Goddammit…. Do you ever feel like the sky has just opened up and shit all over your life? That’s the only explanation I can come up with at this point.
I truly try my best to have a positive outlook and in most cases I succeed. It may not always seem that way from the outside looking in but try living one day in my shoes and see if you would struggle to remain positive.
There’s no end to the things on my mind or the worries in my heart.
While there are some major financial woes that keep me up at night, it’s the boys health that has me physically ill from stress and worry.
Emmett has been seeing a resurgence of his PFAPA related fever cycles. As time goes on, they are continuing to evolve and change their symptoms.
His high grade fevers are much fewer but the mouth sores, low grade fever and joint pain are all too present.
He’s been dealing with a very unusual flare for the past couple of weeks. It’s there and gone but it keeps returning. Today, Emmett’s broken out in a rash on his right arm. Some of the bumps are very sore and before bed, it started showing up on his left arm.
I don’t know what do except take him to the doctors in the morning.
I can’t send him to school until I know what this is. He’s never had a physical rash with his fever cycles before but I’m aware that it’s a known symptom of this extremely rare disorder.
He’s already missing a bit of school due to this issue and while he’s ahead of everyone already, the stress and anxiety he will experience trying to catch up on what he missed won’t be pleasant.
As I’m writing this, Elliott just came down because he feels likes he’s going to throw up. He’s gone back to bed and I’ll check on him shortly.
Update: I checked on Elliott before I went to bed and he’s definitely getting sick. It’s probably not stomach related. He’s getting congested and has post nasal drip. That always upsets his tummy. This will probably end up being respiratory, which isn’t fun for anyone but especially someone with asthma.
The other major worry I have is Gavin.
He’s begun experiencing pain that I can only say is reminiscent of Fibromyalgia. He’s dealing with muscle, bone and joint pain.
Lately he’s been getting slammed with sudden headaches as well. I’m relatively certain that these are autonomic in nature because they seem to occur when he stands up suddenly or bends down to pick something up.
They also subside as quickly as they strike. I have him lay down flat and that helps to equalize his system. It seems to do the trick, which suggests this is a new symptom of his condition.
I wish I could provide my children with the relief they deserve. I say deserve because they never complain about what they’re dealing with or the lots theyve been given.
When Autism enters one’s life, it often brings along one of its many friends. This friend is known as speech delay.
In Emmett’s case, this delay significantly impacts his expressive language and seriously limits his ability to tell me how he’s feeling, either physically or emotionally.
In Gavin’s case, his latest speech and language evaluation at Akron Children’s Hospital has him in the severe speech and language impairment category.
Gavin really struggles in this area making it exceptionally difficult to know what to do, in regards to helping him.
Elliott does have more of an ability to share his thoughts and feelings but won’t very often. He’s been very closed off and distrusting for the last year or so.
These are just a few of the things I’m trying to juggle at the moment and while it feels good to get this out there, it’s extremely overwhelming at the same time.
Tomorrow will be spent at the doctors with Emmett needing to get checked out and Gavin needing his bloodwork.
Emmett needs to get to his specialist in Cleveland but logistically that presents a challenge.
I feel like I just can’t do enough and I’m crumbling under the pressure. If you’re one of the people that reads this blog and sees me in person, I’d probably look really tired but otherwise okay.
I’ve found that it’s much easier to present a everything is just fine appearance in real life because anything else makes people uncomfortable. Besides, if I were to open up face to face with someone right now, there’s likely to be ugly crying involved and I can just do that on my own.
I know this doesn’t seem overwhelming positive of me but the reality of special needs parenting is such that sometimes life is just plain shitty.
There’s no amount of fluffy thinking, fairy dust or rainbows coming out of a unicorns ass that can counter just how shitty life can be sometimes. That’s just the cold, hard and unpleasant truth.
That being said, tomorrow is another day and I will play my role to the best of my ability because I love my kids more than anything in the world.
I will take on any challenges as they arise and they will arise. At the same time I will also hold out hope that with the dawn of the new day, we just might catch a break… Even a small one would be of some relief… ☺
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