Life is normal now

Normal Now

Jack and Conor

They say that “time is a healer” and I think that maybe that is true. If you told me that 12 months ago; I would have cried with the anger, pain and fear I was trying to overcome at that time. Angry that autism had claimed my youngest son now as well as his big brother, pain that I could of done more for him if I had known sooner and fear that I just wasn’t ever going to be able to do enough to help him.

I battle every day still with my conscience, with my heart, with my mind, with the future, with the past. Looking at the calendar this morning I read words I couldn’t fathom; it said “Jack’s Anniversary”.   Maybe it was the lack of tea at that early hour or the never ending nights of no sleep now that both my boys have decided sleep really is for the weak, but I couldn’t remember why or when I had written that.

And then I knew.

This day, 12 months ago, I was finally told that my gorgeous Jack, just like his big brother Conor had regressive autism, had developmental delay, had SPD, had special needs. My heart and my mind broke that day just as easily as it breaks now. I “knew” in my heart for along time before I could admit it to myself, because just sometimes its easier to carry on with the “life” you think you have before its snatched away from you in an instant, again.

That pain I felt on the days I was told of my boy’s diagnosis, there isn’t even a singular word to describe; the howling within your heart and soul as you feel you could quite literally  shatter into a million minuscule pieces  of yourself with the hurt and fear that is trying to escape just as quickly as the anxiety that rises in your mind.

Normal Now

Jack on the night he was born.x

When I think back about 1 year ago to Jack’s diagnosis day, I know that it wasn’t the label of “autism” that broke my heart, it was the struggle I knew he would most likely always now have to face on some level for the rest of his life. In my eyes he is not “less” because of a label of autism that will always follow him much like his shadow, it is and it was the fear of what may lie ahead for him.

In an almost bittersweet way I knew he and I would mange this new journey together much easier than I had the “first” time because I had been here before but it also made it all the more heart breaking as I have struggled, I have cried my eyes out these last 6 years trying to do my best for Conor. Now I realized I would most likely always have to make “life” decisions for both my sons on some level for the rest of their days. The weight of responsibility is what draws my fears at night when I stare up at the ceiling imagining what could have been if “things” had been different for both my boys.

Of course you always “hope” for the “best” and do as much as you can to “help” them to be their “best”, the most “independent” they can be, but you also have to breath in the reality, the gravity of what weighs heavy now on your heart. Maybe there won’t be all you “dreamed” of, for them, when you found out you were having “boys” when you were pregnant. Maybe they may never leave home, maybe they will never find love, maybe they may never have children of their own, maybe.

Normal Now

Ireland’s No.1 supporter baby Jack

It runs through my mind at night almost as often as I try to fall asleep, who knows what the future will hold for them both ?

The future is not written, don’t give up; that’s what my own Mum tells me all the time. My mum is made of strong stuff, and I think luckily she passed that on to me as well, and now I pass it on to you. x

Normal Now

Don’t give up, feel how you need to feel. Do what you need to do, but keep going. One day in the not to distant future you will realize you have reached your new Normal. My life may not be how I anticipated it would be, but is my normal now. I am not saying it is an easy life, but it is a life filled with love, filled with happiness in our own way. There will be hardships ahead but you face them because you have to. I have two super cute little boys that need me to always be strong, always speak up for them, always do the absolute best I can for them, look out for them always, together with their big sister.

I have been to the depths of despair and back again, I am sure I will be back there again but you keep going, you keep getting back on your feet, keep facing what you have to face and keeping pushing forward. x

Normal Now

Jack before we “knew” x

When I read “Jack’s Anniversary” on the Calendar this morning and realized eventually what it meant I was sad for a moment because I remember how I felt that day but I also now remember why I wrote it. It was to remind me that as heartbroken as I was that day, life would get better somehow, Jack was always going to be Jack no matter what.x He is just as happy today as he was 12 months ago, maybe even happier because now  we know how to help him live the happiest life he can. We live a new reality now, we have a new normal and that is okay x

Jack’s most favorite thing to do right now is bend his head down low so I’l kiss the top of it continuously until he has “enough” kisses lol! Funnily enough it is my new favorite thing to do with Jack. He brings a brightness to my life every morning when he throws his socks over the side of his cot in our room, in his own way he is saying “all right, lets get this day started” lol! It is the little things he does now that really remind me how much love he has in his heart to give and receive. He is a happy little two year old who is the same little boy he was 12 months ago only now more happy, even more loved and more appreciated for all he can and will achieve.x

So tonight when I walk the floors with him for most of the night I’l kiss the top of his head endlessly, before he falls asleep I’ll put a clean pair of his tiny socks over his beautiful toes and tell him I love him endlessly. I’ll tuck him in tight under his covers and say good night my gorgeous Jack, I love you always, sleep tight.x Happy 1 Year Anniversary.xx

baby Jack .x

Baby Jack .x

 

 

 

Comments

  1. Oh God this made me cry. We’re just finding out our 2 boys are autistic and like you said, it’s not the ‘label’ of autism. It’s the struggles they will face every day of their lives that brakes my heart.

    • I know how you feel Emma.xx I have been there and am still “there” from time to time!x You just have to keep going somehow!xxx It is not easy but in a while things won’t always seem so hard xxx Sending HUGS!xxx

  2. Catherine says:

    Hi ya, can I reserve a seat on the sofa for me and my three girls (two of whom have autism)? I’ll even bring biscuits and coffee x

  3. Linda Jennings says:

    Amanda, that’s just beautiful. How you keep going is beyond me, you are such an inspiration and ur boys (and girl) is blessed to have you as their mum.xxxxxxx

  4. Martina Young says:

    Amanda your words have brought tears to my eyes. While my little girl doesn’t have autism but a genetic condition our struggles and feelings are the same. You are an amazing lady and I love keeping in touch with your blog.

    • I think once you are on the Special Needs Road we are all the same as parents.x Trying to find the best way to help our children as best we can and do the best we can all of the time xx Sending hugs to you and your beautiful little lady xx

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