This boy…..

Daily Photos

Tuesday's are our days. Knowing he's going into Kindergarten in September makes these days even more special. #judahzane #mybaby
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This is a picture from earlier today. I love this little boy something fierce. It’s not that I don’t love the other boys (and girls) but this little one has his own piece of my heart, in much the same way that the others all have their own special pieces.

I had no plans to get pregnant with this one. He was such a surprise and at the time, I was so conflicted. I already had 4 children and had lost 4 others…I wasn’t sure that I really wanted to be pregnant again with all the accompanying anxiety, sickness and fatigue. And yet… soon as I knew I was pregnant, those fierce maternal instincts kicked in and I could not fathom not having him.

I was also conflicted because he would be our 5th child and life had not been easy with Jeremy and at that point, all we knew was that he was dealing with ADHD. It was while I was pregnant with Judah that we started to pursue an Autism Diagnosis for Jeremy. And then……just when we were expecting Judah to arrive, we discovered that Gelica was just starting an intense journey with Cancer.

So many dreams and plans that I had in regards to Judah’s birth were dashed. I like to believe that regardless of how your baby is delivered, that as long as the baby is healthy and alive – it’s a success. So by those standards, he arrived and was alive and was healthy and so………..SUCCESS!!!!

Sort of!

That time was such a difficult time filled with sorrow and so much grieving. There was so much stress. And this “ideal” that I had held of a peaceful home birth, followed by opportunity to enjoy my baby and his infancy was demolished. It was replaced with severe anxiety, chaos, fear, uncertainty, mortality, insomnia, medical knowledge that we never wanted to know about, and a family split between two places.

I honestly wondered WHY this baby was born. Why was he born into such unrest? I wondered if he somehow held a key to Angelica’s journey back to life. We actually saved his chord blood in the event that he was a possible match for Angelica and she needed stem cells. I feel so much guilt over that because in essence we robbed him of blood designed for him on the hope that it might be able to help another child… tough.

I (and the rest of the medical staff) were surprised when he was found to be an EXACT match for Angelica….BUT…there was not even half as much as she would need, if she needed it. I’m still not sure how that plays into anything and I pray desperately that we never EVER need him to “help” her out, not now or in the future.

I feel like his infancy was a blur. I tried with everything in me – and there wasn’t much – to hold onto him, to enjoy every moment that I could….but it also felt like I was giving him leftovers. It is definitely not what I had planned, hoped or imagined.

And yet, despite all the chaos, he remains a light in my world….in our world. Yes, as the youngest of five, he has this innate ability to find the exact perfect way to DRIVE EACH OF HIS SIBLINGS CRAZY and he uses that gift way too often. At the exact time, his sweet smile and tender heart can break through even the hardest anger that someone might be feeling…and he does that often, too.

It’s not that my others boys don’t have their own special “something” because they so very much do, but often they instigate or create the chaos. But this one….he swims through and above the chaos with the occasional foray into it. He wouldn’t want to be completely left out.

He is well beyond the ages when the older boys started displaying Autism and ADHD symptoms and behaviors. I feel like I’ve been on edge waiting, wondering if and when he was going to flip the switch. But, he retains the ability to focus, to sit, to listen, to reason, to see. He continues to amaze us with “theory of mind” that the other boys still struggle with.

In someways, his “abilities” are starting to exceed or move beyond in certain areas that his older brothers both struggle with. This can be something that is both exhilarating and saddening. It’s a reminder of the areas of deficit that the other boys have. It’s “in your face”, you can’t escape it….not that we can “ignore” the issues the boys have, but when your 4 year old is capable of understanding reason; and in contrast, your 7 year old or 14 year old are screaming the same sentence over and over and over again, in response to something you have asked them to do…’s unsettling.

It’s also a shocking reminder that this behaviour that you have been experiencing for the last 14 years is not actually a result of your terrible parenting. The fact that you have expectations of respect from all your children but some of those children are capable of more and some are capable of less…….A lot of that has to do with each individual child and their particular abilities and disabilities.

But this boy…….

He is a light in the darkness.
He is sunshine on a cloudy day.
He is love amidst the anger.
He is so often calm within the chaos.
He is gentle around the rough edges of our life.

He is easy to love.
He is quick to help.
He is quick to comfort.

I am so incredibly thankful that he was given to us.
We needed him….
I needed him……. more than I ever could have imagined.

His name means “praise” or “to praise”…..and its fitting.

This little man is definitely celebrated and praised for his love, his light, for his very being.

And I love his so very, VERY much!

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

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