I don’t always have the answer when I should, maybe it is because I am still learning, and always will be as my beautiful little people grow up. There is no “handbook” that tells you the right or the wrong answer to give when the difficult questions come. The questions tumble so easily out of Hailey’s mouth from time to time that I know I should be prepared for them each time, but every time I am caught off guard. I search in the darkness of my mind for the “right” answers, the least painful response to her “wonderings” about Conor and now about Jack.
It was a heartbreaking day the day we had to tell her that baby Jack had Autism, had SPD and now was unable to speak just like her beloved brother Conor. When we found out about Conor having Autism all those years ago, Hailey herself was still a baby. She didn’t or at least we didn’t feel at that time she could fully comprehend what it meant to have Special Needs, what it would mean to her now and as she would grow up to have a little brother who could not speak. I remember her one day as a 3 year old, toddling over and resting her little face on my lap, I was in a way in “mourning” for what I believed at that time would “never be” for Conor with the very recent news of his diagnosis. She said to me at that time “it okay mammy, Conor still here” she was so right. I remember her words jolting me back to reality, making me realize he was still my lovely Conor, still her handsome brother. It was a strange realization that my 3 year old little girl had a better handle on Conor having Special Needs than I did.
I expected the same “matter of fact” response from her when I spoke to her that day after school just a few short months ago about baby Jack having the same conditions as her lovely Conor. Claire, Jack’s Psychologist had been that morning to our house. delivering that devastating news I had so so feared from the moment baby Jack was born. She was so kind with her words and so caring with her time. We already knew at this point that Jack had Autism, SPD and was blatantly now non-verbal yet she took the time to hand us that dreaded life changing piece of paper that tells you in small print that your child will struggle everyday on some level for the rest of his days. I remember thanking her for her time, for coming all this way to give us the Report when many would have just sent it in the post without a second thought. After she left we talked it over and decided we should tell Hailey that afternoon when she came home from school.
I remember my heart beating so fast as I prepared myself to say out loud what I had most feared for so long, I wanted to cry my heart out as I told her but I knew I couldn’t tell her this “news” that way. I had to be strong as I could be, brace my heart so I could help her to make her own heart brave. I had no plan on how I would tell her, I just knew in my heart I HAD to tell her.
Thinking of the look on her face when I uttered those words breaks my heart now all over again. She was heartbroken, devastated,lost. “You HAVE to be joking mammy!, you have to be”, she burst out crying and I remember feeling so taken aback I lost my breath for a few moments. You never ever set out to hurt your own child, to break their heart into a thousand pieces with your own words, but I had to tell her. It seems so silly now but I hoped and wished she would take this devastating news as easy as she had when she was 3 but times had changed and it was obvious now that Conor having Autism had played on her mind much more than we could ever have imagined. She was devastated.
“But I thought God gave you baby Jack to mind me, cause I know I have to mind Conor when I grow up” she cried, my heart was so broken at this stage I don’t even know how I held it together for her. ” Who will mind me now when you and daddy are gone to heaven?” It was too late then, I was crying too and that lump in my throat that I had pushed as far down as I could burst its way out in a stream of tears from my eyes and howls of pain from heart. I held her so tight just then, told her I loved her and that it would be alright because I would make it that way.
Streams of never ending tears fell from her soulful eyes as I told her we loved her and we loved Conor and Jack too, that nothing had changed, Jack was still baby Jack. It occurred to me just then that our roles had reversed from how they had been when Conor was diagnosed, she had tried to comfort me all those years ago and yet here I was doing the same for her now.
The questions kept coming and my heart was ready to start running, away from the very real reality of living with Special Needs what a diagnosis meant for us all. ” You will forget me, I’l be left behind now, you won’t remember me” I tried to appease her and tell her the truth that it would be all alright in the end that Jack was just as he was supposed to be that he may still talk someday.
How I wished at that point I had the answers she needed to help her heal, to help her heart just now as I was breaking it.x Her youth spilled out just as quickly as her words reminding me that she is still a young child herself still learning, still understanding. What seemed to bother her most just then was something we do everyday that I never took any notice of but realized the significance of it now completely for Hailey.
“Jack will have special crisps now as well as Conor” she cried, I was confused at first but then it dawned on me. We always keep things in the house or in the car that will help settle Conor when he is out and about or becomes undone. These “go-to” items range from a bag of his favorite crisps to some of his most favorite dvds to his favorite sensory therapy toys. They are essentially an “emergency” kit to always have on hand when things get totally out of control with Conor and we need something “fast” that will bring him back to us, calm him, center him, help him. We viewed them as “must haves” for him, whereas now I knew Hailey viewed them as favoritism despite the fact she always has treats in the house that are just for her, the fact they were in a press up high held an inexplicable significance for her. I told her that we would make sure she had her “special crisps” in the press from now on as well as Conor and Jack.
She seemed less anxious now, sitting on my lap she peered deeply into my eyes and asked “when do you think will Jack talk”, “when will his Autism go away”. More hard questions and I as always was not prepared enough to give the right answers, but I did my best as I could at that time. I told her that we didn’t know when Jack would talk but he probably would be talking by the time he was ten. The moment I said it my heart started to ache, Jack was almost 2 now so that would mean another 8 years of silence, wishes and hopes possibly dashed as each new birthday signified more than just an extra candle on his cake.
To Hailey it was back to being matter of fact, she piped up ” well that’s okay that is only another 10 years until he can talk again” I didn’t correct her, I couldn’t. My heart was shattered, my voice choked at the very real prospect of never ending years holding on to Hope and keeping my wishes alive as each year would pass and blend into the next waiting and wishing for Conor and baby Jack to someday learn to speak again.
Conor came over with his drinks bottle letting us know in his own way he wanted a drink. Hailey said out loud to Conor ” Conor want juice” , “okay Bubba (her pet name for Conor), Hailey get” , she took him by the hand and off my two gorgeous children went to get some juice.
I do realize that this is not the end of the heartbreak for Hailey, Conor or baby Jack, it is not the end of the very real hard conversations I will have with Hailey Conor and baby Jack as time goes by. But I hope by always being able to “talk” to each other in their own way their bond will continue to deepen as the years go by, their love for each other will give them each strength to face the challenges that I know will come their way as they grow up.
But most of all I hope they will know how deeply I love them, how deeply proud I am of them and should they ever need me, that I will always be there for them.
I may not always have the right answers, I may not always be able to shield them from the pain that reality can bring but I will always be here with them supporting them no matter what the future may bring.x
For my heroes Hailey, Conor and baby Jack, who help to bring a smile to my face everyday and light a fire of courage in my heart to keep going and doing my best always for them.xx
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