The day my heart broke!

This post is probably the most difficult for me to write so far because it brings back the memories of the emotions I felt on this particular day. It was the day that my heart broke.

Before I talk about this particular day though, let me bring you up to speed on why this day had even come about.

I had received an appointment for the 11th of January to attend the Early Intervention Services where Kal-el and I would meet with Noleen, the Occupational Therapist, and Laura, the Speech Therapist. The Early Intervention Team are a separate entity from the Primary Care centre although they also are a part of the HSE. The difference with being involved with the Early Intervention Team is that they are exactly that; a TEAM. All of the therapists work together in the same building. They meet weekly to discuss the children under their care and can decide together what plans to put in place for each individual child. Their aim is always to be able to help a child so that they no longer need to be involved with the team. To be accepted onto the team, a child must be 6 years old or under and display difficulty in their ability to function successfully across a variety of environments.

I don't really remember how I felt on the morning of the assessment. I think I can sometimes tend to block out feelings, concerns and worries at these times and just go through the motions. I do remember wondering how cooperative Kal-el would be, but that's a concern any parent would have when taking their young child anywhere that will involve them following somebody else's instructions. When we arrived at the Early Intervention centre (which is literally a 2 minute drive from our home), Kal-el immediately took an interest in the doors. No surprise there. He stood in the waiting area fixated on the two sets of double doors and one single door, eagerly anticipating them opening and closing as people came and went. It wasn't long before Noleen came to the waiting area to bring us into a large brightly lit room. In the centre of the room was a table and chairs and on one side of the room were various toys and other activities. I sat at the table with Noleen as she went through pages of questions, whilst Laura "played" with Kal-el. Of course I kept my eye on what was happening. Although he looked several times at the door, he seemed to engage well with Laura and at least attempted most things that he was asked to do. After some time Noleen and Laura switched places and I was asked another few pages of questions. They seemed pleased that I was so tuned in to Kal-el because I was able to answer the questions so easily. I just felt that they were all questions I'd been asked before at our developmental check-ups, but hey I wasn't going to deny the "good parent" compliment. We all need those every now and then don't we? We can be very good at beating ourselves up with how badly we parent that it can be a real confidence booster when someone tells you that you're doing at least ONE thing right! They made some really lovely comments about Kal-el too. About how gentle he is and how polite he is and that he is a really lovely child. All they had to do now was discuss with each other first and then the rest of the team and would meet with me the following week to talk with me about their conclusions to the assessment.

Needless to say I left there in good spirits. Kal-el had done very well from what I could see and I felt that I had done very well too! Bonus!

A week later it was time to go back to the Early Assessment Team for my feedback meeting. It was now "that particular day". Again, I hadn't really thought too much about this appointment. I felt that everything had gone really well and that they would probably point out a couple of sensory issues but be happy enough to leave him be. I had to attend without Kal-el this time so my Mum came to the house to mind him and Lexi too. As I was busy getting ready I remember having a thought along the lines of: "What will you do if you hear something that makes you get upset? Should you bring a tissue?". What a strange thought! I quickly dismissed it. I just told myself I would have to keep it together and almost instantly forgot about the idea of being upset. I didn't have any need to think that way!

I arrived for my appointment early, as I tend to do, and waited as Laura and Noleen finished up their lunch break. As I sat in the waiting room I decided that I was going to voice-record the feedback meeting simply because I knew that Derek would want to know what was said and because I never have the patience to tell him everything. I really just like to give a one sentence summary of things instead of going into all of the detail. I set my phone to record and within moments I was called in for the meeting. It took place in the same large room as the assessment although the toys were no longer there. I remember immediately spotting a box of tissues that had not been in the room the last time. I guess I really should have realised their purpose.

The girls warmly welcomed me. (I call them girls because in my eyes they are so very young that I even questioned their ability to be therapists of any sort based on their age. Then I remembered that I'm 40 and probably seem old to them and that thinking that they were too young to be professional in this area was the sign of someone who is getting OLD!). As I took my seat they presented me with a ten-page report and explained that they would go through it with me. "I suppose you'd like us to get straight to the point and let you know our decision?". Well yes, I guess so. I'm not one for beating around the bush so let's not waste each others time. "Sharon, we've decided to accept Kal-el into Early Intervention...................."

.....WE'VE DECIDED TO ACCEPT KAL-EL.....

"And these are our recommendations: Acceptance onto the Louth Early Intervention Disability Team......"

.....DISABILITY.....

"Waitlist Kal-el for Psychological Assessment including Autism Spectrum Disorder (ASD) assessment and Cognitive Assessment....."

.....PSYCHOLOGICAL.....AUTISM.......

"Waitlist Kal-el for services within the Early Intervention Team including Occupational Therapy, Physiotherapy and Speech and Language Therapy Services......"

.....SO MANY THERAPIES.....

"Request GP to refer to a Paediatrician to out-rule any underlying medical condition that may be attributing to Kal-el's presentation....."

.....MEDICAL CONDITION.....

"Invite parents to introduction to service talk. Refer Kal-el to Public Health Nurse to offer advice regarding toileting and sleep. Waitlist for sleep workshop. Advise parents to enrol Kal-el in pre-school prior to September to provide him with opportunities to socially interact with peers."

.....PLEASE STOP TALKING NOW.....

I think it was around this point that I could no longer hold it together and gladly took hold of the box of tissues. This was such a huge amount of information and all we had read was the recommendations part of the report which is only half a page long.

Why so many therapies? What kind of medical condition? How are we going to get through all of these appointments? What are you going to find? How will my baby cope? What is my baby's life going to be like? Will he be ok? Will I always have to take care of him? What does all of this mean? Why couldn't you just tell me that there was not enough wrong with him to accept him?

These were some of the questions that spun around in my head. But I didn't speak. I cried. And apologised for crying.

"I have always known there was something. But it's different when someone confirms it."

That is all I could manage to eventually say as the tears fell from my eyes.

The girls read through the rest of the report with me which explained what they had observed the previous week. It really was just as well that I had decided to record the meeting because I had pretty much tuned out. I just wanted this meeting to be over. I wanted to get out. I don't know how many more times I broke down during the rest of the hour-long meeting. Listening to the language that they used to describe all of the things they thought were wrong with my son at times just made me feel angry or sad or both.

That's my gentle, sweet, loving, intelligent little boy you're talking about! So what if he looks at doors? So what if he didn't want to play with a doll when you asked him to? What does it matter if he repeated the words "oopsy daisy" after you when you dropped a toy? How ridiculous!

But yet I knew that they had only confirmed what I had always feared. My baby boy was "broken". Something wasn't working "right". He was living in a different "normal" than I was.

And that broke my heart.

What if I could never understand the world according to Kal-el? What if there were times that I just could not help him simply because I didn't know what he needed help with? What if I couldn't be the Mum that he needed me to be when he needed me to be it? What if I'd been harsh on him when he acted up when I sang or read a story or there was loud music but really he couldn't help it? What if we could never have a normal conversation together? What if they found an underlying medical condition? What if that medical condition means he'll die young? What if I lost my son?

The girls explained how we would work together as a team and that they would be in touch soon.

I got into my car and sobbed. Then I remembered I had been recording. I stopped recording. I sobbed some more. I needed to pull myself together. I needed to get home to my children. I needed to let them know that everything was ok, even if I didn't really believe it myself at that time. I pulled up in my driveway 2 minutes later. I couldn't get out. I sat and cried again. But I had to get a grip. I couldn't sit in the driveway all day. I got out of the car and walked into the house. I headed straight for the kitchen because I knew that my Mum, Kal-el and Lexi were in the living room. I cried in the kitchen. I cried for my little superhero. I cried because it wasn't fair on him. I cried because someone so gentle shouldn't have to suffer. I stopped crying.

I walked into the living room and said hello to my children playing on the floor. My mum went to speak but I raised my hand to stop her. I couldn't look at her. I didn't want to cry in front of the children. My mum understood. She waited. But she's my mum. She wants to make sure I'm ok just like I want to make sure my little superhero is ok.

She told me that she knew I would be upset after this meeting. She pictured it in her mind.....more than once. She understood that God was preparing her so that she could comfort me. You see even though I am a Christian who believes that God can do anything, I am also a human with emotions and concerns. Often when we are in the midst of something like receiving bad news or a bad report, it takes time to let everything sink in and get over the emotion of it all before we can think about what to do next. Right there and then I was just trying to process it all. But God had already prepared comfort for me. He told my Mum;

"Sharon knows Me"

"Kal-el will be fine"

"Lexi was perfect timing - she'll keep Sharon busy"

.....KAL-EL WILL BE FINE.....

.....KAL-EL WILL BE FINE.....

I took those words of comfort and sealed them in my broken heart knowing that over time those words would heal it.

Later that evening when Derek was home from work and settled, he asked about the meeting. "Here, listen to this. I recorded it all for you". I handed him the phone and earphones. He listened to it. He didn't say too much.

"Kal-el will be fine", I reassured him.

That night as I slept with my little superheroes in the bed beside me, my husband knelt by my side. I woke. He cried. I guess his heart had broken that day too. We just held each other. We were in this together.