A Mother's Story

It's Ali here this time. I've been the editor of the posts up until now.  I have many thoughts that have been flooding my brain for the past 3+ days since I recently found out that my close friend in Australia is on a journey very similar to ours.  She is in the very early stages of dealing with the grief of the news that her 4th child has special needs. Her baby girl is only 1 month but the MRI has shown significant brain damage.  Cerebral palsy is a likely diagnosis when development is later assessed among other things that the doctors say are likely including intellectual difficulty, hearing and vision. She was 38 weeks pregnant when she needed to be induced with no complications throughout the pregnancy until the end when she couldn't feel the baby move on her OB check up - 38 weeks! That is not a premature child. That baby is full term. Her 3 older children were healthy, full term, no complication pregnancies.  It can happen to anyone.

My heart just aches.  Like, I actually feel heaviness in my body thinking of the burden of this news. Remembering how it felt with James in the early days of knowing - it's a grief that is hard to explain. Understandably, she is absolutely heartbroken (she has given me permission to share what I did above).

It is not something that I have made public until now, but hearing her pain has encouraged me to share not only with her but in this platform too.  The urgent and unexpected arrival of James' birth 12 weeks early on August 1st of 2016 led me to experience PTSD, postpartum depression and anxiety.  

I struggled alongside James as he struggled through the NICU days and the days of learning about the challenges that lay ahead of him.  It was almost as if we were one person.  We battled the many appointments and times of physiotherapy together.  I have had ups and downs on my journey just as James has had on his. I tried so hard to pretend to be ok, or at least functional, but nothing about me was feeling ok. I had insomnia. I cried often. And I thought about James' arrival daily. Now I must paint a picture of what life looked like when we brought James home:

Not only was I dealing with the traumatic events of August 1st, but I had news of his probable diagnosis of cerebral palsy to handle along with an incredibly colicky baby. James constantly cried. He would cry when I fed him, cry afterwards, and cry through the next round of feeding.  It felt like I was being yelled at.  He was so hard to calm down which meant that he wouldn't nap - a crying baby can't nap at the same time after all. So, I dragged my exhausted self outside to walk him in the stroller to sleep.  Thankfully it was a mild October and November otherwise this would not have been possible (December certainly was a different story).  I did this 2-3 times in the day just so he would stop crying and sleep. This seemed to be the only way. I would've kept walking so he could sleep longer but I was too physically tired to walk any further, so I had to go home - and repeat feeding, and this entire process. For 24 hours of the day!! Time meant nothing to me - 2am felt the same as 10am, 3pm, 11pm. And James needed me at all times. Never could I put him down. It wasn't unheard of for me to stay in my PJs all day, not shower, barely go to the bathroom, nevermind eat because James just lost his mind. James had intense reflux and he not only spit up an obscene amount of milk/formula, he would be so incredibly upset. He was so gassy and his stomach was causing so many problems. I so badly wanted to help him with no idea how. Medications and specialized formula wasn't working. I also had to stop breastfeeding in this time because James was not taking to it well - both the act of feeding itself and potentially the milk affected his stomach too. We weren't sure exactly.  I couldn't keep up to the demands of pumping, supplementing with formula and handling a colicky child, so I had to stop.  Stopping breastfeeding took a huge toll on me physically as well as emotionally. I cried so much. Learning the switch to bottle feeding was a hard one for me, particularly with a premature child that you have been trained in the NICU to fear many things - the risk of getting sick (Respiratory Syncytial Virus or RSV in particular which James had monthly vaccinations for) being the biggest one. Bottling is quite the procedure and very overwhelming to an already stressed out mother. It took me time to figure out how to do it well.  Even things such as buying enough bottles. Money conscious me didn't buy enough bottles initially. This is important when you have a baby who feeds regularly and finding time to clean and sterilize those bottles is tough. Twelve bottles eventually was the ideal number. I also had to buy a sterilizer for the bottles (after a long period of time of stressing that they weren't clean enough). This was a system I knew I could handle as it fit 6 bottles so I could have 6 bottles ready and then rotate to the 6 ready in the sterilizer. This took me a LONG time to figure out. With James being so colicky, I was so worried that the bottles were not clean enough and that I was some how causing him to be upset. The specialized type of formula our paedeatrician recommended was not user friendly at all to prepare. Typical formula has a scoop that usually measures as 1 scoop per 2 ounces of water which is an easy way to measure out quantities. The Puramino brand was not this way. It had very specific quantities of water and not a clear 1 scoop per easily measured amount of water. To illustrate, here's what their charts look like online.  No other formulas show a "final volume" amount like this.

So here I am trying to measure out very specific quantities of water, scared that I was making it either too diluted or not diluted enough. This was an anxiety that was very intense. I so wanted to help my child not feel the way he was feeling and I was trying everything in my power that it not be something that I was doing with the formula, sterilization and cleaning procedure of bottles. Switching months later to Goodstart (after seeing a GI specialist) with a very clear formula measurement was good for my mental health.

The circumstances I share above give you an idea of why I was depressed. I felt like a bad mother and I even questioned if I should have had a child at all.  I was told so often "you're doing such a good job", and in many ways I knew that too but that's how you know you're depressed - you can know something to be true but not feel it in your heart even though you want to.  I so wanted to bounce out of it, to take each day like I could tackle it but I was struggling big time. I remember being at a Christmas party (I forced myself to go so wanting not to feel the way I did and thinking I need to get out of the house). It turned out to be a bad decision because all it did was make me feel exposed - expose the fact that I was so far from ok and that night I knew that I needed to search out some help. I felt like I was being stared at. I remember being told at that party like I was visibly tense and so not relaxed. Guess my feelings could not be hidden.  I had no interest in celebrating Christmas that year. I could have easily skipped the holiday all together but I forced myself to other holiday events, mostly because I knew people wanted to see James as we hadn't been out at all with him until that point.

I recognize this is an incredibly sad and dreary post. As a true Canadian, I'd say "sorry" but no, not sorry, this is real life folks. I'm still on this journey with depression. I had a very hard time coping when Mike went back to work in November after a few months of doing the NICU life and first month at home together. My husband knew this and was very worried about me.  A teacher's schedule barely allows for a text during the day let alone a phone call, but he made sure to call and check in on me in the quick spare moments he could during recess or lunch time. Therapy was a must for me. I needed a place to talk about these things. It was something I craved. Most people didn't want to bring up the news for fear of upsetting me yet I was upset that people seemed to brush away the pain and not talk about the hard stuff. I'm ok and will always be ok with talking about it. Journaling has also been a huge help to me. The change that your life has to face when you have a special needs child is intense. And when talking to my friend about her very new and raw experience, I've been reminded of the grief that you have to endure. You grieve the loss of what you thought parenthood would be like, your expectations (we all have them). You grieve the trials set out for your child. No parent wishes for this. You grieve when you see other children of his age doing things so easily that are incredibly difficult or not yet possible.  You grieve because there was nothing in your control or the control of your helpless child in your womb to not enter the world when he did.  All of these emotions you're dealing with when very well meaning people around you want you to not feel this way, want you to appreciate the blessing, the true gift that new life brings, the miracle, etc - all of this is true but when you're feeling the way you do and you hear all of that, you feel that much more guilty that you don't feel that way or at least those emotions do not surpass the ache you feel in your heart.

It's also a difficult road as you talk with other Christians - many well meaning Christians tend to focus on hope in a way that can feel like the pain is being trivialized.  Whether they realize it or not, boiling all of the struggle down to a feeling of hopefulness can come across as trying to ignore/ push away the sadness, grief, anger and frustration. I had a hard time with the word hope. I was hopeful; hopeful that God will one day make all things new; hopeful that He loves us; hopeful that Jesus meets me in my sadness. Hopeful does not mean that sadness can and should not be present. Hopeful does not have to mean happy. I've had to discover that.

If you're able to see the complexity in life and empathize in the raw unfairness of it all, it is such a service to those who are grieving.

I hear you saying, "I wish I had known. I could've helped." As much as I appreciate that, and truly value the village of people around me who care so deeply for myself and my family, I couldn't use your help at that time.  I needed to go through what I did (and really continue to do so in many ways) - to "walk the grief journey" as my Mum would say in her counselling practice.

Once the marathon has begun, you have to let it run it's course.  If you deny the race you're on or cut it short by trying to fix it, you won't run as far as you could have.  It's better to face the grief, wrestle with it in your own way, experience what the situation requires you to experience so that you can pull from it and become resilient (resiliency will be needed for the other marathons to come).

There is a verse written in calligraphy on wood that hangs on our wall in the hallway that my cousin Julia made for Mike and I as a wedding gift.  It has a whole new meaning to my family now.  It is the Apostle Paul encouraging the church in Corinth that

"Love bears all things, believes all things, hopes all things, endures all things" (1 Corinthians 13:7).  A verse typically said at weddings, I now resonate more with as a mantra for my family.

Sick Kids Family

On November 10th, the Wilson family officially became a family of four.  Shae arrived quickly on scene (an hour delivery) and has been catching up to James ever since.  She is both beautiful and strong - a perfect addition to our little clan.

Shae has been coming along with us to many of James' appointments at ABM, Grandview and a variety of other medical appointments.  She soon decided that she would like in on the medical attention as well. Shae developed an infantile hemangioma (also known as a strawberry birthmark) on her right eyelid about 6 weeks after she was born.  So, we took her in to see an ophthalmologist who quickly referred us to Sick Kids Hospital.  We were encouraged not to panic, as this was an issue that is solvable with medication.  The concern was that the hemangioma, if left untreated, might affect Shae's vision. Her eyes were checked and there's no concerns.

So, we didn't panic, but set everything in motion for the Sick Kids follow through.  Ali and I were congratulated by the ophthalmologist on our flexibility about the situation.  This wasn't our first rodeo.

After our consult at Sick Kids, Ali and I tragically laughed with each other about the result.  Shae will be fine with an oral medication.  But, over the next year, we have to make 14 trips into Sick Kids Hospital for Shae as they adjust her medication and monitor her response to it.  She just had to join the party!  Officially a Sick Kids family, we decided to buy the Sick Kids VS shirts and support the campaign.

This was the best shot we could get!

Shae's interested in the non-milk substance entering her mouth!

Anat Baniel Method - part 2

Some holiday fun:

Family Christmas 2017

James jumping around with cousin Aurora:

ABM part 2: "A moving child is a learning child"

After a wonderful christmas break of visiting family and eating some amazing food, James was back in action ready for his first week of intensives (2 sessions a day for a week) beginning the second week of January.  It took some careful consideration to plan out what the two sessions would look like for James factoring in his two naps, driving time, and a quick lunch in between sessions for him but he quickly adjusted to the changes.  It is important to have James in his "sweet spot" for attentiveness to maximize his learning.

As you can see, James really enjoys working with Judy, and Judy seems to be enjoying herself as well.  She has a calming approach that really connects with him.

One of the views that we have been encouraged to avoid with James while participating with Judy in the ABM method is that you can't rely on only showing him how to learn.  You can't rely on repetition in movement, strengthening of muscles, the typical "drill and kill" kind of approach that comes so naturally for us all when you attempt at helping a developing child.  The easiest thing to do is to model "do it this way".  We should guard against the expectation that "I will show you, and you will repeat it".  He needs to figure out his own way about things.

Instead, she has been encouraging us that we simply provide the space for him to learn.  Meaning that you allow him to connect the dots on his own as much as possible.  A deeper and more integrated learning occurs when he has to figure it out on his own.  The highest form of thinking occurs even in infants - problem solving.  Essentially, a problem solving approach puts the reward within the act of learning itself instead of accomplishing the specific required task.  He can discover, explore, fail, try, observe the environment around him and make adjustments on his own.  The more we encourage this, the more James becomes independent.  Here is an example: say he rolls onto an object or toy and all of a sudden he feels uncomfortable.  Instead of removing it from underneath him, allow him to problem solve on his own.  Leave it and see what he does.  Provide the space for the learning to happen.  He can choose a number of options that are available to him.  He can stop rolling, he can roll away and try to grab it again, he can discover the importance of pivoting, he can vocalize for help etc.  All of these options are more helpful to James then simply moving the object out of the way for him before he even reacts.  He can develop his sense of discovery while flooding his brain with a variety of new information.

James has countless opportunities while playing on a mat to try and problem solve around the spasticity.  This isn't an easy task for him though.  It involves reworking around the default setting of spasticity and stiffness.

As we encourage flexibility, creativity, and a good dose of silliness at times the options become more open to him.  At this stage our task as parents is to protect his sense of self discovery, his exploration, his curiosity.  We can create situations when playing where he has to do something such as reach out, to move in a different way etc.

The fine balance we have to tread is to keep the play away from the realm of "too difficult".  You can put a 6th grader in a university class and all they will learn is that education is boring, too hard and they leave feeling defeated.  But the nice thing is, James will always tell me when things are too hard.  His body will tell me and his voice will tell me :)  James did so well last week at his intensive sessions.

Practicing bracing, balance, and weight shifting on a couch:

Exploring feeling the ground with his feet:

James taking some of his first attempts moving forward:

Acceptance and Expecting the Miraculous:

A persistent internal balancing act that Ali and I face is to live the day to day amidst the two forces of acceptance of what is, and to allow yourself to expect miracles to happen.  Both are needed, and valuable. They are both a gift from God.

Acceptance allows for reality to be faced.  It can give you a sense of grounding and a sound mind to guide your day to day decisions.  Knowing the limitations and boundaries of what is possible helps you to plan accordingly.

For us, expecting miracles to happen means that we are trusting God with the future.  We only live one day at a time, and what is time to God?   We put faith in James and his ability to problem solve around the spasticity; we put faith in the ABM therapy and other therapies to bring him further in his development; we put faith in our time, effort and focus with James as having a positive impact.  These are all rational things to put our faith in. To expect the miraculous is another story altogether though.  We live with a hope that God is present and is listening.

We don't always seem to balance these two forces effectively, but they are always at play in some form or another.

At Home:

The next two weeks we'll be applying what we've learned from the intensive sessions at home and then we will be back again in February for another intensive week with Judy.

Blast offs around the house:

Rolling away: