So Very Blessed

It's been a long time since I've posted about Jacob. 

Now that I sit here, cataloguing everything that's happened, I'm sad I lapsed. 

So many things have happened. 

I'm sure I've forgotten some of them.  

And that makes me sad.  Because I cherish so many of those moments with Jake. 

So what is Jacob like at fifteen?

He's in high school with an AMAZING Special Ed teacher and paras that I could write volumes about. Ho my goodness! High school has been such a wonderful experience for him. 

He did unified track and basketball this year (more on that in another post). 

Aside from the therapies he gets at school, he's only getting ABA three times per week, which is a FAR cry from his peak of 6 hours/day, 5 days/week. 

He loves drawing, writing, YouTube, dragons, and playing with his sock monsters (more on that in another post too!). 

He's hit puberty (another post), discovered girls, and definitely became a teenaged boy. 

He loves his nephews, his cat, and all kids smaller than him. 

He's a mamma's boy, and adores his big brother. 

Health wise, he's solid.  No more heart surgeries or specialists. He'll get an ear infection maybe once or twice per year, and he's struggling with an ingrown toenail, but otherwise, this kid is a tank. 

He's strong. 

Has the most wicket sense of humor. 

Kindest heart. 

Still stubborn, especially if you don't treat him with kindness or respect.  But when you treat him well, he'll usually melt for you.

He gives the best hugs. 

His laughter will send me into a happiness spiral. 

He goes out of his way to spend one-on-one time with me every day. And me with him.  I miss him when he's not with me. I miss his cuddles because he's a freaking MAN now and doesn't cuddle.  Yet, he's perfectly happy holding my hand when we are walking through a parking lot.  

There's no guile. Just genuine kindness. 

I am blessed to have this man-child.  

I can't wait to get back into blogging so I can share all the amazing things about him with you. 

Until next time...

Why Does Down syndrome Get a Bad Rap?

NOTE:  This is a re-posting I made on Facebook

Yesterday I read a story about an influencer couple who chose not to continue a pregnancy after learning their baby could be born with Down syndrome and potential lifelong medical challenges.

First off, the medical community gave them bad stats - when you're influencing another human being's decisions regarding life, do better. Seriously. This family had an incredibly hard decision to make, and you made it harder by giving them bad, biased data.

Secondly, this person was presented with absolutely everything that could go wrong with the child, and nothing that could go right. How is that fair?

It's like being presented with the SUN and only being told about cancer risks, burns, drought, blindness, and dehydration, but never telling them about photosynthesis, Vitamin D, improved mental health, warmth, or sunrises.

Having a son with Down syndrome, I had this influencer's exact experience.

I didn't get congratulations, I got condolences.

I wasn't offered literature on my child's potential or growth. I was given a book on dealing with grief.

I wasn't told about my child's abilities, amazing personality, or all that he could become. They only pointed to every possible thing that could go wrong.

MAKE NO MISTAKE...

We've been through some stuff with Jake. Heart surgery. Hospital stays. Lots of therapies.

But you know what?

My typically developing elite athlete ALSO had heart surgery. We've seen specialists. We've had other struggles.

Having a "typical" child doesn't absolve you from difficulties. The title is only the illusion of a problem-free life. Having a special needs child lets you know up front so you can be prepared for them.

I will tell you that I have never loved so fiercely or whole-heartedly another human being as I do Jacob. My fifteen-year-old man-child is my sanctuary and my world. I am an entirely different human being because of him and the light he brings into my life. He reminds me to be kinder, more open, more patient, more loving. He nurtures and cares for me as much as I do him.

I've written a book about him. Actually, I've written several - some action thrillers (fiction). But I'm in the final editing phase of a nonfiction called Take Your Condolences and Shove It.

That title should tell you how I feel about my child. I'm looking for beta readers. If you're interested, please DM me. Apparently, I need to quit lollygagging and get this book out there. People need to see how the world is stacked against our children with Down syndrome. I could not imagine my world without Jake in it.

We don't destroy the sun because it could cause cancer or create droughts. We revel in it's warmth because of how it makes us feel and all the beauty it brings to our world.