Much Germs, So Yuck!

So the video is live, Alex has a bacterial infection surprise, surprise, because sickness always runs rampant in this house. Took him to the doctor who was AMAZING. This guy took the time to earn his trust. Alex even opened his mouth and showed his ears to him. He gave the doctor a hug at the end, which is not something he does with people. Affection is not his thing having ASD.

I’ve decided to switch doctors to the one we saw. He versed me better in the short visit with him than the two doctors I’ve seen in the last two years have. There is a lot going on with me but I will save that for another day. For now I’ll just say there may be some serious items on the horizon for me and my own health some of it having to do with my thyroid issues that cropped up in 2015 around Christmas for those of you that have been long time readers. That is never anything new though.

 

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But if you never try you’ll never know, Just what you’re worth

The other day some friends and I played a game. We listed off songs that we could listen to for the rest of our lives. One song only, forever. I of course had trouble choosing and ended up picking three. Music has always been the mainstay of my life. One of my friends chose “Fix You” By Coldplay. I listened to all the songs chosen and this one resonated deeply with me.

As of late there has been a lot filtering around with Alexandr’s care that has been incredibly difficult, and I have found it so hard to muster the strength and tenacity in myself that I typically have. that strong will and push forward attitude I always seem to have has been so rocky. perhaps it has been because of some of my own personal struggles but whatever the reason my resolve is being tested by everything that is facing us at the current moment.

Alexandr entered this world under the most spectacular of circumstances, at thirty three weeks, and spent a month in the neonatal intensive care unit. Since then it’s been a non-stop roller coaster ride. In the last year we’ve spent a large amount of time in therapy four times a month. We have had progress, and we have had setbacks. Anytime we make headway I feel like we do an about face and it’s two steps in reverse.

While other parents can speak to their children who are about to turn three, I cannot. Instead we communicate mostly through hand holding and pulling. I have spent the last few weeks struggling with what therapies to choose for him, what will serve him best, how to get them for him, and how to move forward.

Progress.

That’s always the word of the day, how to make progress. How do I get through to our son?

I told my sister the other day, who understands exactly how I feel, that I feel as though it’s like being locked outside a house with your child inside, staring in a window from the cold. You cannot get in until they can figure out how to open the door.

Autism is a fickle thing, and though he may not have an official diagnosis yet, that’s the label that we’ve all put on it at this point, his therapists included, and it’s something that over time, I’ve had to come to terms with.

Fix you.

That’s exactly how I feel.

I wish I could fix it. I want to fix it. I want to make it all okay for him, and make the pain go away. I don’t want my son to be upset when he is around too many people, too much light, sound, or just general chaos. I want him to be able to go from place to place without being so upset he can barely breathe. I want to take all his pain and anxiety and bear it on my own shoulders. Give it to me, and make him okay.

Today is world prematurity day and I was reminded once again how precious he is. Despite all of this, and all of our struggles, I have taken the last few days to step away, away from all of it, the appointments and therapist evaluations. The upcoming school placement (he starts preschool in February). The developmental pediatrician evaluations and the figuring out what to do about this child psychologist business, and I stopped to enjoy my son.

Sometimes I get so caught up in all of the need of development. I forget to just slow down and enjoy him as he is now. I focus so much on what the next step is, that I forget to take in the now.

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 Sometimes we have to just let go of what we think we can do, to find out what we really can do, and be. We have to get out of our own way. I feel like I spend so much time at times TRYING to be the best parent that I can, that I miss just playing in the dirt with my son. I should let go more often.

In the past two days I’ve been able to take down the barriers in my house and stop using the baby gate, and bring him a little more into my world. He has his own space in our office at that little desk of his own. He is learning a little more about boundaries and I think he’s actually understanding it a little bit, because I’ve given him that opportunity. We both have been feeling sick as well and for the first time since he was seventeen months old he wanted to sleep in my bed with me, and I haven’t gotten those kinds of cuddles since he was that age either. I forgot what it was like to have him need me that close. I cried my eyes out after he fell asleep. Something he will probably never know or understand, but I needed that from him so badly.

I just needed to try, to let myself know what not only I was worth, but what he was capable of.

I think we both needed what came out of the last few days.

There is no fixing that needs to be done in this house I have always known that, and while I may always want to make him feel better because I’m his mother, and will always want to take that weight off his shoulders, I’m learning every day to handle things a little better. It is all a process, and we learn from each other.

 

Don’t hold a grudge or a chip and here’s why…

I know you got mountains to climb, but, always stay humble and kind….

So many things have happened since my birthday a few short months ago, and it’s almost too much to catalog. I can’t even really go through it all, but suffice it to say, between multiple trips to the hospital, a stint in ICU, and in general more health issues than I care to admit to myself, I seem to have stabilized somewhat. Toward the end of this month I finally make my way to the Rheumatologist I have been waiting to see since last year. With any luck this will get us some more real answers, unfortunately it may create more hiccups.

There have been plenty of new developments, Zane came home for multiple months, and is now back on the road again, back to doing what he’s always been good at 😉 I know he’s married to me, but that blacktop is his second home, and I’m okay with that. There has been so much more that’s happened and I could go on forever about everything that’s developed over the last few months. Let’s just say I see so much coming on the horizon. I will meet it all with my head held high as I always have, and with my hand held by those whom I love. Zane has been such a driving force for me this last year and I can’t believe how much I have changed being with him.

They say the world and the people in it can change you, and that’s certainly true. I think he has changed me more than he will ever know, but more than that he’s helped me find me again. It’s like settling back into the earth that I once was. I’m comfortable in my own skin again. I don’t feel like I have to pretend to be someone I’m not. No need to impress or keep appearances for anyone. I can be as raw as I feel I truly am. I can sob and let my emotions as free as they are. If I honestly cannot handle the day and the cross I bear is to heavy, he will take it off of me and hold it for as long as I need, and hold me in the meanwhile. Even from hundreds of miles away. I have never met someone so kind and gentle, nor someone so caring. I cannot ever see myself anywhere else than in this life.

Everything lately has been so heavy on me too, there has been so much difficulty, so much sickness and pain, one bit of bad news after another. One unanswered question after another. I feel like it’s a constant spiral some days.

Alexandr continues to be my guiding light though, every day I awake to his sweet smile and “Hi!” I get to look into his beautiful face and get kisses and hugs, I play cars and teach him things, he puts bugs in my lap and we play in the dirt. I spend too much time in the sun, and I wouldn’t trade and ounce of it.

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I really do wish I could see the world through his eyes, the wonder he must feel at every little thing he sees. He has been making great progress in therapy, his favorite color is orange and he is doing great at saying them now. He can now say “Juice, eat, and bite” he knows what they all mean and uses them respectively to get what he wants. He also says “Thank you” and “Hi” he is starting to call me “Moma” on occasion, which is rare, but just about makes me cry when it does happen. We had a regression of his verbal skills early on and “mama” dropped from his vocabulary completely after being around for a very short time, since then he has not referred to me by a word at all. I’m very touched he is starting to use it again and I cherish it when I hear it. Sometimes it wears on me with how hard I work to not hear it. I love him so very very much, he is my everything, my soul even in some ways. To have him not say things like “love you” or “momma” is hard sometimes. I know that some people who have children who are somewhat non verbal, autism spectrum, or special needs will understand this. It can be difficult when they cannot reach out to you through words.

I try to remind myself that it’s not my fault, nor is it his. It may never be his way, and that is okay. I know that he loves me, and appreciates me. So when he does hug me, or kiss me, I just appreciate it that much more. I also do not scold myself for feeling jealous or upset when I sit at the park and see mothers of other two year olds carry full conversations with their children, where they say “I love you so much mommy!!” I remind myself it’s okay to hurt. I’m allowed to feel that way, just as I was allowed to mourn my pregnancy, and feel pain over the things that I lost in his infancy. I will mourn a great many things as he grows, and I will not allow him to feel that any of it is his fault, nor will I EVER let him feel like he is anything less in this world even if others want him to feel that way.

I know that he will have challenges. I know that his growing up will not be easy, but I’ve always grown to know that being his mother, or being a mother at all, is something that takes more than I ever imagined, it takes every part of your being and then some. I will spend the rest of whatever life I am granted making my son know that his mommy loves him and has every faith in everything he could ever be and will be in this world and will stand behind him 100%.

I’m not entirely sure when I started writing this that it had a direction, but perhaps I just needed to talk a little bit, and get out some things that have been inside me lately, and this being my platform, and my soap box, I pour my heart out here.

The truth is, I love my family. I love my son more than myself, and I love my husband more with each day that passes, and as it sits I see only better things on the horizon for all of us. Like I’m being embraced by a warm hug most days, even if some days are hard, nothing breaks through that hug.

Thank you to those of you who share in reading about my family and my journey through life here on my blog.

Till next time… Always be Humble and Kind.

Constantly Mourning, and now I am 29.

In front of you, you see a woman who us struggling to maintain, one who, from day to day,e is doing everything she must and can to hold it together. While you may see the smile on my face sometimes, it all too often masks the complete anguish and turmoil I am in at this point.  Yes, that is a cane, yes i need it fairly often now. I even have a handicapped placard for the car I am no longer allowed to drive.

Yesterday I turned 29 and while my Birthday was the best I have ever had, some part of me is the saddest I have ever managed to be. I feel more of a burden and hindrance than ever before to my son and husband. In the past four months or so I have lost more of my independence than I thought possible by this age. My amount of medications is staggering to a degree that is officially alarming. Now that I am epileptic that takes a large chunk of me doing certain things without help, like driving, away. I even have a wheelchair on standby should I need it as well.

I miss being 19 sometimes, and sometimes I wish that Zane had met that version of me. So full of spit, fire, grit, and determination. Everything mentally I am today but with a bit more of an ability to carry on. Then at least Alex and him would have gotten more out of the less chronically ill me than they are now.

It is incredible to me to look back on all I am and wish for so much more. I always knew I would likely regret choices, but I would say that my choices led me here and I would not take them back. Now my real regret is not living fully when I had the days in front of me to advance and swim in. I had opportunities on and off my whole life to push myself as hard as I do on ky good days now, but man, the things I could have accomplished. I feel as though I should have made better use of the time given. I suppose everyone probably feels that way a bit.

I cried yesterday, and I cried because I know that I will likely never be what I once was and yet again it is time to lay to rest another version of myself that I will miss.

I do not know how many more years my precious life holds. I do know this.

When I wake up each morning I am greeted by a man who tells me he loves me and who makes sure I take my medication, and get food after I am up and about. Then I get to wake up our kid, who, despite his many issues is always at his door to greet us with a “Mama, Dada!”. Sometimes we get hugs, sometimes we do not. I just remember to drink in the mornings and nights that I do get them.

Thais birthday was the best of my life, hands down. It was also very sad. I have a feeling moving foward in my life that might be normal for me. For those of tou close to me, I love you all very much. Here is to next year and making it to the big 3-0. ( My cake and gifts thia year were awesome.)

Goodnight Everyone,

Shari

 

 

 

 

 

 

 

Being a Spoonie, and what’s wrong now?!?

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As many of you know, it’s believed that I have Lupus, though my diagnosis isn’t officially on paper yet. I go to see the doctor that will confirm this in July. This means that I am chronically sick. I am never fully healthy and I don’t ever “get better” which sucks. One of the most common terms tied to chronic illness is being a “Spoonie” this is often for those of us who have a hard time functioning on a daily basis. (Hang with me for those who know me I’m sorry if I mess this up you’ll read why I might be writing funny).

So the idea is that everyone has energy, and normal people have an unlimited amount. Those of us who are sick, are limited. This is measured in “spoons” kind of like teaspoons. Those of us who are sick, when we run out, we’re out. We only get so many a day and each activity uses up some of our spoons. You can read more about it here.

The Spoon Theory written by Christine Miserandino

So recently things took a large turn for me, on the 10th of March I ended up in the ER with some really severe pain. They treated me with steroids and the norm, did blood tests and everything came up the way it normally does. Not normal for a normal person, but semi normal for me. I went home, took the meds, rested, and immediately started to improve. Then it came time to come off the medication and things went to hell in a hand basket.

About a week later I came off the prednisone steroid med, and as soon as that happened I started to swell up, badly, and then my joints and muscles became so stiff that I could hardly function, I called my doctors office who could not fit me in, they told me to go back to the ER. When I returned they immediately gave me more steroids as well as some other medications to fix all the issues. They began to determine that I was in a flare. The next morning I saw my doctor who decided to continue to let me flare on and off until July when I see the rhuematologist. I’m thinking of switching doctors because he believes that treating me is a bad idea, instead he wants to wait until the problems worsen, and then try to fix them.

After all this on the 24th, I had a seizure, the first time I’ve had one where my body twitched. I ended up at the hospital again and they determined it was a simple partial seizure, they gave me ativan along with some other medication including more steroids because I was still swelling, and antibiotics because my bloodstream was showing antibodies as well as my white cell count being high. The next morning I saw a doctor in my doctors office, he is getting me a wheel chair, since I have now lost my ability to walk, the vertigo is too bad on me, at the current moment. He’s sending me to a neurologist to check me out with an EEG as soon as possible.

Since then I have had a petit mal seizure and a grand mal seizure, my very first one of those. I still cannot walk and after the grand mal seizure I was paralyzed for a good 10 minutes. Every seizure has been preceeded by some aura, from me smelling onions, to seeing our cat as shiny, to talking about random ducks and ladies that aren’t there.Everything about this has been scary as hell, but this is where I am today. I will continue to fight. I have no idea what my future brings or how many of you wanted to know any of this, I just felt like letting it out and a facebook post wouldn’t do it. I’ve let some of you who are closest to me know via private message what has been going on, and if you want to know more please feel free to ask me.

For those that are wondering what we think is happening here is your answer. Lupus as some of you may know, attacks the healthy cells and tissues in my body much like your immune system would attack a cold. It seems as though it’s beginning to attack my brain on top of the other organs it’s been attacking. This would explain why i am beginning to have seizures. We don’t really know anything for sure right now and right now I’m just in limbo. I’ve been so groggy

Zane has been amazing, he’s been taking care of everything, the house, bills, cooking, cleaning, Alex. Everything. I could not ask for a better partner in this life, he’s incredibly supportive and even though I know he’s just as scared as me, he’s there, 100%, exhausted, and fighting right by my side.

These boys are my strength. Happy Easter to you all.

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Two as one, and my life continues on.

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My soul sparkles and my heart shines. I am Mrs. Womack forever more. On Valentine’s day 2016 I gave myself completely in vow to my best friend and chose to spend my life with him.

 

Zane and I have had so much fun with each other. That has also been foreshadowed by a large amount of responsibility and difficult times together. We have done a lot to make our life together and our place in this world. We have worked, as a team, to be where we are. Every single day we make sure to show each other in every way we can how much we love each other. Our wedding day was no different, and every single person who was at our wedding was utterly touched by the ceremony and the amount of love we have for each other. Even the pastor who performed the ceremony was moved by the love flowing out of the two of us.

 

Did we make Eve Online video game jokes in our vows? Your damn right. Did we dance poorly with each other after the ceremony even though no one else danced? Absolutely. It was a blast. Everything was beautiful. It was perfect. I walked down the aisle to our song “Bright” by Echosmith. Our nieces and Nephew could not have been cuter. Alexandr and our Nephew made adorable ring bearers, and my brother in law and sister were wonderful. My friend Matthew walked me down the aisle to my waiting future husband who couldn’t have looked more shocked and in love. Then we were married! After our dancing foolishness and some pictures at the park we had dinner at a place called The American Bowman Restaurant. It sits atop an amazing microbrewery called O’Malley’s in Kansas that makes some amazing beer. After some amazing conversation with family and some close friends one of whom, Richelle, I had not seen in far to long and was so happy to get a chance to see even if we didn’t get to chat much given the excitement, we we relieved of parenting duty for a few days for our “honeymoon”.

 

We spent the next few days having fun visiting with Matt and doing things like playing arcade games at Dave and Buster’s, and in general just being big goofs. It was so much fun. Soon I’ll make a post about how I did the budgeting for the wedding. We were able to clock in at a VERY small budget for the wedding How small? Check out my next installment to find out, but I bet you’d be surprised to find it’s well under 1,000 dollars.

 

Moving forward. Life these days is great. Zane is going to be trying out a driving job here in town, this would allow for him to be home at night, and have two days off a week. This is absolutely amazing because a lot has happened in the last few weeks. I found out that I also have Kidney disease on top of everything else (IgA Nephropathy/Berger’s Disease) and our son was just placed as special needs as he’s showing a 25-50% delay and might have sensory processing disorder. Not to mention that I badly wanted him home. I love him so much and having him home only four days out of the month was so tough. He’s so much of my world and I’m such a strong person but he’s such a big part of my life, having him hundreds of miles away….well it sucks. I hate it. So I hope this switch sticks and works out because I want him here. I prefer him here and I have no doubt he’d rather be here too.

 

Our new family member and her genie

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This is Zena, our precocious Maine Coon kitten. She joined our family shortly before Christmas from a rescue called DivaPets. Zena is adorable and hilarious, often getting herself into craziness around the house. She’s been quite a joy to have so far.

As most of you know I have lupus as well as other conditions that make my immune system a bad match up for any kind of illness. The common cold can knock me out for weeks, sometimes up to a month. I have to be extra cautious in everything I do when it comes to sickness. I also have good days and bad days. On good days I operate at anywhere between 50-100% of my normal self. On bad days…a lot less than that. As a result, the litter box was something that I just wasn’t a big fan of having to deal with. No one wants to deal with a littler box anyhow but with the few illness you can catch from litter handling (which is why pregnant women who are immune compromised are discouraged from handling it) and the work that goes along with it I wasn’t sure I was up to the task. I really wanted a furbaby to add to our family. Since my boyfriend is gone a lot of the time and I deal with so much stress as well as having to care for my almost two year old on a daily basis with all of these issues, having a companion to cuddle up with at night time and to keep me company when I was feeling upset and lonely felt like a good idea and my boyfriend agreed.

So I did some research. Enter CatGenie. A WASHABLE litterbox. Yeah you read that right. It’s a thing. It’s a litterbox that automatically washes it’s self. Now let me tell you. I looked at the litter maid systems and such. The stuff that goes along with them is expensive and while they have come a long way, they got nothin’ on this thing.

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“HAAAAYYY, This thing is super fancy.”

So how does it work? Well first of all you can hook it up to either a toliet, utility sink, or laundry exit/water system in your home. Our system we chose a toliet. The water that cleans the system shares the same water that fills the tank of our toliet. Then there is a waste hose (which is the tan hose you see in the right side of the picture next to the toliet) that goes under the lip of the toliet lid. Once your kitty does their business the Cat Genie grinds everything up with a special solution turning it to a liquid and pushes it down your toliet. Fresh water is used with the solution to clean and rinse your washable granules, then the system gives it all a nice blow dry with warm air. It smells like rose hips btw and makes our bathroom smell super awesome. You can chose different settings on how the system cleans, you can either push the button yourself, have it automatically clean a certain amount of times a day, as well as some other options. Or my personal favorite.

You can set it to “Cat mode”

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“C-c-c-cat mode??! It’s not gonna hurt me is it…?”

No Zena, I promise lol the litter box will not hurt you! Cat mode activation means that once your cat does what they do in litter boxes…it will activate at a set time. Which can be set to your preference, between 10 and 30 minutes after the sensors  are triggered. Once the time interval has passed the arm comes down and does it’s thing dropping everything into the “hopper” abyss. I never have to deal with dirty litter or mess of any kind. Any liquids fall through holes in the bowl and are dealt with in a similar manner as solids. Now I’m sure you’re thinking that this is all too good to be true and probably insanely too much for a cat. Trust me it’s totally worth it. I wouldn’t trade this thing for the world. Zena loves it and Zane, Alex and I couldn’t be happier with it. The answer is clear to me honestly and without a doubt. If you’ve got a cat you need this in your life. I don’t ever have to scoop or deal with any of the dust from regular litter and it’s so much nicer. The only regret I have so far is not getting a litter mat for it which I’ll be fixing fairly quickly.

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In my experience so far we did have an issue with the CatGenie. I spoke with customer support because our unit was beeping at random for seemingly no reason. After Zane and I tore it apart to make sure it was clean and clear of clogs and that the error light was not to be taken seriously I finally gave them a ring. They told me that the only possible cause was a very rare error. Me, experience a rare error? Who could have seen this coming?! >.< The customer service department was expert and extremely friendly, they asked me questions and had me do some diagnosis on it. She also gave me some advice about adjusting Zena to a new household which was extremely nice of her! She told me to call back if the beeping continued and asked me to keep tabs on which lights came on. I did just that and unfortunately they did continue. When I called back I got to talk to the exact same representative, she took care of everything and sent me out a new processing unit, it was here in days, it seems to be functioning just fine, no beeps to speak of. It came programmed already in cat activation mode even! All I had to do was confirm it! I am so impressed with this company. We got our unit on a deep sale at Christmas time for 180.00. I would say it was WELL worth what we put into it, given that the litter is washable, and you don’t have to replace the granules all the time, the sani-solution lasts 3-4 months, and it keeps us from having to deal with the sanitary issues of a regular litter box? I’m a big fan.

Each one can accommodate up to 3 cats or so I am told and I would recommend it to any cat owner. Zena loves it and has no issues with the cleaning cycle now that she’s used to it. That took about three to four days for her to be completely aloof to the whole thing. Now she could care less about it, some days she finds it interesting but other than that it’s just a thing that happens during the day.

CatGenie Site

There’s where you can pick up the one we bought. We got ours on Amazon but it turns out that does not automatically activate your coverage on the system, and doesn’t give you rewards, nor does it cover shipping, but if you want to get it on Amazon here’s the link for that.

CatGenie on Amazon

 

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Until next time, hug your furbabies! Also buy a CatGenie, and no I’m not being paid or given anything, I just love this product that much, honestly!