Today we are getting carpet laid in the basement. The window is 8am to 6pm, awesome! The radiator was moved the other night, and had my GC been doing his job, he would have suggested that we do it before the freaking drywall was done, so that the pipes could be “behind” the wall, but now they aren’t. So the radiator was moved out of the middle of the room, yeah!!!!, let’s focus on that.
The freaking drop ceiling still looks like crap, but it seems that crap is the best we are going to get. The GC finally agrees with me, because his lights needed six inches of height to be installed, and the ceiling is only allowing for about three inches of depth. So we either have to rip the drop ceiling out or change the lighting plan. Hence lighting plan changed, and we are only paying the original drop ceiling quote. The plumber also told me that if we’d called him before the drop ceiling was started he could have moved all of those radiator pipes “up” for us, by changing them out to the modern more efficient and smaller radiator pipes. Hey GC, shouldn’t you have known that too. Oh well, another reason not to use him again, and remind myself that we are selling this house. Besides moving the pipes would have added a few thousand to the job, that we simply couldn’t have swung right now.
Did I mention that I hate this, I don’t want it to be over, so much as I wish that I were a carpenter/plumber/electrician myself. Thanks Amy, Mom, and Joanie for all of your kind words on my ranting.
I think that I know what my next tattoo should be:
I believe that the world of contracting is very misogynistic, I think that some folks might see all five foot two inches of me and think that I am a push over, I think that I am very nice, and fun, and understanding until you F up my house and then, watch the F out.
We are having an issue with our Contractor, and when I questioned him about his sub-contractor’s work, and said that until they fix it, I will not pay for it and that I believe that they were being lazy and careless, he didn’t like it. That makes me sound really harsh, and maybe I was a bit, but here is the back-story:
Our Contractor is from Ireland, in his mid to late fifties, and unfortunately last week, one of his brother’s in Ireland, passed away. He went home for the funeral and wasn’t on our job for a week. I understood, urged him to take care of his family, and that we would be fine with out him. He promised me that work would continue and that he would give me the phone numbers of his Sub’s, so that I could GC for the week.
He didn’t get me those phone numbers, his Sub’s didn’t show up, when expected, missing days at a time and when they did the work was sub-par, to be kind. They also sent me off to get new supplies, three times and still didn’t finish the job.
Here I will show you
So when he got back to work this week, we met at the house and starting going over the work, and I wasn’t quiet. I think, that he wanted me to say how amazing it is, how happy I am. How could I, I have eyes, and I’m too broke on this project, to pay for crappy work. So he got all pissed, and wouldn’t look at me, and muttered under his breath, and walked away. Well you know that I am not putting up with that.
He said that he didn’t need this crap after all that he has been through, and that he was leaving the job. I tried to talk to him, I (like a girl) followed him around the house, asking him to stop, to talk to me, to listen to what I was saying. I don’t think that your sub-contractors did a good job, I asked him if he did, I asked him for a schedule for this week, because we are a week off of goal, and since he didn’t get me a flooring guy’s number or the painter’s number, I have had to coordinate some of my own Sub’s, and now I need to coordinate everyone. I said that I am not un-happy with his work, I am un-happy with their work and he is my GC and I expect him to fix it. I don’t expect to pay for it until it is fixed, and I don’t expect to pay more for it, because they estimated a tough job, and there were no surprises in the job, so why should I pay for more? He went outside ranting, kept repeating that he was leaving, leaving and that he didn’t need this crap. He walked away, went in to the backyard and I heard him yelling at someone about me. I sat on the front steps and waited it out. Then I heard him in the house working again.
I went in, and he was assessing the stairs. I asked him if he was leaving the job, and he said no. I then told him that he owed me an apology, and I apologized as well. I feel like my hands are tied, I feel like I will never use him again, but for now, I have to get this job done. I truly believe that if I were a guy, this wouldn’t have even happened. He wouldn’t have thrown a hissy fit. I know that I should respect my elders, but shouldn’t he respect a lady? Ha, ha, ha
Tomorrow the floors are done being re-finished. The baby GC is working on the stairs, the new plumber is moving the radiator and I am painting a mud room and sanding some back stairs.
We are working on getting our beloved house ready to sell. Our target timeline for a basement renovation, bathroom update, and a ton of painting and staging is next weekend. But that seems to be getting farther and farther away. Since our tenants moved out a few weeks ago, Micah and I have been working on the house every chance that we get.
I’m super stoked about the staging, and hopefully it will look good. The trim painting and hemorrhaging of our bank accounts I could do with out. I always joke that we’ve put a ton of money in to our house to make it look like it needs a lot of work, but it doesn’t really need a lot of work anymore.
It still has a few hurdles, but hopefully if we price it right, those hurdles won’t be insurmountable.
Here are a way way before, way before, before and now shots of the basement and bathroom.
So that’s it for now. I’ll try and take some more pictures tomorrow of the room’s upstairs that I am working on.
Ryan has been sick for a few days. It seems to just be a virus, tis the season. We’ve had three days of fevers, sniffles and lethargy. Today, she woke up hotter than ever and more lethargic so we took her to the ER. I didn’t want to take her to the ER, but it’s Sunday and when we called the Doctor on call at our Pediatrician’s office, he suggested it. Why don’t I want to take her to the ER? because they always admit her, or almost always that is and I wig out. This time we had a favorable result, no admittance, no UTI, pulse ox high 90’s, keep watching her fever, push fluids (praise to feeding tubes), increase her breathing treatments, and as much rest as possible, and I still wigged out.
I’m not complaining about this and I’m not raising a red health flag, I am trying to explain what happens to me and why I think I have PTSD, Post Traumatic Seizure Disorder. I am not making light of this or trying to be funny. Every single time that Ryan is sick, needs to go the ER, has a procedure, or a new surgery I go down the rabbit hole. I get completely irrational, tense, and cry. I am so panicked and scared that it’s all starting again, that they will tell me she has more birth defects, more brain damage, new seizure types, that she is going to die and no amount of love that I have for her will save her. That we can do nothing to help her, that there is no Doctor or medicine that will help. I freak out that if we bring her in, that the other shoe will drop and that I know will be the end of me.
I can’t even share that without starting to sob. When I feel this way I react horribly, First the mania and panic, then I pick a fight with anyone who I come across, next I run away from the situation and leave Micah holding the bag then I just zone out and become completely passive. Once the situation is over and I believe that we will be ok, that Ryan will be ok, I will inevitably bounce back with tears and apologies. I hate that this happens and while I don’t deny that I need some therapy and help dealing with these feelings occur, I don’t hold a lot of hope that they’ll ever end.
I don’t think that most people understand what it is like to feel this panic, unless sadly they too have had a very sick child and they keep getting bad news, after periods of hope and happiness. It isn’t the fever. I know that kids get fevers, I truly believe that she does just have a virus, this time and she will 100% recover. But I still wigged out, so I am going to look in to therapy specifically for PTSD. Because even if everyone forgives me, and understands or extends allowances, I don’t want to do it anymore. I don’t want to feel like that anymore, and I don’t think that Yoga and giving up soda is going to cut it.
First off these are not the best photo’s. I should have changed the camera’s setting and I didn’t, so blurry is what you’ll see in a second. As I mentioned a while ago, Ryan was asked to be in the Easter Seals Fashion Show fundraiser. The event was on Saturday, and she did great. The whole morning I was so anxious, I was in a fog, half participating in conversations and half worrying that Ryan would run off of the runway, plop down, or end up being carried the whole way. She did great! She did plop down a time or two, but for the most part she ran in a straight enough line right down the runway. Micah chased her the whole way, never looking away from his Bug. She was so darn fast that the announcer barely had a chance to read Ryan’s bio.
We were so honored to have so many supporters at the show for Ryan. We filled a whole table, and when a few of our friends could not make it, they donated funds to Easter Seals anyway. So, so, so kind, Thank You, we love you.
At times like these I think of something a fellow special needs Mom told me. Her daughter is now in eighth grade, and has opinions about her outfits, hair-style, and activities. She is a wonderfully willful preteen and totally typical in that. Her Mom has told me that she wished she had dressed her little girl up more when she was tiny, that she had taken more formal photo’s, and participated in more events like the fashion show, because now she is sad that her daughter has lost interest in dressing girly and that those days may be gone forever.
So we’re all in. I don’t know when Ryan won’t want to do it anymore, but I know that the day comes for a lot of parents whether typical or special. So until then we are wearing tutu’s and blissfully going down runways as often as we can.
My gal loves her pool PT. To get over this need for the stroller in school, I am diligently walking Ryan in and out of places. I am holding her arm by the armpit and my other hand is on her back so I don’t pull her arm out of it’s socket, when she inevitably plops herself down to the ground to be free, or to perhaps feel or even lick the ground (pool tiles must have tasted good today). This kid. Anyway I am walking her more and more and she is improving.
When we got to the pool today for PT, I knew that if I let her walk I’d have a hard time keeping her away from the water. We did however have a little bit of time so I kicked off my Toms (the shoes of stay at home Mom’s everywhere) and I let Ryan play in the shallow end of the walk in pool. She was so happy and so chatty. She isn’t afraid of the water at all, and I had pants on so I couldn’t let her fully experience it but, the moment was so blissful. She was smiley and so verbal. I wish that we could afford to go to the pool all of the time. I wish that I was more comfortable in a swimsuit. I haven’t had a soda in four days, so here’s hoping for next summer.
I am going to get on it and sign Ryan up for some lessons, once a week PT in the pool isn’t exposure for this girl. Three birds great extra PT, great Speech output, and she likes it. Cognitively she may not learn much, but the fun will be in trying, and in buying her more swimwear!!!
A stroller has been procured. I have moved on to acceptance on the stroller in school front. My Mom helped tons by getting the stroller for Ryan and talking me off of the ledge. Thanks Mommy, I still need you I guess.
I just have to tell you how kind people are. Before my Mom bought Ryan the stroller I posted on this garage sale site that I was in search of a stroller. I was expecting to pay for it, I just wanted to search in a specific way for an umbrella stroller with a chest/arm strap. Well, the folks in our “new” town were so kind. Three strangers offered me their strollers for free. Can you believe that, such kindness. I didn’t even play the epilepsy or brain surgery card, I swear.
My Mom surprised us with the stroller, so of course I refused the offers and thanked them profusely. Seriously how kind were they though, we really are a very lucky family and so blessed in so many ways.
So I’m going to keep working on paying the karma God’s back. I like having a positive account, you just never know.
It was Dot day at school on Monday. Of course a fashion challenge that I decided we could meet in spades. When I looked for a dotted outfit for Ryan, I realized that just by shopping her closet I could make it dot week, so I did! I was kind of hoping that there would be a contest or a parade or something and that my Pickle would win, but there wasn’t it was just Dot Day.
Here is Ryan on Monday (her dottiest outfit) and here she is today! Have a great weekend, I think we might check out a story time at the library and some other “typical” kid activities!
I am very, very invested in Ryan’s outfits. As you know or have discerned I am overly interested in Ryan’s wardrobe. I feel very judged for this sometimes, and I’d like to explain myself.
On the surface it might seem like I am being ridiculous for filling her closet and drawers, for ironing her clothes, for coordinating her socks with her headband, for even trying to get her to wear a headband or a hair bow. You may suspect that I spend too much money, and wouldn’t our money go farther for her therapies and co-pays if I just stopped caring so very much about her appearance. You may think that I’m frivolous and a snob, that my priorities are out of whack. That I am not a proper modern feminist and that I am teaching Ryan that the only thing about her that matters is what she looks like.
You are wrong. First I have always cared about clothes. I babysat my life away from seventh grade until I could get a job (in a clothing store), and I assure you that every penny went to new clothes for me. It’s what I’m in to, it’s what I’ve always been in to, it’s just me. And I love a bargain more than most people, you will never see me more happy than when I get Ryan stuff at a consignment store or a garage sale. I also give all of Ryan’s old clothes away. I could sell them and I would make a decent buck, but I would rather pay it forward and share her adorable outfits with her younger friends or we donate them.
Today it kind of hit me, as I was explaining myself and defending her outfits to her new PT (who was not giving me a hard time, I just feel like I have to explain myself about everything)
It was when I was talking to the PT today at school drop off today, she sought me out to ask me to bring a stroller in to school for Ryan.
At school they are struggling with her endurance and walking to and from the motor room and the gym. Ryan can walk, but Ryan struggles with directions, endurance, distraction, and licking or touching everything along the way, so sometimes a stroller is a necessity. I hope that she overcomes this need and I hope that I am not strolling her around in an adult size special needs stroller for the rest of her life. But I may be, and that is our reality.
So when you see Ryan and she is adorably turned out, please know that I am barely holding on and trying to have my little girl, look a little bit like the dream of a little girl I had for so many years. My little girl has never said Mommy, Momma, or Ma and meant me. She does not come up to me and kiss me or hug me, she does not reach for uppy, and want me to hold her. These are things that I long for, that most of you may take for granted and for me they may never happen. But the outfits, yeah, I can make that happen.
Ryan being so cognitively delayed, in this instance is in my favor. She will wear whatever I put her in. She does not have a preference, she does not have an opinion. She is like a three month old. I put her arms in and out of her sleeves. I put her legs in and out of her pants. I have to stand her up, support her and pull up the pants, so yep sometimes they are really ruffley, because they make me happy, and they certainly don’t hurt her.
I am trying to bring a little bit of joy in to my heart, because sometimes I need it. I do it for me, not for you, not to make you feel like a lazy Mom. I do it for the thirty some years I’ve dreamed of having a little girl. I love my girl so much, but our reality is sometimes hard for me. Seeing your amazing children acknowledge you, run up to you after school, cling to you before school and say bye, bye is hard on me. I can’t get Ryan to hand me anything, say a word, follow a direction, and now she can’t walk to the freaking gym at school without a stroller, her legs work, but her brain struggles. So you bet your ass that she is as well dressed if not better dressed than typical children.
Fashion show, Fashion show, Fashion show at lunch
I want to talk, but I don’t know what to say. We are chugging along. Ryan is doing well in school. She hates wearing the AFO’s and tries to take them off all of the time. She has learned how to do Velcro, so it’s exciting and annoying all in one. Her cough is back, but it isn’t a cold. It’s her esophagus not emptying properly in to her stomach (again). So we are getting some tests and possibly some dilations done soon. Depending on what they find, we may or may not be facing her sixth major surgery and thirtysomething sedation. Hip, Hip, Hooray.
Hopefully the dilations will do the job for a long, long time. She is almost or should I say only 24 pounds now, so you see we really need to get this in control. We still use the feeding tube, but her reflux is so bad if we push it, and she wraps the overnight feed cords around her head or chews on them when she sleeps, that it isn’t an option. I don’t think most kids who need feeding tubes are as active as Ryan is, or I think that most GI’s who come up with these ideas do not have a Toddler who has a feeding tube. Either way we are still doing gravity feeds a few times a day, and we are doing our best.
I have made some new friends. I’m in love with the two youngest kids (of the five) who live next door to us, and we hang out a few times a week now. The third grade girl and I are working on finishing up the play kitchen renovations and the first grade boy is just working on being awesome. Ryan loves having them come over to play. She may not play directly with them, but she is smiley, and more verbal and it’s just awesome to see. I’m in love with the interaction. Sometimes I need to feel like I am a good Mom, because I’m fun and kids like playing the silly games that I make up, and laugh at my silly jokes. So as I said I have made some new friends.
Ryan was asked to be in the charity Fashion Show for her old therapy center. It’s a pretty awesome thing. I will definitely post photo’s when I have them. Yes, the outfit and accessories are adorable, and I have obsessed about them.
Micah and I are headed out to CO for our anniversary (almost five years). Only a quick weekend, but I am beyond excited. I really want to one day live in CO, and this trip will be just the two of us. I am also really excited because there is a world renowned sensory processing children’s therapy center, and I am hoping that we can get an appointment to check it out, and maybe steal some ideas for the sensory gym I dream of building for Ryan one day.
We have decided not to move back to our house. It has come down to the school district and their special needs programs. Where we are living now is a better district, and is more robustly funded for special needs children. So the best thing for Ryan is again the answer. It’s the right decision, but Micah and I did not come to it easily. We’ve spent so much time and money to make our hundred year old bungalow an amazing house, and we were almost to the point of the “fun stuff”. Like a kitchen remodel and a finished basement. The asbestos is gone, the foundation is now solid, the flood control is intact, now all of the windows that didn’t open have been replaced, and the list goes on and on. Que Sera, Sera right. We are selling the house first, and then we will look for a house here. We are thinking of a ranch, with a basement. Fingers crossed that we find one, in the super awesome quadrant of town that we dream of one day living in.
At least it will be a whole new house for me to decorate!!!