Staying with hope!

Hey friends! I know it has been a while, and I know you all have been wondering if I was just going to abandon the blog, and maybe you have randomly checked to see the tumble weeds blow through, but I promise I am still here. I feel like the last year I have been more stressed than I have been in a long time. The stress has been from every direction, and the light at the end of my stressful tunnel seems to be shining through a pinhole some days. I’ll give you guys some insight and maybe give myself some emotional therapy by sharing. Everyone comfy? Here we go…

First off, as you can all see from some of my past blogs, life with autism is not always a cake walk. Sloane has had a lot of hills and valleys this year. Belly issues have been horrid. We have started to get things back on track, but I swear it is a rerun we cannot escape! Belly issues affect her sleep. And you guys…ughh…before the belly issues resurfaced, it had been the longest stent we have gone with sleeping well. I had actually thought we had finally figured it out. But, just no!!! I cannot accurately in words express to you if you have not lived through this kind-of sleep deprivation how hard it makes everything else. SOOOO HARD!!!! Sloane was waking up at 1 am and staying up ALL night. Then Jude, our 3 year old, still wakes up for a bottle at night (don’t judge…survival people) so between the 2 of them, I was barely sleeping! Mass amounts of caffeine could not even touch the exhaustion! Poor Sloaney was running on fumes which oddly doesn’t always seem to bother her, but still not good for her. And let’s just say I am not that person that can run on no sleep. Some days I seriously felt like I needed to check myself in somewhere.

Her sleep is finally getting better again after almost 5 months. Not back to what it was, but better! I’ll take it. The bowel issues are better as well, not perfect, but way better. And before you ask, yes we have done diets. They just didn’t work for her. Heck, she barely eats as it is. We have done lots of test this year, another hospital stay, and ruled out some bad things, so that has all been relatively positive. Now we just need to stay the course and continue to keep her gut happy.

Of course there is also the normal every day stress that seems to get bigger when the tough gets going. I won’t go into detail with all that, but Jaeson and I could seriously use like a month long beach vacation. I also had some personal health issues that kept me from wanting to blog. Lots of pain, anxiety and not knowing what was going on. It took what felt like forever to figure out where the pain was originating from and what symptoms were related to what. The moral of this story, I once had a gallbladder, and then I voted it off the island in March.

And here is the part that I have not wanted to bring up. The part that is probably the biggest reason why I have not written, because I have not wanted my fears to be outside my inner circle. I probably hold it in (not the healthiest thing to do) because saying it out loud makes it feel more possible to me. We knew when we had a second child that there was a chance that they could have autism. There is a chance for every child. Our child’s risk goes up some due to having a sibling with autism, and then also Sloane’s genetic abnormality, DPD Deficiency. I’ll let you look that up.

I know you are thinking that I am going to say Jude, our sweet 3 year, has autism. I am not. Not yet, and hopefully not ever. But, we are worried a little. Sloane had very obvious symptoms of autism. She had only a few words (all of which she lost), tons of repetitive behaviors, would not look at you hardly ever, would not answer to her name ever, no interaction with other children….I could go on. We had her diagnosed before age 2. Eight years ago that was not really that common. Jude has some delays. He has a couple of red flags, but it is not obviously autism. It could just be delays. I am trying not to be blinded by my hopes for a different outcome. It is hard to fathom watching another child struggle to do the things that come so easy to most.

We have heard it all too, and heck I say it to myself, Jude is a boy and they develop slower than girls. He is mimicking Sloane. He is like having an only child because he doesn’t have a typical older sibling to learn from. I think sometimes people tell us these things because they don’t want to think it could be either. And because his positives are so awesome. He has tons of joint attention, social interaction, loves other kids, he repeats most everything we prompt him to say (not always clear but attempts), and he also has some great play skills. But then the “buts” creep in on me. He should be conversational, and he is not close to there yet. His spontaneous speech and receptive language are behind as well. I 100% believe in positive thoughts drive positive outcomes, and I absolutely keep a positive attitude, but if you have never watched your child go through what we have watched our girl go through, then you can’t know how easy the worry creeps in.

These thoughts make me feel broken a little. I have to stop myself from letting my mind go to an autism diagnosis. We are not there yet. I have to let myself enjoy this age and stage he is in and not be too overwhelmed with worry. It is hard some days. I let myself get a little depressed and bogged down with the “what if’s”. I also, in some ways, catch myself reliving a lot of what I saw with our sweet girl. Just shut the mental exhaustion down Shelley! Shut it down!

Bottom line, life has been in the way! Sooo in the way!! Worry, stress, battling my own thoughts and fears! I swear I think to myself, “this is it, I am mentally at max capacity”, and then BAM, something else hits the fan. And if I am being honest with you guys (and myself), I was not feeling as tough and resilient as I can normally be. I know that is normal, but I HATE feeling weak, vulnerable and pity. I don’t handle not handling stuff well. Yes, I am a complete and hot mess…how ya doin! But I am trying hard to see my “everything is going to be just fine”. I am starting to get to a better place with all of this. Which is why I am sharing with you guys.

I wrote most of this blog a few months back, edited for present of course, and I want to say, Jude has really started to do some great things. He still has a ways to come with some things, but the past few months have me very hopeful. I am going to try to stay with hope for a while longer. It feels better here than with worry. Don’t get me wrong, I will still worry, it is just how I am wired, but I am going to continue to try not to let it consume me. You don’t get to enjoy anything when you are consumed with worry and fear. It is not always good to hide behind “just fine”, but when it is the truth, it is not hiding.

Thanks for hanging in here with me. I am going to try to write more often. I promise! And I hope all of your holidays are more than just fine, I hope they are fantastic!

Lots of love,

Shelley

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