Day 12. Year 2019

     Good morning. Sometimes I think about what I want to write randomly throughout the day. But then when I sit down, that stuff just doesn't want to come out. Some days I just want to be super honest. Today's one of those days.

     I know I should be {and I am} grateful for all of the blessings in my life. And I should focus on the positive {and I do, or at least I try to}. But some days, you are just sad, you know? And maybe feel sorry for yourself a little too much. Have a full-fledged pity party for yourself. And I couldn't shake that this weekend. So last night I went to bed, thinking,.... It's a new week, a fresh start, get your head back in the game.

     I woke up this morning, grateful as always, to see another day. I may have a few more kinks in my body as it ages, {ugg, I slept on my neck wrong the other night and still can't turn my head without it hurting, and ugg, stupid sciatica acting up, my whole left side butt to foot hurts, and boo, my stupid right knee, and leg from dislocations and my blood clot 2 years ago} but nothing that a few ice packs {well, a whole ice bath would be nice}, a bit of time just for myself, and a fresh cup of coffee can't improve.

     I thought about how lucky I am, Mark and I have 3 amazing kiddos. I love my family and I love my life. And there is nothing more fulfilling to me than being their mom and being Mark's wife. Easter was a bit quieter this year. And maybe that's part of what got me sad. We are a very close-knit family. We do a lot of stuff together. And Mark and I have always been grateful that the kids seem to want to hang around us and do things together. Vicki has always liked the number 5. She counts a lot of stuff and will ask for 5 of certain things all the time. For example, 5 grapes... 5 pieces of sweet and sour chicken from the Chinese place we order from, 5 meatballs on top of her spaghetti. I always wonder if she loves the number 5 so much because it brings her comfort. And makes her feel safe. Why? Because when we do anything, go anywhere, she always says, "Mommy, Daddy, Joey, Vicki, Ally". 5 people. Her family. I like to think we make her feel safe and secure.

     I knew this year would be a hard year because 5 became 4 for a lot of things. As much as I want to slow down the process, I can't stop it. And my babies are growing up. It seems like it was just last year that we were making cute Easter crafts, counting down the days until we could color eggs and go see the Easter Bunny, attend an Easter egg hunt... And this year Joe started college, and he's not here for a lot of things. And I miss him. And Mark misses him. And Ally misses him. And Vicki, she misses him. The last few years have been hard and it was difficult to get Vicki in and out of the car, so I bought Joe an Easter Bunny costume, and he dressed up, hopped around, and took pictures with Vicki and Ally. He brought a lot of joy and smiles to a lot of people wearing that costume. He would stand at the bottom of our driveway and wave at the cars driving by. So many people would honk and wave. They would circle back around smiling and laughing, and many people would get out and ask him for a selfie. People walking their dogs would stop and ask for a picture with the Easter Bunny. But this year, the bunny was conspicuously missing. Joe has finals next week, and it just didn't make sense for him to come home for Easter this year. All of his friends were staying at school too, so at least he wasn't alone. I packed up his Easter basket and sent it in the mail to him. We gave serious thought to driving up to school and have Mark knock on his dorm room door in the bunny suit. But we didn't. We loosened our grip a little bit and let him grow up some. Maybe that's why I was sad for some of the weekend. I've done pretty good with him being away at college, but this was our first big holiday without him. It happens to everyone. I just wasn't quite ready.

     But it's okay. The girls and I tried out a different way to color Easter eggs, with rice. Vicki actually did well adapting to the change, and for a minute she enjoyed shaking the bag of rice up with the egg in it. The eggs turned out super cute, had a speckled look to them, and it made for very easy clean up. And Ally put on some bunny ears and hid eggs outside for Vicki to find this year. One thing I've loved seeing is the deepening and maturing relationship that Ally and Vicki have come to throughout this transition year. {Tomorrow I will focus on that newly deepening sister bond}.

     So, I'm sure Joe not being home for Easter had some effect on my sad mood. But, besides that, sometimes it's not anything in particular. You know? It's not a particularly difficult season right now with Vicki. Oh, things and hard and exhausting, don't get me wrong. But there are some very specific times I can look back over the years and think, oh, my God, how did we get through that? Like at the worst of Vicki's transitions, when every single transition was a fight with Mark, where I had to call the sheriff's department and ask about how to make sure we weren't called in for trying to abduct Vicki. That's how scary it was. No, I still can't get Vicki into and out of the car without Mark. And that's tremendously difficult on all of us. And we never know exactly how long it will take to get her out of the car, or how much of a fight it will be. And we still really can't "do anything" "normal", whatever that is. We have to think and plan and trade places and make sacrifices for things that many people don't even think about. And another time, when I was standing with Vicki in the bathroom before she went to bed, for 2-3 hours at a time because she couldn't move. That was hard. And exhausting. And the years when I had to clean her sheets up to 2 x a day, and her floors, and her. That was hard. Do all of these things still happen? Absolutely. But, thankfully, not with as much frequency. So I get a break occasionally.

     So, why? Why are there some times that I feel such overwhelming sadness? Mark said it best the other day when we were talking about it. Baby, Vicki is almost 17. And that's all he had to say. Because he was absolutely right. She's almost 17. And as I talk about our kids growing up and the dynamics of our family changing, it's always in the back of my mind. She's almost 17. That means she's almost 18. That means 21 is just around the corner. I need more time. We need more time. She's almost 17. And so many of the things that I just talked about are still occurring. We've spent countless hours researching, countless hours at doctors and therapists, a shit load of money that we don't have, and I just feel like I need more of all of it. Because I'm not helping Vicki enough. Because we still can't just get in the car and get out somewhere on a whim. She can't get up in the morning and get ready by herself. She still has accidents so many times per week. The other day was a particularly difficult accident in the living room, and after it was all over and cleaned up, Mark asked me if I was ok. And then he was like, of course not. Why would I be ok? She is almost 17. And it makes me so sad for her, and for me, and for all of us. And I know no one is to blame. But it's hard not to place that blame on yourself. 

     We go through all of the tests and procedures and after enduring a particularly hard colonoscopy prep and post-op, I guess in the back of my mind I still wish... oh, this will do it. We will find out what is wrong, and we can fix it for Vicki. And then this morning after taking some time for myself, drinking some coffee, thinking about being positive and everything that I was going to accomplish this brand new week.... I go back upstairs to get Vicki up for school. (I have a monitor that I keep with me, that projects on my phone, so I can hear and see Vicki at night in her room). But I can't smell. And sometimes, you can't smell something until you go up the stairs into the hallway by her room. And she never called out for me or said she had to go or moved at all under the covers. And yet, there was another accident. And yes, some days I have a pity party for myself. Some days it's hard to get that positive outlook focused and ready, but I was doing just that this morning. Until I smelled it. And then, it's like, all the wind goes out of my sail. And all my positivity and plans go up in smoke.

     Don 't worry. I'm pragmatic about things. I focus on what needs to be done. I was able to clean up her room, and her sheets, and her, and take out the garbage and open the windows. And I got her ready for school, and she got on the bus. And yes, my positivity took a hit for the day, and I let a little sadness creep back in. And that's not what I had planned to do on a Monday morning. But, we all make it through. And it's ok to get frustrated and sad. And I give myself permission to grieve and mourn. I know that sounds strange. But grief comes in many different forms and waves. I rode this one. And I got up and dusted myself off. Because that's all any of us can do. And then I adjusted my to-do list, thought about things I am grateful for again, and allowed myself another cup of coffee.

    PS. Number 1 on my grateful list right now? This. The opportunity to self-reflect and self-analyze. And let myself feel. Thank you for reading. Thank you for listening. And I wish all of you the best anytime you have to pick yourself up and dust yourself off. Love you all. xoxo
   

Day 11. Year 2019

     It's amazing how tired going to doctors and sitting at hospitals make you. I didn't even have the procedure, and I've been exhausted for the past 2 days. All of the prep work and planning and lack of sleep and worrying. After a big day at a doctor with Vicki, it kind of feels to me like that exhaustion you get after opening presents on Christmas morning, or after a big event you were preparing for. The adrenaline seeps out of your body and you are left feeling rather lethargic and just done. That's me today. I can't imagine how Vicki feels. Well, I kind of can, because she stayed home from school today {she looked absolutely depleted last night and when I asked her about school today, she very adamantly proclaimed,  "No school on Friday. No school. Vicki rest and relax" - which is what she says when she doesn't want to get out of bed. So that's what she did today. She rested and relaxed. She still looks exhausted, but hopefully, we will have a nice calm weekend at home. Going to color Easter eggs tomorrow {thinking about trying a new way - with dye and rice this year - we shall see how that goes}. I have the old stand by PAAS egg coloring kit just in case.

     We should get the results of all of the biopsies the GI took in about a week, to a week and a half. And then, crossing my fingers, hope we find something that we can treat and help Vicki feel better. I never want to hope for something bad. But I also hate putting her through all kinds of tests and procedures and have the end game be - well, everything looks normal, who knows what's going on. Come back in 6 months and we'll see how she's doing.

     You know how I talked the other day about how difficult it is to have someone else get Vicki up and ready in the morning? In all fairness, there really has been a chance to try something/someone different for quite a while now. And, although this may sound bad because I know I should try to decrease some of the load on me, all the while trying to help Vicki gain more independence and get used to different things... it's also kind of 'easy' when we have a system that works. Sometimes the OCD and the sameness of some routines actually just lessens the burden of difficult behaviors and enables us to get Vicki to do some things that have been a struggle... such as get on the bus, go to school, etc... It's all about perspective. Anyway, I've had the opportunity twice in the last 2 weeks to have help in the morning, when Vicki didn't have to go to school. So, we tried it again. We took a portion of her morning routine and switched out people. And, although it was really hard the first time, the second time it went a bit better even though it took a long time. And I am grateful. You know? To be able to step away for a few minutes. And I know it's good for Vicki. But then, today, it's as if Vicki has already tried to create a new routine. And although some of that is good, it's also very, very bad. Because for the most part, I can't get help at the time I would need to get Vicki up in the mornings. And things get slower, and she reacts differently to different people. And, she establishes routines so quickly. So, what was working for me with Vicki before, now has been 'messed with' and it's no longer working as well. It's all perspective. What needs to happen when and how difficult it is going to be. So, when Vicki starts not being able to move through a specific step in her morning routine because she just started a new routine that includes that person in that environment.... you can see where the difficulty lies. If that person can't come at that time, which is usually the case, then we can no longer move through the morning routine in a timely fashion, and then there are delays with the bus... and then she starts refusing other things.... It's really hard to know what to do.

     I'll give you another example. As I've said before, Vicki takes a special needs bus to a private day school about 45 minutes away. She has her normal bus driver and normal aide. She is used to the routine. She is used to them in that environment. From August until March, Vicki had to use a wheelchair because of her broken leg. So she used the bus lift with her wheelchair. Before she broke her leg, we had struggled with getting off the bus, but we had found something that was working... I would hand up my phone to Vicki's aide with a minute timer on it. When it would go off, she would get up. It took us a long time to find the 'thing' that worked with Vicki. And then she broke her leg. And she used the wheelchair lift. This school year we had a new aide with the bus driver. And she had only worked with Vicki using the lift. When Vicki got the last of her casts/boots/air casts off, I had posted on my fb page, how Vicki just stopped cold turkey and started walking again, even though we had been trying to fade the wheelchair for 2 months prior to that.

     The first day she walked on the bus again I was so nervous thinking we would have to start with the timer to get off the bus again. But, amazingly, we didn't. Vicki had established a new routine with her aide, that didn't include the timer delay we had from the year before. It's all Vicki's comfort level, the environment, the people, and the really hard part... it could be something so insignificant that that person does or says that flips the switch for Vicki that allows her to complete the transition. And after that first day walking again, I held my breathe. And that whole week she transitioned beautifully to and from the bus. And then the next week, and the next. And I let out a sigh of relief. Fast forward to this week, it was spring break week for our local school, but not Vicki's. The bus driver and aide that Vicki was used to had the week off. And it was a different bus driver and aide on Monday. And I held my breath again. In the back of my head, I was preparing. She got on the bus ok, but I could tell she was thrown for a loop and she seemed very anxious and uncomfortable. Then the difficult transition off the bus at the end of the day... I hadn't had to use the timer since before she broke her leg with a different aide. But I could tell, there was hesitation. And I can just tell with Vicki- sometimes it's just her body language. But I can tell when she is hunkered down and isn't going to move. This was one of those times. So, even though I didn't want to, I brought back the timer. It didn't work. I tried some of the other tactics/plans we have in our little toolbox of behavior modifications. Nope. Nothing. After 15 minutes, she finally got off the bus. Not as long as it could have been, definitely, but not good. And I spoke with her teachers and her behavioral therapists, and we discussed more strategies in case it happened again. And it did. On Tuesday. And the strategies didn't work. But again she got up from her seat and got off in under 15 minutes. On her own terms. And oh, how we wish we knew what that term was. She hasn't been back to school since because of the medical issues... and then next Monday I'm not sure what team will be on her bus. Were the behaviors of those 2 days enough to create a new routine that will be hard to break? Or will the hesitation magically go away? I know 15 minutes doesn't sound like a lot of time. NBD right? It is though. It's a very big deal for Vicki. Because the bus can't stay forever. And 15 minutes can easily turn into 45 minutes. Then an hour, or 2. I know I've mentioned before we've waited for 8 hours before for a transition {not with the bus, but with our van}.  It's stressful. Definitely. And can become very quickly something that could end her successful transitions on the school bus. It's like dominos falling. One thing changes, that sets in motion another, and another, and before you know it, you look back and think, how can we put it back together again?

     I'm going to head out now before we lose power if another storm comes through. Sorry, my writing is so sporadic and all over the place. I suppose my mind is like a set of dominos too. Once you knock the first one down, I just keep going... :) Much love to you all. xoxo



   

Day 10. Year 2019

     Changing gears again this morning. Remember on Day 4 this year when I posted about poop? Thought I'd do a crappy follow-up to it. I had talked about being the coolest chemist when I was collecting her stool samples. The most recent stool sample that we had collected showed some abnormalities and Vicki's GI called me the other day to talk about it. We've done the same stool samples in the past, and they had been negative. This time a few the tests came back {for those of you who are poop connoisseurs her calprotectin was significantly elevated, along with a few others}  not so great that raised concerns again for both Crohn's Disease and ulcerative colitis. So, the GI wanted to schedule a sedated colonoscopy and upper endoscopy as soon as we could. Fast forward to today. Today's the day.

     Vicki has had 2 upper endoscopies done before with biopsies taken to keep tabs on her reflux and check out other issues. She has never had a colonoscopy done before. He decided he wanted to do both at the same time, to lessen the number of times she has to be sedated {because we also have a sedated MRI looming on the horizon}. So, in the past 2 days, I've raced around trying to get things scheduled and taken care of. Not only prepping the insurance and pre-op stuff with nursing and the doctor by phone, but also making sure I canceled all of the other services she gets on a daily basis and coordinated Mark's work schedule. It's crazy how many calls I have to make to get that done. Anyway.

     I had to keep Vicki home from school yesterday to do the prep for the colonoscopy. I was really worried about it. And, in true Vicki fashion, she rocked it. I talk a lot about how difficult things are when dealing with change. One of the exceptions, it seems, is when we have to do stuff with doctors. I know deep down that Vicki knows that doctors are trying very hard to help her feel better. I know she feels crappy a lot. And when we talk to her about doctors and hospitals, it's like a switch is flipped in her head, and she can do the things that are different. She knows the name of her GI doctor. That's how much we see him. She will say "belly hurt, Dr. ....... please". And it breaks my heart and makes me so proud at the same time.

     So, we did the colonoscopy clean-out yesterday. She rocked not having her "yogurt medicine" in the morning. {Usually, I give her the omeprazole - her reflux medicine, mixed in yogurt before she gets in the shower}. She was able to move on when I told her it was because we had to do different medicine for the doctor. She knows that when we have to drink Gatorade, she wears a diaper, and she went and got a diaper out. We couldn't do her applesauce medicine {she can't swallow pills, so I crush them, or open capsules, and mix them with applesauce}. She was able to take her clear liquid Keppra and Zoloft though. But she couldn't have her normal breakfast, so I made yellow jello and apple juice the most exciting thing in the world. And she did amazing. Then we started the Gatorade/Miralax clean-out. 8 oz every 30 minutes. And she rocked that. I don't think she quite understood why she couldn't eat though, and I felt really bad. She kept asking for dinner. I offered her a few clear liquid choices but she got mad. I would have to. Eventually, she asked for a popsicle and resigned herself to that. We were up really late last night because it took a long time for the magic potion to start working. She will never tell me when she has to go to the bathroom when she is doing a clean-out, so I have to watch her really close for signs and try to take her at appropriate times. She refuses to get up a lot, so it's a bit of a battle. But we didn't have any accidents last night or this morning so I will call that a win.

     I have to run now though to get her up, we have to be at the hospital pretty early today. If you could just keep Vicki in your thoughts today, I would appreciate it. Anytime she gets anesthesia and has a procedure done, I get nervous. I will post later to let you all know how it went. I hope that the doctor is able to find out the cause of the shitty issues she is having, and we can put a plan together to help her. I would love for Vicki to not have to ask for her GI doctor because her belly hurts. Much love to you all. xoxo

Day 9. Year 2019

     Sorry things got kind of busy yesterday and I didn't get a chance to finish my post and publish it. Here it is:  As I said yesterday, I wanted to give a few examples of how autism teetered over the weekend. Both by keeping the balance and by falling off. Let's start off with a good story, a really good story, the kind of story that gives me hope and in a difficult world, restores my faith in the goodness of people. Wow, I talked that up quite a bit.  Hopefully, I can deliver. :) 

     This was Ally's first official modeling job, walking the runway in a multi-designer fashion show. Of course, we all wanted to be there to support Ally. When the kids were little, we tried our best to do everything as a family and to give the kids as 'normal' of a childhood as we could. We did ok for a while. But then it got really hard. Around the time Vicki was diagnosed with PANDAs and her transition anxiety became more prevalent {especially in getting into and out of the car} we started splitting up activities more. Mark would take the kids to their activities and I would stay home with Vicki. Sometimes it was just easier that way. But we all missed spending time together, we are a pretty close-knit family.  Anyway, when Mark was home on the weekends it was a little easier, but trying to get the kids to their activities during the week was almost next to impossible. Thankfully we have a wonderful support system of friends who stepped up to help out. But it's really hard to ask for help. And it was hard to miss practices or be late for practices. No matter how good the plan was, things never quite go as planned, right? Eventually, I noticed that the kids weren't joining as many clubs or activities, and they weren't asking to do as many things. And that breaks my heart. My kiddos saw how difficult it was, and tried to lighten the load. Fast forward to this year. With Joe going off to college, and Ally being home-bound for school with her medical issues, it became really important to us to not isolate her even more. So when Ally became really serious about wanting to model, we were going to do everything we could to make sure she was able to get to whatever activity she needed to... whether it be a casting call, a fitting, or a photo shoot. So.... the fashion show this past weekend.....

     I have a habit of looking at a specific situation and thinking of all of the possible things that could go wrong. Some may call me pessimistic. I call myself proactive. Because one of the things autism has taught me over the years is that you can have the best laid out plan, and it can still go wrong. The worst case situation? You better damn well plan for it. So we try to. The tickets to attend the fashion show were very costly. And we were going to buy 5 tickets - one for Mark, one for Joe, one for Vicki, one for me, and one for an aide for Vicki. When I called to order the tickets for the show, I spoke with the coordinator. I asked her a little bit about the timing of the event, what would happen when. And I asked her about the layout of the tables and such. We talked for some time as I explained that my daughter has autism and sometimes things are very difficult for her. We wanted her to be a part of this special day for Ally, but also didn't want to disrupt the event in any way. She was so kind and asked many questions. She explained the timing of the events that day and said she would check on a few other things and call me back if she could or just meet up with me the night before at the walkthrough at the venue so I could see how things were set up. 

     We were 10 minutes late to the rehearsal the night before, not because of autism this time, but because of stupid traffic. Oh northern VA traffic! The coordinator met up with me as promised, and immediately grabbed onto my hand and held it as we talked. It was a sweet gesture. She showed me around a bit, and then told me that one of her immediate family members had a disability and remembered how difficult it was to go places and do things together. And then she told me that she got us the 5 tickets at an empty table right by the back door so if we had to take Vicki out, it wouldn't be very noticeable. And then to my complete shock, she told me that she got the 5 tickets donated to us!!!! I was so taken aback by such a generous gesture. I actually let a few tears slip down my cheek. This was not something I expected or asked for. I simply wanted to plan for the worst, and Mark and I knew that we might be wasting a lot of money if some of us had to leave with Vicki, or if Vicki couldn't overcome her anxiety to get in in the first place. But that was a risk we were ready to assume. And this wonderful lady just made the monetary burden disappear.  

     The next morning of the fashion show she found me and grabbed my hand again and said she was so happy to have us there. We hadn't brought Vicki in yet, and she told me to find her when Vicki came in so she could meet her and hand us the tickets and seat us. We did. And she did. She was very busy that day making sure the event went as planned. And not only did she take time out to focus on our family, but she also did it with a gentle smile and such kindness. I will never forget her gesture. And with the support of wonderful, kind people like that, and the support of our aide for Vicki, and being together as a family, we made it. We were able to enjoy Ally's fashion show together. With layse black cat, Mark's ability to calm her down and "squishy" Vicki {as she says when she needs some deep pressure and input}, oh, and the amazing chicken meal that was served, along with THE best cheesecake I've ever eaten.... We made it. It helped that Vicki could focus on each of the courses, the salad, the meal, the cheesecake dessert {and quite possibly another slice of cheesecake from the plate that wasn't used next to us} during the part of the program where there was a lot of talking. We were even able to get Vicki outside and meet up with Ally to take some pictures. 

     Just as a quick aside, I want to talk about Ally and Vicki's relationship in more detail, but I want to get this posted so I will save for next time. I also want to share the not so great moments from that day, the totter. But this was just too good of a story to end on. No reason for any sadness today. I hope everyone gets to experience the kindness of humanity today. Whether it's a grand gesture, like this coordinator of the fashion show demonstrated, or a smaller gesture, a smile, or someone holding the door. Showing kindness and empathy to others, it makes such a difference in this world. Much love to you all. xoxo

Day 8. Year 2019

     I think I see a trend here. Weekends have been really hard for me to post. Sorry! Sometimes I find it hard to create a balance. Ok, most of the time I find it hard to create a balance, I find myself more often than not on a teeter-totter, at one extreme or the other. It's darn hard to get that thing right in the middle, ever. I find that to be true with my kids too. Especially when one kid has such extreme and unique needs. This past weekend my teeter was most definitely focused on Ally. She had a final fitting and stage practice Friday night for her first go at modeling in a fashion show and walking the runway. Saturday was the fashion show near Newport News, followed by an early birthday dinner at Kobe, and yesterday was Ally's 14th birthday. So, we all revolved around Ally this weekend. Joe came home from college to celebrate with her too.

     Time and attention are two things that are very hard to balance. Kids have special events that require more time and attention at very specific times in their lives. So you jump into that and focus on that. Not many kids want to willingly share the spotlight for their special occasions, but there has to be some give and take all of the time. And for the most part, my kids give and take rather well. Joe's graduation - was about Joe. Vicki's 16th birthday- was about Vicki. Ally's Confirmation was about Ally. Joe's Eagle Scout Ceremony... Ally's NJHS induction.... you get the picture. One of the hardest things though is that for Vicki, a lot of the "special occasions" revolve around medical stuff. It stinks for both Vicki and the rest of the family. We try really hard to have other types of celebrations for Vicki, but the last few years have been very hard.

     That damn autism is a spoiled brat. It constantly thinks the world revolves around it. That all of the time and attention needs to be focused on it. Vicki's home 48 hour EEG - was about autism. Vicki's upcoming MRI - about autism. Vicki's GI cleanout - damn you autism and related conditions. Vicki's sleep study - enough already autism. We freakin' see you. Stop hogging the spotlight. Stop stealing the whole teeter-totter. Just stop it. I just want to put autism in a time out. But there is no time out from autism.

     If you look at the pictures I post though, you may think, hey, I don't see autism in the picture. Everyone looks so happy. Look at everything they can do together. It doesn't seem that hard. But, believe me, it's there. I sometimes liken autism to a chameleon. Sometimes it blends in so well to the surrounding, you almost don't even see it. And we work really hard at that. We want you to see Vicki, not autism. The amount of behind the scenes works that it takes to get autism to blend in is absolutely mind-boggling to me. It overwhelms me. I can't imagine how it overwhelms Vicki.

     I'm going to cheat a little bit... and call this post done. I will write in more detail later about some of the ways autism was able to blend in this weekend with the help of so many people. I will also write about how it was not able to blend in at all. It's one of the hardest balancing acts we've ever had to do. But I believe as a family, we do ok. Actually, more than ok. Everyone gets their moments. And we all hold onto one another to balance. Sure, we fall off. But we dust ourselves off and get right back on. Much love to you all. xoxo

Day 7. Year 2019

     I had another meeting yesterday. The amount of meetings you have to have in order to continue receiving needed services is sometimes staggering. Between the many different services Vicki needs, it's hard to keep up with what needs to happen when. Triannual meetings. Yearly meetings. Quarterly meetings. Meetings when difficult situations arise. Meetings for this, meetings for that. Meetings to schedule a meeting.  Daily communication briefings. And that's just for 1 service. Another one has 3 different levels of providers that I have to meet with, daily, bi-weekly, monthly, quarterly and yearly for reviews. And another service provider monthly, quarterly, yearly reviews. Different types of questionnaires each time. Discussions of goals, of behaviors, of plans... You get the picture. Anyway, one of the questions on one of the numerous questionnaires {where you have to answer always, sometimes, kind of, maybe a few times, never, who knows, I wish I could ask Vicki questionnaires} always gets to me. It's the question about self-harm. That question hurts.

     In the past, and I would venture to say some of it was a side effect of a medication, she has had some aggression/self-injurious behaviors occur. And those were hard. Mark had to basically hold her down so she couldn't hit herself in the head repeatedly. Those times were so difficult to watch. And there have been other times. Where it comes out of the blue. She has bitten herself before, and she has taken her hands and hit herself on the head, both open and closed fists. Those times are hard too. And I'm grateful they don't occur frequently. But now I have to answer the self-harm question as occurring daily. And I am heartbroken every day because of it.

     The only thing that I don't mind about trichotillomania is saying the word. It's kind of a fun word to say. It kind of rolls off your tongue. Besides that, I hate this disorder. Hate it. Hate it. Hate it.  And Vicki has been dealing with it since October 14, 2016. That's the day she started pulling out her eyelashes. At first, it was just the upper eyelashes, but it soon became the lower ones too. And that was hard. And then on May 21, 2017, I went in to wake her up for school. And I looked at her. And I knew something was different. And I just looked at her. And then I realized. And the heartbreak of realizing that she pulled out her entire eyebrow almost made me throw up. And we tried so hard. We slept in with her that night. We blocked her hand every time it went up to her face. And I cried. And we took turns. And two days later she got to her other eyebrow anyway.  At first, it was just half of it. And then it was all of it. It's like, I thought if I could just save that little piece of her eyebrow, then maybe it would be ok. Maybe it was a fluke and she would stop. It wasn't and she didn't.

     I don't consider myself to be a vain person. So, I don't think my heartache is a purely superficial thing. But I would be lying if it wasn't a tiny part of it. It's everything wrapped up into a pile of little hairs that I find on her bedsheets. The pain that she must be feeling. Both from the actual pulling of the hairs to the compulsion to have to do so. To the level of stress and anxiety that she must feel to do that to herself day in and day out. A few tears are sliding down my cheek right now just thinking about it. I want so badly to take away the hurt and pain and feeling of such anxiousness for Vicki. As a mom, I get that lump in my throat. I am heartbroken that she is hurting. And I can't seem to help her. And it's a daily reminder. Every morning when I go in and wake her up it shocks me all over again. It never gets easier. Every damn day I draw her eyebrows on. Every day I have to hold back the tears as I try to get a decent arch in the brow. Every day. The level of sadness I feel is overwhelming, I can't even imagine how Vicki feels.

     Her eyelids are significantly swollen at least 2-3 mornings a week. They are red sometimes. She gets more goop in the tear duct areas now. Eyelashes play a crucial role in protecting the eye. And hers are gone. And that increases her risk of infection. Some days I see a little bit of regrowth. I'll see a few lashes start growing back, or little bits of her eyebrows, and I feel encouraged. But then the next day, they are gone. And I cry again. How long until she is unable to grow the hair back? Will she ever be able to stop? Will I draw her eyebrows on her until the day I die?

     We've tried a lot of things in the last 2 and a half years. Antibiotic ointments, vaseline, different types of fidgets, redirection, etc... You name it, we've probably tried it. She pulls at night when her head is under the covers and we are sleeping. But she is not. She is silently pulling. And I am silently crying. Every night before bed she wipes her eyebrows off with a wet wipe. And every morning it shocks me when I look at her face. Sometimes when I am looking through old pictures, I see one where she is smiling, and her eyes are smiling, and she has beautiful long lashes, and her eyebrows are adorable and bushy. And I long for that day again. I know. It's just hair. But it's not just hair. It's so much more.

     And that's not all. She's had periods of times when she has pulled from her hair on the top front of her head. Her beautiful long curly hair. I am grateful that she has only pulled little patches, where unless you are looking, you might not notice it's gone. Some of that hair is growing back now and she has little curls springing up that look like bangs.

     And that's not all. She has pulled from her private area. I can't imagine the physical and emotional pain she is experiencing to do that to herself. She can't tell me, and maybe I really deep down don't want to know. I don't know if it's because she's anxious, or has a hard time feeling stuff, or simply gets some enjoyment or satisfaction from it. Is it soothing? Is it painful? Does it fulfill a rigid routine she has playing in her head?  Just a few weeks ago when she had her seizure, she was in the ER and 2 nurses were helping me change her clothes because she lost bowel and bladder control with that seizure. You know those lights in the ER? They are so bright, and you can see everything, and it always illuminates your skin in unflattering redness and splotchiness. As we were changing her, we had all looked down, and I could see just how much she must have pulled the last few nights. It was red and looked so irritated under those damn lights. And we all just kind of gasped and they murmured, poor sweet girl. And I let a tear escape.

     So, yeah. I hate questionnaires that make me relive this horrible type of self-harm more than I do every morning when I wake her up and have to draw on eyebrows to start the day. Every day. And every day I pray that I can find a way to help her. Some days are just hard and I just can't sugarcoat it anyway. It's just hard. Love to you all. Thanks for listening. xoxo

Day 6. Year 2019

     Good morning! Hope everyone is enjoying, dare I say it, spring!  I both love spring and hate spring. I love the weather, all my kids were born in the spring, and to me, it always feels like a new beginning. But I hate spring too because usually, and I have no idea why this is, Vicki has significant trouble in the spring. Out of all my kids, she has the least amount of seasonal allergies. She does take allergy medicine and she used to get LDA (low-dose allergen) shots monthly from her developmental pediatrician. She is the least sniffy of all my kids in the spring. But so many BIG bad things have happened in the spring, that when the end of March rolls around and we dive into April and May, I usually hold my breath. When she was first diagnosed with a seizure disorder, it was May of 2010. She was diagnosed with PANDAs in April of 2012. Her anxiety heightened to the point that she couldn't get into or out of a vehicle starting in April of 2015. In the spring of 2017, she couldn't get on the bus to go to school which was the start of her public school decline, subsequent home-bound, and eventual private day school placement. She had a grand mal seizure in May of both 2017 and 2018, and another seizure a few weeks ago. And those were just some of the major things that happened. So, you can see why I hold my breath. 

     Yesterday, I think I was talking about OCD. Today I thought I would talk about Vicki and some of the ways we struggle on a daily basis with whatever you want to call it - autism, anxiety, OCD, hormonal teenage girl. Whatever it is, it wraps itself so tight around Vicki, that some days it's hard to break through. And the breath holding that I do in the spring.... it's kind of the same thing I do every morning too. Because you never know with Vicki. You never know what little thing it will be, or at what spot in her routine she will get hung up, but the fear, it's always there bubbling under the surface. I try really hard to stay cool, to not react to things. I firmly believe that Vicki can read people better than most people can. I swear she can smell the fear. And of course, that's not good at all. 

     One of the things that scare me the most is that I really don't know if Vicki would get up and out of bed in the morning if it wasn't for me. Think about that for a second. Sure when your kiddos are babies and toddlers, all you want for them is to sleep a little more, stay in bed on a Saturday until at least the sun comes up. And then as your kiddos hit the teen years, you wonder if they will get up before noon on a Saturday. The pendulum swings from one extreme to the other. And yes, there are times that you have to rip off their covers, bust open the curtains and belt out in your best Joey from Friends voice:

  Morning's here. The morning is here. Sunshine is here. The sky is clear. The morning's here. 

What? You don't do that too? Mark is the best at it. The kids love it, I swear. Ha!! Sorry, I digressed. But what if your kids never got out of bed? At some point, they have to be hungry, or have to go to the bathroom, or just get bored sleeping and being alone, don't they?

     Anyway, things are difficult with Vicki's sleep. In summary, she doesn't sleep much. We've been working on that, but to no avail so far. We had a sleep study which just proved to the technicians that we were telling the truth, she doesn't sleep, usually doesn't hit REM sleep, and if she does fall asleep, it's not till about 4 or 5 in the morning. She is up most of the night, sometimes she scripts and talks to herself about her schedule the next day, or what she wants to happen. Other times she gets up and plays a board game in the middle of the night, without lights on, sitting on the floor. Still, other times she just stares and relaxes in the covers. She typically keeps the covers over her head so it's really hard to tell when and if she falls asleep. We've tried lots of different things over the years and saw a lot of different doctors. She's done melatonin, we've tried and failed other sleep medications.. We've made changes to her room, her lighting, the sounds, removed all things she could look at or play with, brought them back. Stayed in her room with her, sat outside her room and would go in when we would hear something. You name most things, we've tried them. They want another sleep study, and we are gearing up for another new sleep medicine that her psychiatrist thinks may be THE one for her. But we have to be careful with meds, and the side effects, and how much interactions they have with her other meds, and how much they lower her seizure threshold. It's a balancing act. And it always scares me when we try something new, because I never know how it makes her feel. Or if she is experiencing scary side effects that we don't know. And every morning when I go in her room to get her up, I have to pull the covers off her and the bed. And usually, she is not all bleary-eyed, like you are when you have been sleeping hard. Usually, she looks awake. Very awake. But she won't get out of bed to get up and start the day. Yes, there are times few and far between that she has that redness and sheet wrinkles on her skin, and her eyes look tired, like she had been sleeping hard, but it's not often. And sometimes she wakes up and says she has to go to the bathroom. But then she wants to get back in the covers and "rest and relax". Other times she just has accidents in her bed and never asks to get up. 

     For the most part, Vicki gets up out of bed, only when I go in and pull the covers off her and the bed, and hand her the visual schedule for the day. If I don't take that off of her in a minute, then she still just lays in bed. Once I take the schedule from her, she gets up, always on the right side of the bed, grabs her glasses, Layse Black Cat and Fox, and goes into the bathroom. We've tried over the years to do other things, but this is what works, at least for right now. If I just go in and tell her it's time to get up, nothing happens. If I go in and rip the covers off and don't give her the visual schedule, nothing happens. If I just go in and sit in her room, nothing happens. If I let her "sleep in" and don't get her up, nothing happens. Some days when I know she was up really late, or I can just tell she needs more time to snuggle under the covers, or whatever, I wait and see if she will get up on her own. She never does. We've had it be 1 o'clock in the afternoon before and she will still be in bed if I don't go in, do her routine, and get her up. Some mornings on the weekend, I run out to the store or something, and the thing that weighs heavy on my heart is that I know just how much I am needed. Like, Vicki depends on that routine so much, that if I didn't get back home.... would she ever actually get up out of bed? And that scares me tremendously. 

     I love being needed and wanted. I love being a mom. I love being nurturing and loving, and I love doing things for my husband and kids that make them happy. But the sheer weight of being needed for Vicki to get up and start her day, it's a lot. Yes, we've tried having Mark help her, or the other kids, or aides that work with Vicki, but it doesn't really work. Can I try harder? Yes, I'm sure I could. I know, what if something happens? Or, hey mom, you need a break, let someone else do it. I know. But it's a lot easier to offer the advice, and it's even easy knowing it's the right advice than it is actually doing it. If you wait her out long enough, she's bound to get up, right? Well, we've lived through "waiting it out". We've done "waiting it out" for years. And it's exhausting. We do it for so many aspects of her life, and our life. Until you have to "wait it out" you don't really get the emotional implications of it. Yes, we've waited things out. Sometimes for up to 8 hours. But sometimes certain things take precedent. What do we need Vicki to do that day? The whole pick your battles... And does getting to a doctor's appointment, or getting to school take precedent? Sometimes. Because the moment you try to wait it out, for one thing, something else happens and then a routine is established that you never meant to happen and you can't stop it. And then you are stuck with something new that you have to figure out how to fix. And sometimes, just as a caregiver, I need a break. Yes, but sometimes that break takes the form of other things. Wanting not to start the day with a battle that you will have to wait out for hours. Wanting just to have some coffee with my husband and watch a home improvement show before we attempt to try something new. Or, just wanting the day to just happen, so you let the routines that run your life run their course because it's just easier sometimes. I'm sure some of you that are reading this think, 'don't complain about something being hard if you aren't willing to try to change it'. And while that's true, and I do know that things can't be the same forever, I am currently working on other battles that are raging. That doesn't mean that I don't think this is important, clearly, it is. And we've worked on this before, but right now I guess I am just taking the "easy way out" and focusing on other stuff because I can only handle so many things at one time. And currently, this isn't ideal, but it's working {for the most part}. And she is getting to school right now. So, there's that. And I will take that as a current win. 

     I guess I spent so much time talking about Vicki getting out of bed in the morning that I didn't really get into the rest of the day... Sorry!! I will just leave you with this... so I get her out of bed. That's only the first of the many times I hold my breath each morning. Another big breath-holding moment is when she is getting out of the shower. Sorry, I have to run right now, but I will talk about that next time... Love you all. xoxo