An Autism Diary

A day in the life of David Hartley

Late Night Honesty

Sitting here in the middle of the night (kids not sleeping again) at a local Wi-Fi spot checking messages, scrolling through news feeds, and trying to quiet my rambling brain.  The boys are in the back seat looking at books and playing with some toys.  I hear them and a part of me smiles and another part of me is struggling not to ache.  Our family has faced so much in these last few years, some of which I share here and some that I keep to just my close friends and family.  As I think of it all, I struggle to not let it get me down and continue to fight to see the good in it all.  I have learned through the years, that there is always a silver lining or at least a glimmer of light in even the darkest and hardest of times.  Learning how to find that has played a big role in helping me to keep pressing forward and not give up.  My faith in God and Christ, and the comfort and love I feel from Them plays a huge role in that too.

I meet my new primary care doctor tomorrow (Monday) afternoon.  Hoping and praying that everything goes well with that as I need a good doctor at the base of my medical team.  My specialist doctor had me get rid of the cast-like splint and wrap after it started causing more harm than good (got home from the art show yesterday with purple toes and a foot badly swollen).  My ankle is unstable still, but the swelling isn’t as intense as it has been and with the help of my cane, I am able to walk again (albeit slowly and with a limp) which is a huge blessing.

The meeting with the surgeon that will be repairing the fractures and torn up ligaments is in a little over 2 weeks.  A part of me is looking forward to finally getting the help, but another part of me is nervous and a bit scared.  The only surgery I’ve ever had before was the emergency c-section when Joshua was being born and that almost ended very tragically for us both.  Also, nervous about what will happen if I end up wheel chair bound again with a full on cast after the surgery… Hopefully though, the new primary care doctor will sign off on the wheel chair lift the insurance company wants me to get for my car so that I can remain mobile.

As for DogForDavid, the biggest news right now is of course our ongoing art show.  This year isn’t going as well as last and to be honest, it’s getting to me a bit more than I want to admit.  We only had 4 guests on opening day, and yesterday we only had one, and that was the person who helped take me there.  I have been trying to remind myself to not get caught up in numbers but in all honesty, even though they are not the most important thing, they are still important.  Especially when one’s mission is to raise funds for a much needed service dog and also raise awareness and acceptance by giving the Autism community a voice.  That last one is the biggest reason I do the art show and as a result is the biggest thing getting me down in light of this year’s lack of turn out.  How can one share their voice if there is no audience to share it with?  I feel as if I am failing the Autism community this year on that.

I also feel like I am failing my son in the fundraising department.  I have fought and struggled and  persevered as best as I could for over 2 years now and have faced many health battles as a result of pushing myself as far as I could, and sometimes further, in an effort to make a difference for him.  But yet, I sit here silently staring at a total that barely reflects all the sweat, pain, and tears that has been put into trying to gain it and that is still so incredibly far from its goal point.  Lately, I have had to fight back the tears repeatedly and continue to fight against the urge to give up.

One thing though stands out to me even more than all of this though?  David’s smile.  Amidst the struggles and pain, in between the disappointments and set backs, and woven throughout all the meltdowns, triumphs, close calls, health issues, and doctor visits… David still smiles.

Yes, he has cried many times over the years and has had his share of fits too like any kid would.  And even though he is still severely delayed cognitively, he has started to become aware of the basic affects Autism has had on his life (lack of friends, struggle with fitting in, Joshua passing him on self-care and development skills that he sees all the other kids have) even though he still is confused by most of it.  But in spite of all this, David is still the happiest child I have ever known.  He still has so much joy in his heart and so much freedom of spirit.  Even when things manage to get him down, he has shown incredible resilience that to be honest, I envy him for just as much as I am proud of him for it.   I rarely see him hold onto a sad thought for longer than an hour if even that long.  Even more rare are the times something can get him down for longer than a day.

When I think about this, it reminds me once again about how much David, and others like him, truly have to offer the rest of us.  In this world of ours that is often chaotic and can bring just as much pain and struggle as it can happiness and victory, holding onto our inner sense of joy and peace can be a hard thing to do.  But yet, here is my 6 year old son doing exactly that.  And here am I, humbling watching him as I strive to be better at doing the same.

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2 Comments

  1. Dear-
    Your post resonated so much with me. We, too, struggle with health and financial issues on top of trying to navigate our family differences in the most positive ways possible for us all. I think of you with that injury and in the car in the night without wi-fi at home and my heart goes out to you. I know for me, things are always so close to being TOO MUCH and I feel and hear that in this post. And yet there you are – finding your faith, reminding yourself of David’s and Joshua’s smiles and persevering. Don’t you sometimes just want to scream? Scream, maybe! And then…back to finding the small joys and triumphs. you are NOT ALONE.

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