Skip to content
Apr 24 15

Due Date

by julie

With just under two weeks to go until my first book launch date, I have to say that releasing this book feels like I am about to give birth to that second child we never got to have. This journey of writing for the last three years and attempting to put words down that would hopefully bring some relief to new parents walking this path of parenting has been nothing short of a labour of love. As the words spilled out, I realized that this book had the potential to positively impact not only the new parents whom I wrote it for initially but also everyone who comes in contact with families like ours from therapists, to doctors and nurses to family relief workers, teachers, educational assistants and our extended family and friends who love us.

If writing and publishing a book is akin to birthing, I would say that my pregnancy has been smooth although lengthy. Once the book was completed in early December 2014 and we began the process of editing and preparing it for press, I felt as though my labour had been initiated.  Labour was arduous at times but definitely do-able and manageable with the support of my “doulas” in the form of my husband, Tim, our family relief workers and nurses who cared for Meredith allowing me time and space to work on the book and in my friends and family members who never doubted me even when I was certain there was absolutely no way this book would ever reach completion.

Now, just under two weeks from my “due date” I feel as though I am running out of time and I am questioning whether or not I am ready to actually do this and release this “baby” to the world. I feel excited and anxious, vulnerable and empowered. I feel as though I am in nesting mode~ tying up loose ends and getting my summer ceremonies written well in advance in anticipation of the attention my post-book period is going to require. And as all labouring mothers can attest to, even in the darkest most challenging moments, there is always the knowledge that their baby will be born one way or another. There is a point of no return when you realize that THIS is actually happening!  Receiving these photos from my publisher last night, made my “baby’s” birth all the more imminent.


Yes….those are the pages of MY book being printed!!


And these are my books ready to be packaged and shipped out today!

My motivation for writing this book was to help those parents living this life in isolation with their child who is dealing with medical fragility or special needs. In the end, if this book makes a difference in their outlook on what lies ahead, if it gives them hope and if they gain a few insights that allow them to be gentle with themselves, then all of the hard work, blood, sweat and tears was worth it. We never know who our children will grow up to be. I am excited to see  how my “baby” develops and grows.

Information about buying the book:

For those of you who live in Ontario, here are the book launch dates/ locations:

COBDEN: Wed. May 6th from 7-9pm at the Whitewater-Bromley Community Health Centre, 70 Main Street. Launch and reading!

OTTAWA: Fri. May 8th from 7-9pm at Singing Pebble Books, 206 Main Street. Launch and reading!

TORONTO: Sat. May 9th from 1-3pm at Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road. Launch plus live interview and Q&A.

For those of you locally, who cannot make any of the launches, you can purchase the book directly from me for a limited time. I will also be at Arts in the Park in Stittsville on June 7. A link will be up soon on this website to the publisher’s website where you can also purchase books after May 15th. E-books will be available soon. Don’t hesitate to reach me if you have questions or have difficulty getting your copy of my book.



Jan 15 15

Mission Accomplished

by julie

I admit, I am not the most consistent blogger and for good reason. For the last three years, I have been working on a book. I didn’t write every day in that three years and sometimes I would go months without writing but the act of writing a book was a part of my life for the last three years, nonetheless, and was an undertaking far more strenuous than I could have ever anticipated.


The great news is that my book is finished and will hit the shelves, so to speak, sometime in the spring 2015! To say that I feel a tremendous sense of relief would be an understatement. On top of relief, I feel sheer excitement at the thought of holding MY book in my hands, as well as, sheer terror at the thought of releasing it to the world.

It was so easy in December 2011 to announce that I was writing a book and it was easier still to tell people, “yes, I am writing a book.” Keeping it in the present tense meant that it was an ongoing process and there wasn’t the pressure of what finishing it entailed. But I did finish and for the last few weeks, the book has been edited again and will go through one final edit before heading to the first readers~ those who will provide reviews for the back cover! The cover design will be revealed soon enough and this crazy idea of writing a book will be a reality and I can start saying, “I wrote a book.” I will be a bono fide author.

I know there will be things, after publication, that I will wish I had included in this book. Hopefully, a second edition will come after it is a bestseller :-) and additional chapters need to be added.

I am excited to experience the unfolding of the next few months. This website will be completely renovated sometime in February/ March with a brand new blog about our life in this moment on this adventure of parenting through medical fragility. There will also be an option to pre-order and purchase the “What I Would Tell You” book through this website.

A lot in store for this new year of 2015. Bring it on!

Dec 18 14

All I Want for Christmas…..

by julie

Whether you celebrate Christmas, Hanukkah or the Winter Solstice, gift giving and receiving is a part of this time of year. If you know or love a parent/ caregiver of a child with special needs/ medical fragility, you may wonder what kind of gift they would most appreciate. I have come up with my own top ten list of gift ideas. This list can come in handy for Christmas, birthdays, Mother’s Day or any other holiday where gifts might be given or perhaps you can just give a gift for no reason at all.


1) SLEEP: How divine it would be if there were a pill to ingest that would provide the same benefits as 8 hours of sleep. The inventor of such a remedy would definitely be in the running for the Nobel Peace prize or even Sainthood. Yes, I know there are actual sleeping pills but the problem for many parents like me is not an inability to fall asleep. The problem is that we are not able to sleep due to round the clock care giving or lack of night nursing. Until this magic pill is invented, why not figure out a way to give your friend or loved one a few hours of sleep. Take some time to be trained in the care of the child and then offer her 2 or more hours of solid, uninterrupted sleep. There is nothing like a chunk of consistent zzzzzzzzzzzz’s to refresh and rejuvenate a tired parent.

2) MEALS: Believe it or not, bringing a ready-made dinner to a family who is dealing with above-normal drama and busy-ness of life, is more valuable than gold. Imagine calling a parent of a child with special needs/ medical fragility and offering to bring over dinner. If you do wish to give this gift, be sure to find out any dietary preferences and food sensitivities so that everyone can enjoy. You could give a coupon that entitles the recipient to one dinner per week for a month.

3) SELF-CARE: One thing parents like me must do is practice self-care so that we are better able to care for our child (ren). This is often tricky because there is usually little time and little money to splurge on oneself. Giving the gift of a massage, a pedicure, a facial or even paying for an appointment with a Naturopath, Homeopath or a Therapist, will be gratefully accepted. Arranging for childcare while she/ he is attending the appointment will give you bonus points.

4) HEADSET: When our daughter turned 2 years old, a friend gave me a telephone headset for a gift. It had never occurred to me to even think of purchasing one and yet at that time, my only contact with the world outside of our living room was through the telephone. Unfortunately, conversations were kept short as I needed both hands to handle Meredith. My neck would very quickly get a kink and I would feel the aftermath of muscle strain from holding the phone in the crook of my neck while hanging onto my daughter as she thrashed about. This is one of the most practical gifts I have ever received to this day.

5) BOOZE: People are often at a loss for what to give Meredith for her birthday or Christmas. I half-jokingly respond with, “When in doubt, a bottle of wine for the parents is always appreciated.” Seriously, though, sometimes having a glass of wine with a dear friend or your spouse/partner gives that much needed self-induced relaxation/mental break from your life. Disclaimer: I am not promoting the use of alcohol and/or drugs to numb or deny emotions. I am merely suggesting that sometimes a glass of a full-bodied red or a crisp white can be a nice end to a rough day.

6) TRAVEL COMPANION: In our situation, we cannot travel anywhere alone with Meredith. There must always be another adult sitting beside her in the back while another adult drives. For some parents/ caregivers, this is not an issue but that does not mean doctor’s appointments and outings are easy. Offering to assist your friend or family member on trips to the hospital, clinics or other appointments will give them a sense of relief and will take some of the responsibility off of them. They will be able to grab a bite to eat, use the washroom and focus on information being shared at the appointment if they have an extra set of hands and eyes to help out.

7) TIME: As a friend or family member, you may feel helpless much of the time depending on the complexities of the child. It may be impossible for you to even begin to learn how to care for the child in a way that would allow the mother or father to leave the house or go and rest. If you are willing, your time can be a wonderful gift to a parent like me. Offer to hang out with the child for short periods so that the mother can take an uninterrupted shower or bath for example or make a phone call to a friend or work on the book she is writing :-) If it is the holidays and company is coming, giving the gift of your time to provide the parent with an extra set of hands for cleaning, preparing food or helping with the care of the children, can be invaluable to them.

8) GIFT CARDS: Retail therapy can be just that: therapeutic. It is challenging for some of us to get out and shop for ourselves and sometimes living in a rural area prevents one from getting to the city to shop. Giving gift cards for places like The Body Shop, Lush, Bath & Body Works, Chapters, Amazon or clothing stores will give the mother, for example, the option of shopping online as well as treating her to something for herself. There is nothing like a new pair of jeans, shoes or good quality under eye concealer to lift the spirit.

9) RELAXATION: Although I am not one to talk, incorporating some types of relaxation into our lives can have huge benefits. Giving a gift of a beginner’s yoga DVD with a mat or a CD of guided visualizations for stress reduction or good quality essential oils can all be gentle reminders of how crucial it is to carve out even ten minutes per day for ourselves specifically for the purpose of finding some peace and quiet. We may not have the luxury of travelling to Bora Bora but we can close our eyes and drift off to our “Happy Place” via a guided relaxation CD.

10) LAUGHTER: There is nothing like a good, side splitting fit of laughter to unleash a dose of oxytocin into the bloodstream and to relieve one of tension and stress. Maybe you are that one person that has a knack to crack up your caregiver friend/ family member. Your inexpensive yet invaluable gift, would be to steal him/her away for an hour or more to just be silly and laugh. This can include going to a movie that you know is bound to bring on the giggles or simply hanging out together and reminiscing about events in your life that make you smile. I have a few dear friends, two sisters and a brother who know how to make me break down into laughter. This might be one of the most priceless gifts you can give.

These are just a few thoughts and ideas that come to mind as we anticipate Christmas Day. I would love to hear some gift ideas that you have loved and appreciated as a mother, father or caregiver of a child with special needs. Leave them in the comments below! And Happy Hanukkah, Joyful Solstice & Merry Christmas to all of you! May your days be merry and bright!

Dec 5 14


by julie

I am awake at this ungodly hour of 4:40am. Eleven years ago at this time, I had been up half the night in early labour. I remember it all quite well but haven’t spent much time reflecting on the day Meredith was born. The last eleven years have left little time for remembering what happened in the moments leading up to her birth and when our lives were forever changed.

Birth is such an extraordinary experience in a woman’s life that the majority of women remember their births in vivid detail while some women spend a lifetime trying to forget it if the birth was difficult or even traumatic. Women are forever changed by their birth experience regardless of the outcome. There is nothing else that challenges a woman more deeply in all aspects of her being and we carry that with us for the rest of lives whether or not we are conscious of it.

Contrary to popular belief, I had a positive birth experience. Some might argue otherwise but from where I was standing, it was a beautiful labour and birth. We had bought our first home in February of 2003 and within weeks, I discovered I was pregnant. Tim and I made an educated decision to give birth at home after an uneventful pregnancy and were in the care of skilled and caring midwives and our doula.

On December 5th 2003, I was up most of the night with mild contractions and called my chiropractor at 6am to come to our home and give me one last adjustment before things really picked up. He arrived at 6:30am and could feel our baby’s legs high up under my rib cage. Once he adjusted me, contractions increased with intensity and once they were coming every 4 minutes, we called our midwife as I knew things were really starting to roll.  She arrived at 9:30am and assessed me to find that I was already 4cm dilated. We called our doula, Tammy, as well as our friend, Jessie, who was in charge of taking the photos, to tell them that there would be a baby born on this day. My mom was also on her way to oversee the many tasks involved in a homebirth. It was a beautiful winter morning with every surface (each fencepost, branch and twig) covered in a blanket of sparkling frost.

I recall being amazed by the contractions and at the same time not being surprised by the intensity of them. I had been with 99 women at this point as a doula and had witnessed firsthand, over and over, the sheer power of birth. I was in awe of the fact that I was actually labouring as opposed to supporting someone in labour. It was surreal to be on the other side of the experience.

Our care team arrived and everyone surrounded me with their strength and support and I remember feeling completely safe in the arms of my husband, Tim, and in the sacred space that the other women held for us. I spent the majority of the time labouring upstairs in the bathroom which had a shower, a soaker tub and lots of space. I was most comfortable sitting on the toilet and staring out the window that was opposite me across the room. At about 1pm my membranes ruptured and our midwife announced that I was now 7cm and that we could anticipate our baby’s birth by 3:30pm. I had always planned to labour efficiently so was feeling very motivated to know that I was getting the work done as I had intended.


Labour progressed well and I have flashes of moments during this intense time. Tim never left my side and I remember trying to convey to him the intensity of each contraction but being unable to speak. They were sharp and took my breath away and I remember how helpless he appeared as he tried to do anything to ease my pain. But even though I was washed away with every rising contraction, I felt grounded and strong and not once did I feel like I needed to have pain relief. With that said, I do remember thinking that I could completely understand why women choose epidurals.

I remember thinking I would spend the majority of my labour in our tub but lying in it was excruciating so I spent time standing or squatting in ankle deep water instead. I am a little foggy on the times but I think that around 3pm, my midwife checked and I was 9.5cm dilated with a stubborn lip of cervix that remained there until 5pm. This was probably the most challenging of it all as I experienced insane contractions while at the same time getting an urge to push at the peak of the contraction. I panted my way through the urge to bear down not wanting to cause swelling on my cervix. We tried all kinds of positions and maneuvers but that lip of cervix was hanging on.


Finally, that lip moved out of the way and a powerful urge to push took over and second stage began. By this time I was sitting on the birth stool in our master bedroom and everyone had gathered close to encourage me through each surge.  I was so astounded by the power of pushing. I couldn’t believe how my body just took over and I respectfully got out of my way to let it do it’s job. I will always remember Tim telling me that he couldn’t believe the muscles in my back that would tense and appear with each contraction.  There is nothing as magnificent as witnessing the incredible strength and endurance of birth.

I pushed for just under 2 1/2 hours by the time her head started to crown. My doula helped me “pah-pah-pah” through the urges to gently ease her head out and I remember distinctly thinking to myself how funny it was that I was the one birthing and not the one guiding a woman with  “pah-pah-pah’s.”

Meredith finally slipped out of my body at 7:23pm into the hands of my mother; her Nanny. At that time I was on my hands and knees so I spun around to look down at our beautiful, black haired baby. Oh she was a beauty and I couldn’t believe we had a girl! I was certain I was carrying a boy. What a pleasant surprise!

We knew her name would be Meredith Ocea and so as she struggled in those first moments, we called to her to stay with us. We called to her that we needed her here and that she belonged here with us. As most of you know, things changed in that moment which resulted in the adventure that we ultimately embarked on.

Today, on Meredith’s 11th birthday, I want to focus on her glorious birth aside from the unexpected outcome of it all. I will always be joy-filled that I was privileged to experience pregnancy, childbirth and motherhood.

Most of all, my heart is full of gratitude that we have been gifted with another year of life with Meredith. Happy Birthday, my love. May we share many more.

Nov 19 14

Holding Hayden & Owen

by julie

I have held a lot of babies in my time. It is an added bonus of working as a birth and postpartum doula. I don’t hold nearly as many as I used to but I still get to fill my arms with baby love at my monthly breastfeeding mothers group.

You have heard me mention at least 600 times before that we held Meredith for fifteen hours per day for 8+ years. We still hold her every day but for very short periods of time like in the morning when she first awakens or before bed.

When you hold your child with cerebral palsy for hours a day and for years on end, you grow very accustomed to the unique patterns of movement. I wrote in a past post that “she is like an extension of me (and her father) and holding her is like a dance that we have rehearsed and perfected over the years. We intuitively anticipate her movements milliseconds before they happen. She throws her head back and we stop it with cat like reflexes. She curls her left arm up like a chicken wing as though she were about to throw a punch and we know that micro seconds later her she will thrust her pelvis outward. If you are not used to holding her, this particular move will have her launching off of your lap onto the floor if you are not ready for it. Her body and the way she moves it is as familiar as my own. ”

So it only made sense then that the longer I held Meredith the more unfamiliar I became with holding neuro-typical children. My sister had four children after Meredith was born and as each one grew and developed, my husband and I would hold them as though they needed trunk support indefinitely and we feared accidentally yanking out their feeding tubes (which none of them actually had). My sister used to laugh when Tim would hold our 15 month old niece, for example, and  have his hand placed on her upper back and neck anticipating a sudden throw-back which, of course, never happened.

Three weeks ago, I flew to Portland, Oregon to attend the United Cerebral Palsy of Oregon and SW Washington family conference. During a brief intermission of my keynote address, I was approached by a young mother and her baby boy, Hayden,  who was about 21 months old (if my memory serves me correctly). I asked to hold him and she warned me that he was heavy. Heavy? It’s all relative. It was so wonderful to hold a child that reminded me of Meredith as a baby. For the first time, I held someone else’s child in a way that came naturally to me.

That evening, we gathered for drinks and conversation with professionals and parents who were attending the conference. One particular mother arrived with her son, Owen, who was sitting in his wheelchair. I had first met them right after the keynote that morning. Owen’s mom had been a follower of this blog and had read everything I had ever written. It was amazing to meet her in person. Owen was in a wheelchair identical to Meredith’s and although he was half her age, he was about the same in weight. Seeing him that first morning made me very, very lonesome for Meredith.

When they joined us at our table that evening, Owen was fidgeting and squirming in his chair. His mother explained that he wasn’t a big fan of sitting for long periods in his wheelchair (sound familiar?). I offered to hold him if she was okay with that. I scooped him into my arms and he snuggled in for a big cuddle. I think he felt secure as he could sense that I knew exactly what I was doing. He just looked at my face and smiled making me even more homesick for Meredith.

Julie and Owen  10.24.14

Holding Owen (photo posted with permission)

These two experiences were the first  in almost eleven years where I held two children ‘like” Meredith. Out of all that happened during the conference, these moments of holding Hayden and Owen stand out to me most.


Nov 18 14

To Portland, With Love

by julie

Three weeks ago, I travelled to Portland, Oregon, accompanied by my dad, to give the keynote at the United Cerebral Palsy of Oregon & SW Washington  family conference. Since my return, life continued on at an abnormally hectic pace leaving me little time to reflect on this journey.

Many have asked me how my trip went and it really feels like a long time ago that I was flying across the country to give this talk. I had been contacted a year earlier by Susan Cushman, Family Support Director for the organization. She contacted me after reading “What I Would Tell You” and asked that I come to Portland and be the keynote speaker as well as a workshop facilitator. I was both honoured and terrified to accept her offer.

It took me a long time to settle on a topic and finally I decided on sharing the lessons I had picked up along the way as a mother to Meredith. It was called “Ten Pearls of Wisdom~ a decade of lessons learned mothering my child with medical fragility.” That afternoon I gave a workshop on “Cultivating Resilience for the Long Haul” touching on the things that have helped me to go from new motherhood to where I am now, almost eleven years later, intact, happy and healthy.

This was my first time giving a keynote and so I really didn’t know what to expect.  It was all very surreal. Writing this speech required a trip back in time to when I was a new mother.  I never would have imagined back in December of 2003, that almost eleven years later, I would be sharing my hard earned wisdom with a room full of parents, children and adults living with cerebral palsy and professionals. My only hope was that something I said would resonate with my audience and from the feedback that I received, I am confident that I succeeded in what I set out to do.

There were many highlights of this trip. I was thrilled to meet a fellow Life-Cycle Celebrant, Peggy Acott,  for dinner on our first night in Portland. Peggy helped me immensely in gathering the items I needed for my keynote and my workshop.  It would have been very difficult travelling with a large glass vase, 200 “pearls” and a live bean plant. Meeting Peggy (and her partner, Sue) was wonderful as we have been “friends” on Facebook for some time. Shout out to Peggy for your kind spirit and your assistance!

Friday brought the conference and there was such anticipation on my part that I awoke ready to roll at 2:30am. With seven hours until show time, I texted with my husband, did yoga, ate breakfast and went over my notes about fifty times before finally being able to head downstairs to the conference area.  That evening, we gathered in the lounge for much needed drinks and soon others joined our table. It was such a pleasure to meet other families who could easily relate to me. I loved hearing from the mothers of children who were now 20 years and older and I loved giving hugs to the mothers who were just starting out on this journey (blog post coming up on this topic!).


Left to Right: Marie Blanchard, me and Susan Cushman (Marie’s mother)

On Saturday, my dad and I took a road trip to the Oregon coast . Our first destination was Cannon Beach which was incredible. Unfortunately, the weather was wicked and we headed back to Portland halfway to our final destination of Lincoln City as high winds and thick fog were making the journey less than pleasurable. I am definitely going to return to the west coast and drive from Vancouver, BC to San Francisco, CA some day. It was like nothing I had ever seen.


Before I knew it, Sunday arrived and it was time to head home. I was relieved, exhausted and warmed by the kind and memorable people I met in Portland. I hope to return one day when life allows. I was excited to get home to my family. Tim welcomed me with flowers and Meredith welcomed me with a cold shoulder and indifference. It didn’t take long for some snuggles to warm her up and for her to forgive me for leaving her for five days.

Since returning, I have been frantically finishing up my book among many other commitments. I have just one chapter to finish plus the introduction and acknowledgements. Finally, after three years, the “What I Would Tell You” book will be  set free. There will be lots of changes coming up in the months ahead with a new website and of course, a new book for sale.

Thank you, Susan (Cushman) and the staff/ volunteers and families of United Cerebral Palsy of Oregon and SW Washington for making this Canadian mother feel so welcome in your beautiful city!



Sep 8 14

Waiting to Exhale Revisted

by julie

*originally posted January 2013 but I am having a throwback week of posts. Enjoy!*

I held my breath in that moment when you were born.

I held my breath as I gently but firmly ordered you to breathe, to stay here with us as I flicked the soles of your feet and the Midwife administered oxygen.

I held my breath that morning five days later as the words carefully tumbled out of the Neurologist’s mouth……”As I suspected, your daughter has suffered a serious brain injury.”

I held my breath every single night that we had to leave you in the NICU and go home to our empty house.

I held my breath each time you were poked or prodded or crammed into  uncomfortable positions for x-rays.

I held my breath when the Pediatrician told us that at only six weeks they would be drilling a hole into your abdomen for a feeding tube. I held my breath as they wheeled you down the hall for that first surgery and for every surgery after that.

I held my breath as we left the hospital to bring you home for good. How would we ever know what to do with you all on our own?

I held my breath each and every time you violently retched from the severe reflux that plagued you……….up to 15 times in 24 hours. Each time I held my breath urging you to catch yours.

I held my breath during every follow-up appointment for fear that there would be more bad news. Good news are hard to come by when your brain is so complex.

I held my breath the first time you stopped breathing and we called 911 and waited that long wait for the ambulance to arrive. I held my breath during the bumpy ride to the ER and I held it again as we waited for you to come back to us. You did then and you did the other six times you stopped breathing.

I held my breath when we were told your life would be short and I held it again as we were given a cheerful tour of the Palliative Care Home for Children.

I held my breath each time a new professional entered our lives. Sometimes I held my breath due to the exhaustion of explaining everything for the 250th time and sometimes I held my breath to keep myself from wringing someone’s neck.

I held my breath every single time you screamed out in pain and anguish from things most people take for granted like pooping and eating. I held my breath because I knew that if I didn’t, I would be flailing on the floor screaming from my heart breaking over and over to witness you in pain.

I held my breath every single time I held you in my arms for 8+ years and the arching and constant thrashing about would force that one rib of mine to pop out of place.

I held my breath when we made the very difficult decision that we would not be having more children. I was certain that if I fully faced the reality of that decision that I would shatter into a bazillion tiny fragments and so I held my breath instead.

I held my breath through every festive holiday and event like Christmas and Hallowe’en knowing that you could never fully “get” what they were all about.

I held my breath as I lay in my bed and listened to see if the nurse was getting to you when you retched or cried in the night.

I held my breath as I lifted you while you spasm-ed although what I really wanted to do was slam my fist through a wall.  Holding my breath kept the rage at bay.

I held my breath to hold back the tears. Oftentimes it was not possible to shed them. And, Beloved, I couldn’t bear to burden you with your mama’s tears plopping on the top of your head.

I have held my breath too many times to count over the last nine years.

And then 20 months ago, after a routine run up a flight of stairs, it was as though the breath was knocked out of me permanently. Tests after tests including those to make sure my lungs and my heart were working well, showed nothing was wrong although I was certain they would find that my heart was indeed, broken.  I knew deeply that somehow along the way I had forgotten how to breathe. And I didn’t know how to go about remembering.

A chance meeting with a professional vocal coach last week has set me free. She knew from the pitch and tone of my voice that I was all mixed up.  She said, “Take a deep breath.” And I did……I expanded and filled my chest up like a rooster in the morning.  And then she said, “You are holding your breath, my dear. Your vocal chords aren’t getting the air that they need. You are breathing up in your chest instead of deep into your belly. You are neglecting to use the largest bottom portion of your lungs.”   Therein lay the problem. I had forgotten how to breathe and she reminded me. Within twenty-four hours, I felt free and open and r-e-l-a-x-e-d.

Our bodies can handle so much before they shut down. I was holding so much more than just my breath. Remarkably, the body responds almost immediately when the path of least resistance is presented.

It is my time to exhale.

Sep 4 14

What I See

by julie

So many look at you and see your limitations and your medical fragility. Some want to look but turn away not wanting to appear rude. Others look too long and I refrain from telling them to “Eff off.” To the majority of onlookers, you are a child with disabilities; a “poor little girl” and a “very sad situation.”

Sometimes I wish they could see what I see. I don’t blame them for their limitations because before I got to know you, I, too, saw a baby that was disabled and sick and I could barely see anything else through my angry tears. As time passed, my grand wishes for you dwindled until the only thing that really mattered was that you lived one more day. That was all. The dreams I once had for you were nothing short of miracles: walking, talking, eating orally despite what our seasoned neurologist predicted. But all of those dreams slipped away with the months and then years that passed.

But as the dreams and yearnings vapourized, something even more magical took their place. By letting go of the things I wished you could do and be, I made room for seeing you as you are. As you grew, so did my perceptions of how things should be. In fact, after some time, the word “should” no longer had a place in my vocabulary. Eventually, I no longer compared you to others because I finally saw you for who you were.


I have the privilege of seeing past all of the things that everyone else can’t help but see. Instead, I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. Through your eyes, I connect with your spirit and I know that you ‘get’ so much more than we know. Your body may have you trapped unable to run and dance and skip and twirl, but when I hold you in my arms and you look right into my eyes, I see YOU~ your essence and your pureness and that magnificent light that each one of us embodies.

I no longer have expectations like I used to. We have learned to just go with it; no longer burdened by developmental milestones, shattered dreams, broken hearts. My only wish now is that everyone else could really see you the way I do.