful and positive and being completely washed away with terror of the “what-if’s” of the next twenty years.
I recently joined a private group on Facebook for parents of children who ended up to some degree or another like Meredith. I read the posts of the mothers and fathers who are just months even weeks into this adventure and I can be transported back to those early days in the time it takes to inhale. I can feel my heart tighten a little as I read their pleas for help and their descriptions of what their child is able to do (or not do) and what that could mean? Is it possible that they will be able to crawl, walk and maybe be okay in the end? I can feel their fear laced in with their carefully chosen words not wanting to unintentionally insult those of us who ended up with the children that they fear their baby may become.
Meredith spent the first ten weeks of her life in a children’s hospital and before sending us home for good, we got to have a weekend pass. It was a trial of sorts to see how we managed for two nights and two days on our own with the safety net of the hospital waiting for our return Monday morning. This must be what it is like for people to get a day pass from jail. That first night was nothing short of a nightmare and by morning I was calling my mom in tears to come and save us. She arrived with my younger sister in tow to spend the rest of the weekend helping us figure out how we were going to manage the enormous caregiving tasks that were involved with parenting Meredith. At some point during the weekend, I found myself lying on our bed in tears about how we were going to do this. I mean the first weekend at home had been a disaster and we had to figure out how we were going to proceed for the next 20+ years. I was paralyzed with fear and sheer panic. My sister lay beside me on the bed feeling empathetic yet helpless. I remember her wondering aloud what we would do when she reached puberty and what would we do when she got her first period. I recall that moment in time so vividly because it was in that very moment that I made a conscious decision to do everything in my power to stay in the present moment. I remember taking a deep breath and reassuring myself that in this precise moment, all was well…..well, sort of but the bottom line was Meredith was only ten weeks old and there would be plenty of time to worry about puberty. We would deal with everything that would come our way as it happened and I was not going to waste my valuable energy on worrying about what was inevitable but had not yet unfolded.
This way of thinking has kept unnecessary anxiety at bay over the years. Meredith started showing signs of early puberty by the time she was 8 years old; a common side effect of her type of brain injury. As she gets older, we are seeing more signs and it is okay. It isn’t anywhere near as terrifying as I thought it would be back when I lay on my bed literally shaking with fear of the future. As with every single event and unexpected experience that has come to us over the last decade, we have somehow managed to live through it. I have chosen to spend less time worrying about what may come so that I can spend the majority of my time enjoying what is. This present moment is our reality. The future is going to unfold no matter how much I worry about it or attempt to control it. It is easier to just let it be. The future can take care of itself.
I have been absent from this blog as I make it my 2014 mission to finish a book I started in December of 2011. Two years have passed since I took on this enormous undertaking, naively assuming I could hammer it out in a matter of months. Well, I was obviously mistaken as it has been over two years since I wrote the first words. Weeks and even months have passed between installments and there have been many times I wondered why I thought it was a good idea to ever think I could write a book.
The process has been one of faith a and I wished for some sort of “How to Write a Book” manual. Like parenting a child with extraordinary needs, I quickly learned that this type of endeavor is as individual as the writer. I am grateful to the published authors who are also my friends for their encouragement and mentoring. And still I question what I was thinking when I announced that I would be writing a book.
When Meredith was born we were overwhelmed by the care and concern of not only our friends and family but also our colleagues in our respective professions. We would return home at night to countless emails and phone messages wondering how we were doing and if there was anything we might need. My husband created a website early on to use as a form of communication for everyone. It was a place where I wrote almost daily updates and posted photos of Meredith. In a short amount of time, this little website made its way around the world and the guestbook was like a lifeline for us. Each day we would return home weary and exhausted. Reading the messages left in the online guestbook became a ritual of sorts.
I decided that publishing this original blog in my book would be appropriate to illustrate that we, too, were once brand new parents…..frightened, overwhelmed, anxious as well as over-the-moon and hopeful. I thought it might be a good baseline for the rest of the chapters that follow. I have been reading through it for the first time in ten years and I have been amazed at the many things I had forgotten. I always believed that Meredith’s aspiration of meconium caused the lack of oxygen when in fact she experienced a moment of asphyxia which likely caused her distress consequently leading to her passing meconium. The aspiration was secondary to that first abrupt asphyxic episode. I also completely forgot that she required a blood transfusion after her g-tube surgery. So many little details that had been erased from my memory.
The more I read the more I regretted not keeping a journal all of these years. I even considered writing a blog post directed at new parents recommending that they keep a journal, even a weekly journal that records where they are at in their lives as parents and as a family. I began to wonder what other details had been wiped from my brain. What things had I forgotten about?
The more I read the original blog, the more I noticed how my emotions were surfacing. It was hard to go back and revisit the naivety of those early days when I believed that if we worked hard enough and prayed hard enough that the outcome would be different. I wished I could go back and wrap my arms around that mother who was bound and determined to set those doctors straight for stating that Meredith would be as complex as she eventually turned out to be. I smiled at my determination and my drive to somehow change the expected outcome. I realize now it is a part of this whole journey.
And then I also realized that perhaps keeping a record of every moment of the last ten years wouldn’t have been as beneficial as I previously thought. Maybe we aren’t supposed to remember every single detail of our lives. Maybe living through some of the most painful and frightening experiences of our lives is enough and it isn’t necessary to capture them on film or on paper. Maybe moments are to be experienced and then sifted through; keeping the parts that our hearts can carry for the long term and putting to rest the ones that are too heavy to bear. The joyful moments can be beckoned with ease because they are light and airy and easy to transport through time.
I suppose I do not need an actual visual record of it all because it is the lessons that emerged as a result of all of these experiences that really need to be expressed. I trust that the experiences that have been long forgotten have no business in the present time.
I am grateful for this little time capsule that has allowed me to travel back to the first year and revisit all of those new, first moments and feelings and I am equally grateful that the journal ended when it did.
Whatever it is that you celebrate at this glorious time of year, I have a few wishes for you that may or may not apply to your circumstances. Hopefully you will recognize the ones that were meant just for you.
They are (in no particular order):
- A full night of uninterrupted sleep now and again to refresh you during the toughest times and to remind you of how it feels to be rested.
- Pharmacy staff who can be understanding of your forgetfulness and last minute prescription orders and who reassure you that the chloral hydrate will be ready by the end of the day.
- Family and friends who will truly ‘get’ that your reluctance to travel to visit them in their home is not an excuse to stay away from them but instead, your reality, of parenting a child with complex special needs.
- Relief from whatever guilt plagues you be it the feeling that you aren’t doing enough to help your child or that you fantasize about running away to Kalamazoo (unless you live in Kalamazoo then you might fantasize about running away to Nicauba)
- Caregivers who not only come into your life for your child but caregivers who cross paths with you and help YOU to stay well in body, mind and spirit.
- A healthy, loving and committed relationship with your significant other. May you be reminded throughout the year why you fell in love and may the tools and skills come to you to help you in staying in love even in the midst of unrelenting stress.
- Time for yourself………ideally a an entire night away with your partner, some friends or alone but if that is not do-able then time carved out for you to remember who you are when you are not mothering or fathering.
- Light in your darkest moments……..that you will feel the love and support of your community when you feel most defeated.
- Funding to come through when you most need it for medical supplies, therapies and Family Relief Workers. Along with that, I wish you Developmental Services Coordinators to help you navigate the system and to advocate for you so that you are equipped to care for your child.
- The ability to remember that “This, too, shall pass” especially when anxiety and fear sweeps over you and you cannot think rationally or clearly and you really do believe that whatever it is that is happening will never end. It will.
- Patience in not only performing the endless tasks in caring for a child with medical fragility in your home but patience in dealing with all of the people you must be in contact with to help you care for your child.
- A sense of humour when you are hit with one thing after another and you are left with no choice but to laugh in spite of it all.
- The realization that you are walking a privileged path. Even though it may feel anything but privileged, trust that it is indeed, a privilege. At the end of the day it may instead feel like a punishment, hardship, cruelty, or a cosmic slap in the face but this is not so.
Wherever you are in the world and whatever you celebrate, may your homes and your hearts be peaceful and may 2014 be one of new discoveries, vibrant health for you and your children and may you be blessed with unending endurance and resilience. These are my wishes for you.
Until the new year;
Julie and family
“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.