Category / Parenting a Special Needs Child

by Julie

I Wonder

Jack has been wanting to watch the movie ‘Wonder’. We read the book together years ago. Bedtime reading was a regular routine of ours after I had Kate settled and into bed. It was a time for me to have time with Jack. I loved reading as a child, I loved reading to my kids.

If you’ve seen the movie ‘Wonder’ or read the book, you’ll know all about the main character Auggie who had Treacher Collins Syndrome. I have views on the casting for this movie, a story about inclusiveness, the judging of others, compassion for one another, where the lead character is a ‘typical’ child who sat in a makeup chair for several hours a day. Jacob Tremblay, the actor who plays Auggie Pullman, does an amazing job – but I ‘wonder’ if a child with Treacher Collins Syndrome might also have been equally amazing.

This was not the point of this post – but something I wanted to share.

The point of this post is the secondary story in the movie, the story of Auggie’s sister ‘Via’. She is an incredible big sister by all accounts. A champion of Auggie, a confidante, a cheerleader – she’s stoic and she knows that the needs of her brother supersede hers. He has greater needs, that are often more immediate. It’s just that simple. And this affects Via deeply, particularly when she is going through her own teenage issues and has that basic need of time and attention from her parents. Her parents are distracted and they are simply not available to Via. As you watch Via try to cope on her own, if you are a parent who understands that dynamic of caring for a medically fragile or complex child, your heart breaks for her with the knowing.

As ‘Via’ tells the story from her perspective, my eyes welled with tears. “Is this how Jack felt”? He was three when Kate was born and toddlers typically take a back seat to their infant siblings out of short term necessity, but often the balance is righted again eventually. That never really happened for us, or Jack. Kate’s health, mini-crises, big crises, changes in her needs, were all consuming.

Jack had access to many things, he had friends, I arranged playdates, he played sports…but it was different. The expectations around independence were different. I was often gone unexpectedly with Kate to the hospital – sometimes leaving for the ED in the middle of night. I was there with Kate over his birthday and Hallowe’en… Mother’s Day. Special days when that connection with your kids is so fundamental. Jack had to help a lot more than would be typical. He did a lot of the work of a caregiver to support me in helping with his sister. He understood this and he never questioned. It was normal to him, and as he grew older he took on more and more responsibility – often unasked. I also don’t ever remember it being an issue, but now I wonder if it was having an impact on Jack that I wasn’t aware of – or didn’t have the time or energy to attend to.

I know I am not the only one in this. It’s a common worry – a valid one – of many families with medically complex kids in their lives.

Our family settled into a life of revolving around Kate. She took up so much space in our lives. It was out of necessity. To take a line from Wonder, she was our sun and we were planets orbiting around her. 

Was I there for Jack? Was Jack a Subplot?

I’m not sure. I think I was. At the really important times, but did I pay careful attention, did I miss critical points to support him?

Recently we attended an event in Kate’s honour as a family. The boys did not want to be there – especially Jack. I thought it was important (I still do) that we were there together. But now I wonder if Jack needs to spend that time still orbiting his sister and her memory?

There has certainly been a lot of attention on Jack in the past while, but it has taken time. I was not a very functional mom for some time after Kate’s death. Jack is still vigilant of my energy, my sadness, my ability to get through the day. He watches his dad too. I know it, and it saddens me that this boy is still accommodating others so much. I am trying to teach him now that he can put himself first, he can advocate for himself, and that we are there for him. We are fully present. He is our priority.

Wonder has many messages. Powerful ones about what it means to be a friend, and what it means to have true strength. Auggie is the hero of the story, but when I watched it my eyes were on Via.

Julie

 

by Julie

12 months, 55 days later

IMG_5478

Wow. What a really bad selfie. Why on earth would I post this? I am sharing it because I want you to know what devastation, loss, intense grief and sadness look like. This is me longing for my daughter. Wishing her back. It is a picture important to share because I am not interested in hiding how I feel. It is raw, in the moment and unedited – just like this blog post.

What is it about grief, sadness, extreme loss…depression (gasp!) that people seem to shy away from? Why does it seem so hard for many of us to wrap our arms around those people and show great patience, compassion, and support (beyond just texting about it). I think it is because it takes a lot of energy and time. Both very limited commodities in our very busy lives. It also takes a great deal of compassion.

I am grateful. Grateful because I have that support from very key people in my life. I am getting the space and time I need. I have had the attention and people following up when I have gone ‘quiet’. The friends who know the right thing to say, and when to say it. The friends who continue to reach out, even when I don’t answer, or repeatedly say ‘no’. The friends who sit with me and listen.

It is powerful, and I am grateful.

Kate’s loss rocked my world in many ways. I functioned in a state of shock for many months after. I couldn’t process that she was gone. Honestly, I still feel like she’ll come back, or I can bring her back. Like I am waiting for her.

The incredible amount of time, physical energy, cognitive energy, and emotional energy it took to parent Kate and take care of her left an incredible vacuous void in my life. The routine and relationships we had developed with her medical teams and our children’s hospital were wiped from our calendar. The relationships with therapists, schools, pharmacists, caregivers, nurses, personal support workers ended abruptly. The regular, ongoing advocacy and coordination of care to ensure this complicated little girl got the help she needed to live a full life had gone quiet. The intense medical needs of the last few months of her life just stopped.

I was exhausted from 8 years of intense caregiving to a happy, active little girl who was chronically unwell and medically complex, but when I closed my eyes I couldn’t sleep. Extreme exhaustion and sleep deprivation had put me into a state of insomnia. My body couldn’t adjust to the adrenal overload high I had been riding to simply keep me functioning day to day. My mind couldn’t settle from the trauma of the last 9 months of Kate’s life – what she had endured, and what we had experienced.

And with all this, I miss my daughter. The little girl I brought into this world. I love her and would do anything for her. I wanted so much for her. I miss her smell, her soft hair, the laughter in her eyes, her giggle, her soft hands, her hugs, her voice, the feel of her body when I held her. I could go on and on. In my thoughts I do, every moment of every day.

I talk to Kate often, usually she comes to me, and her words bring tears to my eyes. I know she misses me as much as I miss her. I know she left us too soon, because of decisions and under circumstances that I feel could have been different. I know she suffered because those charged with caring for her did not always do their best for her. Those thoughts haunt me. They cycle around in my head and they are constantly present.
It has been an intensely complicated grief. I would need time. A lot of time.

I cry. A lot.
I am slowly regaining my strength. But it has taken an incredible amount of time, and patience. Having the courage to be patient with myself, and understanding that I am forever changed is something I have had to learn, accommodate, assimilate. There are things that I no longer enjoy. There are situations that are uncomfortable and that I now avoid. There are people I have had to forgive, knowing that what they did was not ok. There are some things that are not forgivable.

There are also days that have some laughter, some light. I love being a mom. My children mean the world to me, and the relationship I have with my son Jack is one that I treasure beyond anything else. Time spent outdoors, connecting with this world and myself, running, skiing, cycling, yoga, surfing and more. There are moments when I think of Kate, ‘wouldn’t she love to be doing this’, and they are happy and reflective of her time in this world. There is some light and that is what I work on every day. Moving toward that light and the love, energy, and people that reside there.

I am writing this post today because on this day many of us are talking about mental health. I want to add my story, because story telling is how we share and learn best. This is a truth.

I want other complex care moms (and dads) out there to know I understand. I get it.
I want you to know you can call me. I will listen. I will try to guide you based on my own experience.
I want you to know that you are not alone and there are people who will listen, sit with you, hold your hand. Keep asking until you find that person. You will know them when you find them. They are the helpers, the ones you can lean on, the ones who will come without you even asking.

Don’t try and do this alone. It is too hard.

Thank you to my helpers, the ones who listen and continue to be there for me.

 

Julie 

 

by Julie

“How To Be A Good Guest”

NOTE: We have been home for just over 2 weeks from a close to 7 month hospitalization. This blog post has been sitting in my ‘draft’ since late August. It’s interesting now to read it and reflect on our experience of such a short time ago. I want to say that our family is very grateful to the excellent medical professionals who have taken care of Kate. This is unedited and unrevised. A raw reflection of hospital living.

 

Living in the hospital with your sick child is not something I would wish on my worst enemy.  It is a sad and lonely existence.  It is stressful, exhausting and scary.

You lose all control over your life in hospital: personal space, likes/dislikes, routine, and decision making. You are reminded almost daily that you are not in control, that your autonomy as a parent is no longer. That discussions and decisions about your child, you, and your family will often happen without your presence or input.

And you have no choice. Your child is sick. You need to live this life, sleeping on a small cot, being woken throughout the night because of alarms or lights, physically and emotionally exhausted, separated from home – family and friends, eating what and when you can, limited from going outside or fresh air, living with incredible stress among strangers, all while dealing with incredible stress and heartache.

And you always need to remember to be a gracious guest. Smile. Say Thank You (a lot). Guard your emotions. Accommodate any interruptions of medical staff to your room. Repeat your child’s story endlessly and readily. Expect to meet an endless stream of medical personnel. Try to greet everyone by their title – despite the fact that for months on end they will simply call you ‘mom’. Expect no routine. Be agreeable with waiting all day for 5 minutes with a doctor. And be vigilant about keeping you child safe.

 

Be. A. Gracious. Guest. 

 

Check your emotions at the door – AT ALL TIMES. An almost impossible task given the circumstances you are living, but a clear expectation by those whose ‘house’ you are visiting.

If you are lucky, you’ll work with a medical team who are compassionate, patient, communicative, flexible and transparent. Doctors and nurses who understand your journey and the stress that comes along with it. Professionals who aren’t jaded by working with endless little patients and endless upset and frustrated parents.

Let me warn you. This type of environment and medical team cannot be an expectation. We have been lucky for the most part.

Hospital life is a constant delicate balance about living out a working relationship that includes respect and civility, but in an environment that is created and controlled solely by the medical professionals, and for the parent, under situations of extreme personal stress.

 

House Guest Rules:

  1.  Be Clear About How Long You Will Stay

I don’t want to be here. I would prefer not to be ‘visiting’. I’m sorry, but we have no idea how long we will be staying. I am not in control.

2. No Surprises Please

After living 8 years with a child who suffers from an ultra-rare disease, ‘no surprises’ has definitely been taken off the table. We will surprise you daily. 

3. Choose The Perfect Gift

I will bring you coffee, tea, Timbits, a fruit basket, cookies for the night shift. We are grateful for all that you do for us.

4. House Rules Rules

We will do our best to adjust to your ‘rules’, but we would appreciate some flexibility and compassion about the fact that we are reluctant guests and that some ‘rules’  are not to the benefit of our child. But again, I understand…I am not in control

5. Be Appropriate

I assure you, I am a calm, rationale and appropriate human being 99.9% of the time. I hope you understand that this is an incredibly challenging and difficult time for our family, and I am doing my best to be appropriate. If I am not at all times, I hope you are empathetic and able to be there to support me.

6. Help Out

I will do everything I can to help out. Changing beds, managing my child, helping with meds, holding her down for procedures, interpreting for you and for her etc.

7. Entertain Yourself

Done. An endless supply of stickers, play dough, colouring, puzzles, dolls, toys, crafts to play with. I’ve updated my Netflix subscription as well, and found a few magazines and books to flip through.

8. BYO

If only! An occasional glass of shiraz in a beautiful wine glass shared with a good friend would be so amazing right now.

9. Leave No Trace

Keep our room neat and tidy. Check. We’ll likely leave a trace with you though. Kate is just too adorable to forget. 

10. Give Thanks

We are both grateful and we say thank you every single day.

 

As a patient-mom, I have lived more than my fair share of out-patient, in-patient, short and long term hospitalizations. I understand the medical system and I know how to navigate it – most of the time (it can be difficult and confusing still).

I am a good person, a good mom, and excellent patient advocate. My goal is to keep my daughter safe and well cared for, and I have clear expectations about how that is to be done. It doesn’t always fit with the ‘house rules’ of the medical professional I am working with. So I go back to my “etiquette” and do my best to get done what needs to be done in a collaborative and professional manner. Often times I am relied upon by these same professionals to help them understand my daughter better because of the complexity of her condition. But I am a mom. And I get tired and emotional and scared – and I am not always going to have the patience to say everything in my nice voice. I am not always the perfect “guest”, but I think I come pretty darn close. It comes with working within the imperfect environment of a hospital, and I think needs to be appreciated and understood by everyone involved in the care of a sick child.

 

Julie

 

 

 

 

by Julie

A Few Thoughts About Patience

I am tired of being told to be patient.

I’m pretty sure if I hear the word one more time, being directed at me in a syrupy semi-supportive/patronizing tone with a hint of caution from a person who knows little/nothing about me/Kate/or our story, I might just lose it on the next person I hear it from.

It’s been 5 months, and no one can seem to figure out how to get this GVHD under control. We’ve dealt with an 8 week BMT, a very poorly orchestrated discharge post-BMT, missed diagnosis, extremely stressful medical situations where we went unheard, mistakes were made, and Kate suffered as a result, and now the yo-yo back and forth two steps forward 5 steps back (and three steps sideways) of trying to control for a complication that wasn’t supposed to happen with no end in sight and a changing roster of people in charge of finding the solution to fixing it.

I am tired of being told to be patient. 

I do not feel patient and yet I wake every morning and focus on what needs to get done that day. What do we need to do to get Kate one step closer to home. What craft game story video iPad game sticker activity can we do that day together where I will need to dig deep to be engaged and patient within the four walls of our isolation room. What questions should I be asking? What plan can we make to get Kate better?

I am patient. I have been patient. I am patient because I have no other choice. And neither does Kate.

 

Being told to be patient and that ‘these things can take time’ is like telling a marathon runner that you have moved the finish line. Actually, not moved it, but hidden it and there is no MapQuest, or GPS, or map or even a damn sextant to find the finish line. (You even begin to wonder if the damn finish line even exists). Just keep running until you find it. Oh…and be patient. And that exhaustion and despair and frustration you feel? Just be patient. We have been so close to that finish line too many times.

Who ever coined the phrase ‘good things come to those who wait’ should be taken to an isolation room with an unwell child and locked in…and told to be patient.

pa·tience
/ˈpāSHəns/
noun
1.  the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

 

As of today , it has been 5 months. Kate is up and down. Feeling well for a few days and a glimmer of hope starts to grow that maybe, just maybe our patience has finally borne some fruit – only to be dashed again by the latest set back of loose/liquid green stool, nausea and fatigue. (You know that marathon finish line I mentioned? Think about having it in your sights…finally…only to have someone steal it away and move it again.)

We’ve been patient through the post-BMT phase with trialing 4 different immune suppressive drugs. Five attempts at steroid wean. Endless imaging and tests. Different doctors with different plans. Different nurses with different approaches. And not much has changed.

Kate has been patient.

Everyday is a test of patience amidst our exhaustion and fear and stress and hope for a good outcome.

Patience is wearing thin for both of us.

 

Julie

 

by Julie

Santa Love

Something important – even magical – has happened for Kate. Like any young child, she loves and believes in Santa.

She has spent the past 7 years being terrified of the jolly old elf, but this year the tables are turned. Santa is a regular in our home. We look at picture books about him, we drag around Santa stuffies, we have Santa ornaments and we regularly stalk him at the local malls.

To be honest, we saw the Santa love starting to emerge last Christmas. She watched him from afar, from the safety of holding onto my hand or from her dad’s arms. She was curious of him, she liked to see him and talk about him, but there was no way she was getting close to him, let alone sitting on his knee.

Santa loved has lasted over the much of the past 12 months – in Kate’s world things don’t end just because the ‘season’ is over. We celebrate on an ongoing basis as long as Kate shows interest. We have easily watched Dora’s Christmas Carol, featuring Santa, more than 100 times. (Birthdays and talking about birthday parties lasts a LONG time around here too). But Santa love has gone into overdrive since he started appearing at malls, in holiday decor, at xmas tree farms, and in arts and crafts at school.

He is hands down one of the best markers of Kate’s development. Kate is entering the world of “magical thinking” and pretend play. Suddenly princesses have become important, and playing mommy to her dolls and stuffies, and Santa and loving him and are part of that. Kate’s ability to understand – at some level – the ‘pretend’ of Santa shows a change in her cognition. There is some research that shows understanding ‘pretend’ allows a child to develop greater social understanding, and the ability to understand someone’s else’s perspective and this leads to an increase in social interaction and social play.

For our family, it is the joy of seeing a little girl with so many challenges light up at the sight of a warm and friendly person in a bright red suit at Christmas time. It is the heart-bursting moment of seeing her ‘get it’, and to see her excitement and joy, and knowing that she is her own little person growing at her own pace, but that she can enjoy Santa just as others can.

There have been many Santa moments for us this year – all of them wonderful. The most recent highlight at the Rogers House Christmas Party, Kate asking Santa for what she wants most for Christmas – French Fries.

Kate and Santa 2014

 

Julie