I try to look for the happy things in life as much as I possibly can. I have always been the optimist in my family, my mom once told me I was her little ray of sunshine. I was a happy baby, a toddler who walked up to strangers told them my name & happily grabbed their hand & walked off with them, telling them my life story, much to my mother's horror. I used to terrify her with my lack of fear of strangers. However, in the last decade, I have switched things up a lot. Or rather, the experiences I have endured have taught me to be very careful with whom I choose to be friends & allow into my inner sanctuary.
In 2005, 12 years ago, Liam was diagnosed with Ataxia Telangiectasia. A rare genetic neurodegenerative disease that has an expected lifespan of, at the time of diagnosis, late teens. In the last few years that life span has miraculously, so sad that this is considered a miracle, been expanded to early 20's, but a miracle it is. As the mother of a child with such a small expected life span, every extra year added is a huge miracle. Anyway, because of the diagnosis, I lost friends. A lot couldn't handle me/our family during the first couple of years, depression, shock, outrage, not to mention the idea that they just didn't know how to be friends with a family of such intense need. Some I ditched because they thrive on drama themselves, insincere, built up, fake drama & relished being the center of attention (even if it is negative attention) so much, that they drained the tiny amount of energy I had left after I dealt with our family's real drama. I learned to pick my friends carefully & particularly. I have tons of acquaintances, all good people but not people that make me feel comfortable just being myself. The good, the bad, the ugly me.
Then in 2013, Liam's health started to follow a rapid & terrifying decline. He was 12 years old & weighed 40 lbs. He was having a harder time with chewing & swallowing because the physical decline in his ability to control his muscles & motor function left him too tired to actually chew & swallow his food. He ate less & less & then his immune system started to fail. He got pneumonia repeatedly, ear infections, sinus infections, vomiting for no reason. It just got worse & worse & by January 2014 he was desperately in need of the placement of feeding tube to help him put weight on & grow, he was labeled as, "Failure to Thrive" in his medical records. He was wheelchair bound completely & needed help dressing & bathing & eating...because he simply didn't have the energy or strength to do so for himself anymore. The beginning of Feb 2014 he got his PEG tube, after having a bad bout of the flu in January & having to postpone the surgery because he was too weak to handle the trauma. What was supposed to be a 24-hour stay at Children's in Milwaukee, ended up being a week, 5 days longer than anticipated. He just kept spiking super high fevers & he wasn't handling the post op recovery as well as everyone hoped. In short, we were quickly losing him. We watched the light disappear from his eyes & the look of pain & suffering covered every aspect of his features. It was terrifying. It was overwhelming. I needed to go on Xanax for panic attacks that left me breathless & cowering in a puddle on the floor. They also put me on Zoloft to try & build up my brain's ability to deal. Then there was the lack of sleeping I was getting, next to nothing because even on the high doses of anxiety meds I was unable to relax & stop worrying at night long enough to achieve REM sleep. So onto Ambien as well as the other meds.
I have been on these heavy duty medicines for the last 4 years. Starting in January of this year I started the long process of weaning myself off the pills. It was time. Liam has enjoyed amazing health for the last year, (knock on wood), thanks to the Mic-Key button in his abdomen that allows him to get the sustenance his body needs & the immunoglobulin infusions he gets at home every other week. So having gone through hell & made it out alive & a little more informed on what to expect when the crap hits the fan. I figured it was the time I learned to stand on my own two feet again; the first to go was the Ambien. Nothing is so scary to me than a night of no sleep & then having to get up & face the world the next day. Insomnia is not a pleasant experience. Insomnia & anxiety are an evil combo. Especially to someone who sincerely cannot function on less than 8 solid hours of real deep sleep. I was an excellent sleeper as a baby too. Sleep is & always has been my most favorite thing to do, I inherited it from my mom. She was a lover of sleep as well. And my kids are all lovers of sleep too. Each slept through the night, at least 6 hours, by the time they were 6 weeks old. See? Even God in all His wisdom knows I need sleep in order to function. Some people can get by, I am not one of those people. Not even the tiniest amount of missed sleep is tolerated by my brain or body. Add in there that I was diagnosed with Chronic Fatigue Syndrome when McKenna was 6 months old, 2004, & and you can see that insomnia & I are sworn enemies!
The Ambien went first & it was nerve racking, but within a month I was off of it successfully. Next, I worked on the Xanax. Surprisingly it wasn't as hard, I had been on the Zoloft for so many years that I hadn't really needed the Xanax in months but I was nervous about night time without the Ambien.
I am very happy to report that 6 months later, after beginning the process of weaning off all meds I am med free & happy, content, sleeping well, feeling a lot less fuzzy & full of an energy I haven't felt in a long time. And when Liam's disease takes another decline, and it will, whether it's his health or his abilities I truly believe I will be able to handle it better this time around. We have an excellent team at Children's who help me keep on top of appointments etc... & I am comfortable enough in our new environment, meaning Wisconsin with a very small support group, as opposed to Arizona where we had a huge network of help & support than I was the last time his vitality disappeared. For the first time since we left Arizona, I feel like me again. I still have anxiety & fear but they aren't ruling me any longer. Once again I laugh & smile readily & enthusiastically. I look for the silver lining in a sky full of gray & I find relief through laughter. It's the little things that bring a smile to my face & it's the little things I focus on now.
It's an excellent feeling to find my smile again, to find my laughter. And I am not a delicate sweet little laugher. Oh no, I laugh loud & raucously. Dare I say I cackle? Yes, I do. Delightedly cackling at the top of my voice, with my head thrown back, oblivious & uncaring as to how obnoxious or ridiculous I look, or sound, to others. Once I hit my 40's I simply stopped caring what other people thought of me. I am too old to give a crap how other people view me any longer. It's a relieving feeling to let go worrying about the opinions of others, whether stranger, friend or foe. Not that I have any foes...I don't think I do, but not caring if I do means that even if I do have foes, I don't care. I don't get offended over every little thing that someone might say or do. In the big scheme of life & death, it really doesn't matter. Therefore, I don't allow it to matter. I move on & laugh it off. My job isn't to please the world. It's to please the Lord, and myself. Anybody else after that is the cream on top.
I hope you all get to enjoy the same freedoms as I. That you don't wait until your 40's to realize what truly matters & what doesn't & to allow yourself to be you. I will be me, & you can be you & we'll love each other unequivocally, because of our differences not despite them. Sending love & positive thoughts out into the interwebs tonight. Have a great weekend.
Jess
I have been on these heavy duty medicines for the last 4 years. Starting in January of this year I started the long process of weaning myself off the pills. It was time. Liam has enjoyed amazing health for the last year, (knock on wood), thanks to the Mic-Key button in his abdomen that allows him to get the sustenance his body needs & the immunoglobulin infusions he gets at home every other week. So having gone through hell & made it out alive & a little more informed on what to expect when the crap hits the fan. I figured it was the time I learned to stand on my own two feet again; the first to go was the Ambien. Nothing is so scary to me than a night of no sleep & then having to get up & face the world the next day. Insomnia is not a pleasant experience. Insomnia & anxiety are an evil combo. Especially to someone who sincerely cannot function on less than 8 solid hours of real deep sleep. I was an excellent sleeper as a baby too. Sleep is & always has been my most favorite thing to do, I inherited it from my mom. She was a lover of sleep as well. And my kids are all lovers of sleep too. Each slept through the night, at least 6 hours, by the time they were 6 weeks old. See? Even God in all His wisdom knows I need sleep in order to function. Some people can get by, I am not one of those people. Not even the tiniest amount of missed sleep is tolerated by my brain or body. Add in there that I was diagnosed with Chronic Fatigue Syndrome when McKenna was 6 months old, 2004, & and you can see that insomnia & I are sworn enemies!
The Ambien went first & it was nerve racking, but within a month I was off of it successfully. Next, I worked on the Xanax. Surprisingly it wasn't as hard, I had been on the Zoloft for so many years that I hadn't really needed the Xanax in months but I was nervous about night time without the Ambien.
I am very happy to report that 6 months later, after beginning the process of weaning off all meds I am med free & happy, content, sleeping well, feeling a lot less fuzzy & full of an energy I haven't felt in a long time. And when Liam's disease takes another decline, and it will, whether it's his health or his abilities I truly believe I will be able to handle it better this time around. We have an excellent team at Children's who help me keep on top of appointments etc... & I am comfortable enough in our new environment, meaning Wisconsin with a very small support group, as opposed to Arizona where we had a huge network of help & support than I was the last time his vitality disappeared. For the first time since we left Arizona, I feel like me again. I still have anxiety & fear but they aren't ruling me any longer. Once again I laugh & smile readily & enthusiastically. I look for the silver lining in a sky full of gray & I find relief through laughter. It's the little things that bring a smile to my face & it's the little things I focus on now.
It's an excellent feeling to find my smile again, to find my laughter. And I am not a delicate sweet little laugher. Oh no, I laugh loud & raucously. Dare I say I cackle? Yes, I do. Delightedly cackling at the top of my voice, with my head thrown back, oblivious & uncaring as to how obnoxious or ridiculous I look, or sound, to others. Once I hit my 40's I simply stopped caring what other people thought of me. I am too old to give a crap how other people view me any longer. It's a relieving feeling to let go worrying about the opinions of others, whether stranger, friend or foe. Not that I have any foes...I don't think I do, but not caring if I do means that even if I do have foes, I don't care. I don't get offended over every little thing that someone might say or do. In the big scheme of life & death, it really doesn't matter. Therefore, I don't allow it to matter. I move on & laugh it off. My job isn't to please the world. It's to please the Lord, and myself. Anybody else after that is the cream on top.
I hope you all get to enjoy the same freedoms as I. That you don't wait until your 40's to realize what truly matters & what doesn't & to allow yourself to be you. I will be me, & you can be you & we'll love each other unequivocally, because of our differences not despite them. Sending love & positive thoughts out into the interwebs tonight. Have a great weekend.
Jess