Monday, December 19, 2011
And our van is dead. Completely caput. The four of us officially have no vehicle. I feel like I'm going to be physically ill.
George came home to take Kyler to work today. He called me 20 minutes later to say when he was getting off the highway everything just shut down. It wont start,respond or even make a noise.
We are in a contest to win a van for Christmas. This couldn't come at a better time...although I have no idea what we will do until then..although I am sure we are not the neediest in town when we applied we talked about having a vehicle it just wasn't reliable...now it's just nothing. We are up against many many people.
Please pray we are able to win this van. If not we are looking to make payments on a used vehicle...with a quickness
Friday, December 16, 2011
I used to be a smart person. Seriously I caught on to things so fast. Rett Syndrome is kicking my ass and outwitting me at every turn.
For the last few weeks Abby has been....let's say difficult. She missed 2 days of school last week and 3 this week. If we take her out she screams bloody murder. I can't or couldn't tell what it was. She doesn't seem to be in pain. She is not having seizures. Hasn't had one since April. She isn't really having tremors either but she is not sleeping...seems mad or terrified.
I don't know why it didn't dawn on me before but she really really can't deal with change. Not of any sort. Every time anything is different it takes her forever to adjust or she just plain freaks out.
This am when I was driving home in our no heat, no air, hole in the muffler,oil leak van after dropping her father at work it hit me...duh...In the last 3 weeks we got new caregivers, the heat went out in the van and her brother started a job.
I never even thought about how this affects her...except the heat part. I have been so exhausted these last few months. I really did hand her evening care over too quickly. I usually lurk and get in the way for about 6 weeks or so and I set each girl on her own almost immediately.
She is used to coming home and me fussing over her and playing with her from the time she gets home until the time she goes to bed and I'm just someone in the house. I'm really feeling guilty here.
She is not at all used to having to leave at night or in the cold and I've been dragging her along because I've really had no choice. George gets off between 9 and 10 and now Kyler gets off between 9 and midnight. Having to go get both of them, drive a hundred miles or more a day doing it....I'd just bet that's it. She is in bed in jammies tucked in by 830....or she was until both the boys started working. If I had to have the car for therapy or appointments I always left her at home with her brother while I went for the hour trip to get her father and bring him home. Now I'm doing that twice...in the cold and taking her with me...after bedtime. Duh Terri.
Abby has her first seizure the day I got home after leaving her for the 1st time last year. We have never been able to make a day of anything. She wants to be home. She feels safe and warm here and everything revolves around her. She hates stores and the public and I'm beginning to think school may be too much for her. She just cant handle being over stimulated and I knew that. Kicking myself in the butt.
The dragging her out stops today. I will be making a trip to get one boy home with her while I have a caregiver then going to get the other one. I have to as long as we have one vehicle. Her Dad isn't going to love having to get off at the same time every night but we have no choice with her brothers schedule.
We are monitoring school to see if the falling asleep and not participating is a common place. She can sleep at home...where she doesn't. I don't really want to do homebound or homeschool. The thought makes me a little nauseous but like everything else...it's about her. I can't do anything else. She has to be happy and comfortable...
Sorry to those I promised to make this blog a happier place. I have no where else to turn
Monday, December 12, 2011
So, Kelly Butler and I want to share what we are doing with our girls.
As you know, the same method will not work for every girl and we do believe in the Multi Modal Communication System for Rettgirls.
This, by no means is the answer to everything, we change things up as our daughters learn and as new things are introduced to them.
We thought it might be easiest to show you in pictures. I will start with what Kelly uses with her precious Brooklyn.
As you can see Brooklyn's main form of eye gaze communication is through a plexiglass Eye Gaze Board. I hold it up in front of her and can see through as she makes her choice.
This one is her choice of activities "I want to read, I want to play a game, etc." Depending on which choice she makes, that leads to other questions.
If she chooses watch TV, she then gets options of movies to watch like this. We generally give her four movies to choose from. We hold up the choices in front of her and she looks at her choice.
These are her needs choices - "I'm Hungry, I'm tired, I'm Hot, etc"
We got the alphabet letters that they use in first grade and made boards for that too
Of course she ALWAYS has her yes/no. We do hold them up on the same side. Yes is always on her right
At meal or snack time we break out this one. She can choose each time she wants a bite or a drink and weather she want's more or is, "all done."
When on the road or doing several things we have a book we carry
We started with baseball card sleeves and fit the symbols to the sleeve size
I attempted to follow the color coding that the PODD system uses.
Each sheet and section is easy to find
TV Show choices
We follow the same pattern as the boards so the same pictures are always in the same place whether it be board or book.
These are the laminated YES/No cards we keep everywhere. At school. In her diaper bag,book bag and every room of the house. Yes is always on the left for Abby and No on the right because that is how they choose at school.
Any of these we have shown here are also a great way to start communicating with your girl.
Terri and Kelly
Friday, December 9, 2011
This is our new caregiver during the week with Abby. They adore each other and she is a huge help to me. Abby just squeals when she comes in and just loved her from day one. She is usually a little leery for a bit but not with this one. Lets hope this works out!
Tuesday, December 6, 2011
We had had a heck of a day. Just one of those crazy busy, sensory overload, Mommy is stressed out days. House is a mess, people are missing or need rides and Abby and I are running around like crazy people. Back and forth. Up and down. Left and right.
It was bedtime, or it was trying to be bedtime. 2 and a half hours later than normal. We were both exhausted and cranky. She laid in her bed fussing while I laid in mine aching. She kept sitting up and yelling at me. Just a standard, cranky po'd little girl. She would sit up, I would tell her to lay back down. She would scream, throw herself to the mattress then sit back up screaming. After about 20 minutes of this I just sat up and said,"Look. I know you're mad and I know you are trying to tell me. I know you don't understand why your words don't come out and why I don't listen. I'm sorry baby but I know you understand me and Mommy said it's time for bed so let's go to sleep and stop all this OK?"
She just looked at me and gave me a huff and threw herself quietly to her pillow. She then turned and looked at me and smiled and stuck her tongue out for a kiss. Just me and her. Both so frustrated but loving each other so much. She was asleep in 2 minutes.
Sometimes I get so busy, so broke, so frustrated with everything that even I forget she's in there. I become this kidomatic. Butt wiper, bather,dresser,loader,feeder that I forget or I don't think about how this must feel to her. Trapped in a body that doesn't work. Relying on a crazy person for absolutely everything.
And yet she still loves me
Sunday, December 4, 2011
Today was a day for just me and the kids and it was lovely. We are all always so busy coming and going that we don't ever just spend time together.
Everyone got up early without complaint and we all...minus Dad went to church. ( Actually it's kind of funny because as I sit here talking about my wonderful peaceful day Abby is throwing a major fit and screaming her head straight off over what's on TV.)
We went to lunch with a couple who lives down south part time and we consider Grandparents for the kids. It was nice just to visit and share a meal...seriously I don't get out much.
We went to Zona Rosa and my son dragged me through a very crowded Old Navy store doing the hint parade for Christmas. Luckily Abby didn't mind and we were able to just window shop and talk and tease each other. It was nice. I can't remember a day in a long time where there were no meltdowns, no teenage fits and no me thinking I want to crawl in a hole and disappear.
I have been really watching Abby lately and I think part of her sleeping problem may go beyond the seizure med. I hope it's something we can bring her out of but I think she may suffer from some kind of sensory overload or anxiety that goes beyond what we we previously aware of. She just shuts down pretty much anywhere but somewhere she is very familiar. She either sleeps or goes into her own little world. No eye contact, no smiles. I have her Neuro's trying to get in touch with each other so we can try to get something figured out on the med end. All but one parent I have spoken to absolutely insists it's the medicine we have her on so I guess we will see. My only issue is as soon as we get home...she's a happy camper...awake...alert. Gotta be more than the med ya know?
Well we are in the middle of meltdown central....what I get for being at peace. JINX!
Saturday, December 3, 2011
This week Kansas City lost local weatherman, Don Harman, who took his own life...seemingly out of the blue for those on the outside. We have sat this week and watched his co anchors and colleagues struggle through, cry on air and attempt to raise awareness. I for one am very proud of them. No one on the outside would have ever fathomed that that hilarious weatherman on the morning show was depressed enough to take his own life. His coworker blogged that he had somehow convinced himself that everyone would be better without him. I am so proud that they didn't try to cover it up and on a campaign to bring understanding to Depression. More people suffer than anyone knows.
Unfortunately all too often suicide seems the only answer to those of us struggling. Those who do not suffer are in absolute shock and distress when something like this happens. Even I went,"Why would Don Harman kill himself? He's the happiest little guy in the world." That was before I heard he suffered from depression. When that came to light I thought,"Well damn. Got another one. Sorry Don."
I suffer from Depression..true,clinical, mood disorder depression. I have for a very long time. I think it runs in my family genetically but for me there are many reasons above and beyond that have turned me into who I am and how I feel that I do not care to share at this time.
When it first started my son was very small. I can remember always being asleep. If I wasn't working or taking care of him I slept..Slept so I didn't have to deal with the sadness. The feeling of impending doom. Nothing matters, all for nothing. It was a feeling I just couldn't shake. I went to the doctor because I thought I had Mono. She told me I was depressed and put me on a medicine. A few months later I realized I wasn't sleeping all the time anymore so I stopped taking my medicine. Within a few weeks I was back in bed...back to doom and gloom. It took me years to figure out that I needed medication. That there was a link between the meds and the doom and gloom. I kept trying to convince myself that I was strong enough. That this thing was just something I had to get over. That I needed to stop being a wimp.
Off and on during this I slowly started to have panic attacks. Episodes that would appear out of no where. I would suddenly and without warning get dizzy and have vertigo. The lines in my vision would blur and I would hyperventilate and sometimes even pass out. If I couldn't get somewhere safe where I could be alone until it passed I would go into terror like episodes where it felt like I was losing my mind. Right there, right then. I could be walking through the mall, standing in line at the grocery store...driving down the road.
When my Dad passed away at 56 I lost it. Panic attacks and my bed became a routine..even while medicated. I went about 2 years where I could go to work and home and that was it. Even the thought of going to the store made me want to throw up. It was no way to live and I didn't know what else to do.
One day... I couldn't get the thought of just ending it out of my head. I had thought about it in the morning while I looked at my cabinet full of meds. I thought about it on my way to work...flashes of my son laughing, my Dad, my husband. I was so out of it that I answered every question with a confused, "What?" all day long
I had been married about 3 years. Wasn't what I had dreamed of. My son was entering his tweens. I had lost my Dad and my career that year due to cancer and a layoff. I was working at a job I hated for a person..that was just plain mean. In ever way. Vicious. I couldn't take any more.
I remember it almost like an out of body experience. I walked out of work at 5pm without saying a word. I started my car and started home. Right after turning East on the highway I saw a semi trailer truck. The only thing I thought at that moment was, " How fitting" as I crossed the road into his lane. I closed my eyes and hoped it would be quick. I cant tell you what happened. I didn't hit him. I ended up in the median turned the other way. I had heard honking. He didn't hit me. I didn't hit him and everyone just kept going. I sat there for several minutes confused and finally just turned the car around and went home. I had left no note. I had made no plan.
Still in my daze I returned home. I wasn't relived that I was alive. Frankly I was kinda pissed. Still in my daze I walked in the house, past my family and down into the basement. I laid on the floor for a very long time and cried. I finally got up and called the local help hotline. I was connected with a therapist and scheduled for a meeting with a counselor the next day.....
I have to admit that at first I hated counseling. I didn't want to talk and cry in front of someone I didn't know. There was NO way I was gonna talk to that pillow and pretend it was me as a little girl. Did she really want me to pretend that pillow was me at 8 years old? And she wanted the grown up me to tell the little me it would all be OK. I refused and she realized she had to get tough with me.
She started to finish my sentences. I would describe how I felt about something and she knew what I was going to say next. She too had suffered and overcome depression. Wow. She became my example. She told me what to do when the panic aura started and it worked. I could go to the store again. Soon I could even drive more than a mile or two at a time.
Just about the time she was signing off on my case I became pregnant with Abby. Everything was going to be OK. I felt normal and was moving on with life. It can happen...little did we know
What I am trying to say is depression is everywhere and it isn't just a poor me thing to get attention. I know that is the stigma it has gotten but it is far from that. It is something deep and tormenting and sometimes like living a nightmare with a smile on your face.
Like Don...I have been described many times as one of the funniest people you know or who have ever met. It's a laughter through tears kind of thing. A defense mechanism. That self deprecating humor comes from fear of rejection or from being made fun of. My thing is making jokes about my size. Maybe if I do it you won't. It comes from being bullied and self conscious.
If you suffer from depression or from feelings of hopelessness or suicide...you really are not alone. There are people that can help you. Can't afford it? I've never paid a dime for anything other than my meds that you can also get discounts on at almost every pharmacy.
If you are thinking of hurting or killing yourself PLEASE call 1-800- SUICIDE
If you are struggling and need to talk to someone who understands, call 1-800- WARM EAR or 913-281-2251
If you need more information or a referral, please call Mental Health of America at 913-281-2221No matter your financial situation, there is help available. Please seek help if you or someone you know is suffering
Thursday, December 1, 2011
This week Abby has or has had 7 appointments, her Dad works all week and her brother finally starts a part time job today. I haven't had much time outside of driving Daddy back and forth so we can have a vehicle to get to all the appointments. Hey...On a good note the heat went out! Not!
Monday we took Abby to the dentist for a few reasons. It was time for her regular check up but we are also concerned that she hasn't lost any teeth yet other than the ones she has ground down. Unfortunately because of her disorder and the nature of it we cant give her any kind of guard to help. The choking hazard is too great with her being unable to speak or use her hands to take it out. We have hoped to send her teeth to a lab to turn into stem cells as they come out so we are hoping by the time that comes there will be anything to send. On a good note No cavities!
Tuesday we had swim therapy and she did very well. She had kind of shut down on us the last 2 swim therapies so we pretty happy. Although we don't believe she learn to swim the therapy is great for her tone and awareness.
Wednesday we had a trip to the hospital for assessment for her back brace. Even though Chiropractic and massage therapy has helped tremendously we are going to have to brace her to keep her from getting any worse. She is a big leaner as comes with Rett Syndrome. The brace will help with that. We were surprised to learn that the brace doesn't correct, it just keeps the curve from progressing further.
She has Chiropractic and Massage both this afternoon and I'm hoping to discuss future plans with them. We are paid until the end of the year and if we can't get donations to last until we get our tax return in spring we are hoping to be able to work out some kind of payment plan. Fingers crossed.
On a couple of good notes the new caregiver seems to be working out. We have a few kinks to get through but nothing serious. She shows up on time and she gives me some much needed respite. On the weekends we now have another caregiver on Saturdays. I took advantage of that last Saturday and actually went and saw a movie for the first time in a year. I cant believe I went almost a year without help. I'm paying for it with my back problems but so grateful that we have started up the service again.
All for now. Off to take each of the boys to work. Yeah!!!!!Finally.
Friday, November 25, 2011
Yesterday after dinner my son and I were playing with Abby who was babbling on the couch. My 7 year old, babbling like a one year old and the waterworks started.
I asked my son if he ever wondered. If he ever wondered what our lives would be like had his sister been normal. Would I have gone back to work? Would we not be dirt poor living on one income? Would she have helped me on Thanksgiving....or complained and threw a fit cause she didnt want to...stomping out of the room..blaming me for the end of the world for being asked to set the table?
By the time I got it all out I was sobbing, my daughter still babbling and chewing her hands was smiling at me on the couch.
My teenage son, wise beyond his years. He looked at me and said,"Mom. stop. She's the happiest person I have ever seen. She wants for nothing and all she knows is she is loved. Her whole world revolves around her and she loves it. Stop doing this to yourself."
Wow. I wonder if he would be so smart had this not happened. He seems so much older than his peers. Is that a good or bad thing? I don't remember being that sensitive at his age. I pretty much cared about nothing outside of myself at nineteen.
I hope more than anything that this has been for a reason. To teach my son compassion. To do whatever it is it is supposed to do for me. Make me a tool for others. I don't know.
Living with Rett Syndrome...we don't often say this out loud. It sometimes feels like our child died one day. We call it D day. And we are forced to live on with a trapped soul without a body that works. Holidays suck. Hurts like hell.
There are day's...fewer and further between...that I don't think I will survive this. Like today
Thursday, November 24, 2011
I am Thankful that my son finally got a job and will start this weekend.
I am Thankful that we finally have a new caregiver, make that 2. One during the week and one for 8 hours on Saturdays. My back has been out for almost 2 weeks again. As I cannot stand or sit without assistance I am so thankful for caregivers.
I am Thankful for my daughter. More than anything she has taught me what love is and how to be a good person...even though sometimes my mouth gets away from me. For those affected by my temper I apologize.
I am Thankful that my kids are not selfish and realize that Christmas is about love and Christ..at least I hope they do. I guess we really only know that Abby is happy regardless and expects nothing and Kyler is finally learning that everything is not about what you get.
I am Thankful that I was finally able to quit smoking this year...even E ciggs. Now if I could walk Id tell ya if I was able to get up the stairs better.
I am Thankful for my extended Rett Family...even though we rarely see each other in person and when it comes down to it we'd all rather wish that we'd never had to meet..you are THE only ones that get me and I am eternally grateful that you have not left me.
I am Thankful for my church family. Always so genuine and filled with love. Every one of you. Thank you.
Tuesday, November 15, 2011
Eh? Yeah I have been awfully Canadian lately. Don't know what's up with that except for maybe the ton of special needs Mom's I have meet through the group A4CWSN lately.
I threw in the towel last week and finally called the agency to get a caregiver back over here. After 14 caregivers and nurses in 2 years I had had it and kicked everyone out of here. Part of me had the guilt trip that I stay at home so I should be able to take care of her on my own. The other part of me was just sick and tired of having people in my home and in my life that were weird or stole or you couldn't count on. 14 in 2 years. I liked 3 of them.
This summer I tore discs in my back and went into months of Physical therapy. Now I know I have a bad back but nothing I seem to do stops it from going out at the littlest sneeze or lift. Abby weighs 50 pounds now and we have 3 floors....I feel like I'm justifying this decision. I'm not. I'm just getting it out. OK Yes I am.
Late this summer I passed out on my front porch after no sleep for a few days and heat exhaustion. That incident has cost us almost 4 grand. 4 grand when we dont have 4 dollars. I just can't do it anymore. I need someone with her 24/7. Since that is me a 4 hour break a day shouldn't leave me feeling this guilty should it? I do it by myself all night long and while getting her ready for school. It's time someone helped me after school.....OK yeah I feel guilty. Why? Am I being lazy? I mean she is gone from 830am to 430 pm right? Auuugghh.
Saturday night for the first time in forever I went out. I had won tickets to Guns N' Roses. I went with my son. Yeah no kidding. Old ass me rocking out in the pit right against the stage. I had the time of my life. Everyone has their ROCK or Music Legend. That person for me is and always has been Axel Rose. I haven't always necessarily agreed with him and his decisions but that voice and that music. Never ever get tired of it and he was 10 feet from me. And he brought it. No Slash. No Duff and he tore the house down!
To say I got beat up,smashed and was sore and tired after the concert would be a joke. I felt like I had been in a car wreck. I laid in bed when I got home wondering if I should go to the ER or something. I hurt too bad to move or sleep..then it started. Out of nowhere Abby started to projectile vomit. 4 am. I could barely stand and I had to get up and turn,vent and hold her head to keep her from choking on her own vomit. I had to do this with no sleep for 2 more days.
This is the life I live. I should not feel guilty.
Wednesday, November 9, 2011
If you have been keeping up or following this blog you will know that with Rett Syndrome(MAN I HATE THOSE TWO WORDS) comes scoliosis and we have been dealing with it since we first noticed it when Abby was 3. Back then she had a slight 15 degree curve and nobody saw any reason to do anything but monitor her.
Come 5 years old she was at 23 degrees and we started PT. In 6 months we got it down to 17 degrees and we were thrilled.
5 months after she started Kindergarten and a new school she was at 34 degrees and they were talking rods the length of her back and a risky surgery. I got advice from a few other Moms and started the search for a massage therapist and a chiropractor. It took 5 months to find someone to take her on and with the help of some friends we were able to put together and pay for a therapy program for her until the end of the year.
Today we took her in for xrays and her curve is between 25-32 degrees depending where on the bend they measure. Not a miracle but definite progress. The doctor ordered her PT at school to be tripled(they wont do it) so we will soon be looking for therapy through the hospital. I wish we could do it through school but I doubt that will happen considering our district has one...yes one physical therapist. He wants us to continue the Chiropractic and the massage although I don't know how we will pay for that one after the end of this year.
And here's the kicker..don't freak out but...we are going to brace her. Studies show bracing doesn't usually work for RettGirls but we have to try anything we can before we let them cut her open and stick metal in her spine.
That's all I have for now. Keep praying and sending good vibes our way. We appreciate it!
Saturday, November 5, 2011
Abby's friends came and got her so she could go sit with them.
Abby and her aide. I think I was technically her aide for the day, but these 2 have a special relationship.
One of KC's many fountains
Abby and her Emma
Looking up at the Marquee. Priceless!
We saw a musical version of Horton Hears a Who. It was awesome!
The Princess after her play. She told EVERYONE about it for days!!!
Thursday, November 3, 2011
I didn't realize it as the day played out. It was only last night after I thought about the day that I realized everything is not Rett Syndrome. I am not a Rettmom. I'm Abby's Mom. She is not the girl with Rett Syndrome nor is her last name Rett Syndrome. She's my little girl and she's perfect.
Yesterday I volunteered for a field trip. I didn't know where we were going or what we would be doing but I knew they would need my help.
I never thought once about us getting on the short wheelchair bus while the other kids ran to the bigger buses. I didn't have to walk away and cry while the nurse hooked my 1st grader up to a feeding while 200 other 1st graders laughed and talked. I ate my lunch. Even when a group of girls asked if they could take Abby to their table. I just let her go.
When I noticed a toy store on the second floor of the place we were at I asked permission to go look while an aide kept an eye on Abby. I walked up to the second floor and I looked in the windows and I smiled at the children there. I looked at the isles of toys on the shelf and I didn't cry at all the stuff there would be no point in buying because she can't play with them anyway .I looked at the Tea Set and smiled.
We sat in a tiny theatre and watched a musical version of Horton Hears a Who. I sat on the floor next to her wheelchair...surrounded by 6 and 7 year olds and I enjoyed a play. I held my daughters hand and smiled and nodded at her when she looked at me in wonder.
Being surrounded on all sides by "typical" kids who can and do didn't rip my heart out. Does time really heal all wounds? Even this one? My daughter was just my daughter. She was Abby. Last night I cried myself to sleep with relief. Rett Syndrome may have a hold of my daughter's body but it does NOT HAVE CONTROL OF OUR HEARTS. Not anymore.
This year...come hell or high water...she will get that tea set for Christmas. I'll pour that pot for her and hold that little cup to her lips. I can't wait!
Monday, October 31, 2011
Saturday, October 29, 2011
Abby is ill. We are going on a little over a week now. Croup quickly turned into Pneumonia and asthma. The docs dropped that little bomb on us Wednesday. I was so shocked I just kept saying OK instead of drilling them with what an asthma diagnosis means. I'm hoping it is just something that comes with Pneumonia and that she's not going to have all the time asthma if that makes any since.
I am exhausted and will update when I can. I thought about posting a pic then thought that as a 7 year old little girl she probably wouldn't want me posting pics of her other than smiley or happy,dressed up or playing unless is was Rett Syndrome specific so there will be no pics until she is well.
Please keep her in your prayers.
Friday, October 21, 2011
Although we had notified every radio station,tv station and newspaper in town we had no press at our location. Just 3 families wanting the same thing for their daughters on a beautiful day. 3 families that had to fight the Kansas City Marathon circling our event sight to even get there. Thanks ladies
Piper. So little,diagnosed early and as beautiful as she can be.
Darling Kaiya just waiting to get in a good flirt with Abby's Daddy