It is interesting that I am posting this because I think today is one of the WORST days I have had in awhile. I think it is funny because I know someone recently read my blog and she told me she thought I was a strong woman. Strong? Strength? I sure do NOT feel as though I had that today. :(
The day started well enough. I got woke up at 7:30am and I waited to hear the garage door open down stairs because then I would know my husband had left for work. We have not been sleeping in the same room for the last few nights. I like the bed in the guest room and it is cooler in that room than our master bed room. I get up and shower. Then I get the children up and I shove them out the door. We had an appointment to go and have Joseph's foot re-casted for his AFOs. Apparently the guy at the prosthetic center had a problem reading the instructions. So even though the prosthetic center had casted both of Joseph's feet last time the manufacturer who makes the AFOs discarded the left foot since they were instructed to only make the right foot. Of course this mistake was not discovered until only one completed AFO was returned to the prosthetic center 2 weeks later.
I rush us out the door and I run though McDs to get something to feed the children while we are waiting at the prosthetic center. The center is a 30 minute drive from my house. When we arrived no one was there and I was pleased that we were able to get in and out pretty quickly. I load the children back into the car and realize I forgot water for James. He started to whine. I told him we would be home soon. As we started to head home I took a wrong turn and James pointed to the Vegas Strip and he kept talking about the "great big city" (from Pinky Dinky Doo). I had what I thought was a moment of kindness and I told James we would go and see the great big city. So I changed course and drove down the Strip. I thought this would be fun, even though it was during the day, because he had not see the Strip before close-up. As I leave the Strip on the south end he starts to cry. Then came the hysterics. He kept telling me to turn left. I knew he wanted to go back. I still have 20 minutes to drive to our house. James is now in the back screaming his head off, Margaret is screaming too because James is screaming and Joseph is crying because of all the noise. I get to listen to this for twenty minutes as we head home.
I am sure most people would wonder how I could drive home in all the noise and I will say I yelled at them a few times to be quiet but to be honest I have gotten used to the noise for the most part. I often have to listen to at least some screaming, by someone, while I am driving. It is not ideal but what choice do I have since I have to take the children everywhere on my own.
In, a smart and yet not smart move, I decided to go to Quest before going home. I wanted to pick up the lab results for myself and Joseph from the 19th. I decided to do this because John has been carpooling with a co-worker and I was not sure he would be home by 4:30pm for me to get the results so while I had the extra energy and the temperature had not skyrocketed yet (it was 110 today) I went to Quest. James was still crying and screaming to go to the great big city, Margaret was crying and so was Joseph. I got them all out and put Margaret and Joseph into my little wagon.
We went into Quest. James was screaming hard now and I could see the scorn on the faces of some of the people there. What was I to do? If I waited to get things done when all the children were happy I would get even less done than I do now. I filled out the release forms and waited. Margaret stopped crying and was running around the waiting room. She was touching EVERYTHING in sight and taking people's items that were laying out. Joseph was being a good boy strapped into the wagon and I was finally able to get James to calm down by getting him a cup of water. A very kind older women and her daughter tried playing with Margaret. Everyone always thinks she is super cute, and she is, but she will not talk back to you. So after they had tried to ask her a few questions and she did not answer I told them she had Autism. They asked a few questions and I answered them. All the while trying to keep and eye on James who was now playing with the water cooler. He kept filling his cup, drinking the water and then let it dribble down the front of his shirt. I saw what he was doing but I did not care. My choice was to let him continue or to make him stop and I knew he would start screaming again if I did. After a 15 minute wait I was told I could not have ANY of Joseph's results. The lab lady said she could not release the results piecemeal to me. I had to wait until ALL tests results were completed. I told her they had not done that before and she said I should not have gotten the results. She did give me my blood work and gave me a print out of Joseph's tests where it showed if it was in the lab or not.
I noticed on Joseph's lab work that several of the tests that had been ordered had been deleted. I asked her why. She said she did not know and I would have to call Quest to find out. So I took my blood work and the business card and headed back out to the van. I should point out I drive a 15-passenger van. The van is old but runs pretty well. My problem with it is that it is dark blue (I live in the sunny desert) and the air conditioning in the van cannot keep up with the searing hot weather. The van is like a giant blue, oblong convection oven. The air conditioning cannot even being to cool the van during the stop-and-go of city driving. We did not have far to go but the children's faces were all ready beet red by the time I got the car started.
I drove home and called Quest. I tried several times to get though to a human being. They make their phone system in such a why to stymie you but I was not going to be deterred. I wanted answers! On my fourth phone call I got the operator and she put me over to client services. There I spoke to a lady telling her I wanted the reason why the tests where deleted. She said she could not give me test results. I said I was not wanting test RESULTS I wanted to know why some tests were DELETED. I pulled into our community by this time but since I was on the phone I just circled our block. I had to circle it three times by the time I got off the phone. She finally got back to me and said the tests were deleted because the samples were not frozen. The lab drew the blood but did not label the vials for freezing so the samples were ruined. The tests that were NOT run because the blood was not frozen were the lactic/pryvuic acid tests, the Fragile X tests, and the MicroArray DNA tests. Some of the MOST important tests I needed back! I was LIVID!!! Poor Joseph has to fast for the acid test.
I pull into the house and unload the children (this is 3 hours after we initially left). More screaming is involved because James did not want to come home. I get everyone inside and into the living room. While I am in the kitchen getting some water and a bottle for the children, gone for about three minutes, they pulls a lot of the stuffing out of my couch. The poly-fill stuff is ALL over the place. I pick it up and leave them the water while I look to see what I can fix to eat. When I come back I see Margaret taking the water bottle and pouring it out all over the floor. I just take it all in stride and I turn around and leave to head out to the mail box to pick up the mail. I thought there might be a coupon for pizza in there. I know the kids LOVE pizza and we had not had it in a few weeks. When I get back into the house, again only gone for a few minutes to walk across the street to get the mail, I come back in to find all the stuffing in my couch back out. I lose it now. I yell at them and tell them to pick up the stuffing and put it back. I help because I KNOW they would NEVER do it on their own.
I move into the kitchen and sit at the table. I tried cleaning off the table a few days ago but paperwork from the children and mail always seem to take over the space. At the table I can see into the living room. So far so good in there as I hear Sesame Street playing. I spent about 15 minutes on the phone calling the neurologist's office (between being on hold and actually talking to a human being) to tell them about the blood work and that they needed to reorder the tests. I tell them I will be in at the end of the day to pick up the lab work because I figured John would be home in time for me to get there before they closed. This way I could take Joseph tomorrow (Saturday) and get the blood work re-done. It will take 2 weeks to get the DNA test back so I wanted to get the blood work done ASAP!
I check the mail and find Pizza Hut coupons. Yea! I will order pizza for them and hubby. I am not a huge pizza fan but I was hungry so pizza was working for me. I order the pizza and about five minutes later the door bell rings. James runs to the door saying pizza. I have NO idea how he figured it out but he did. I knew it could not be the pizza guy. I answered the door. Even though I had looked at my master calendar last night AND this morning I still forgot about my Nevada PEP worker coming over. I let him in. I start another Sesame Street, since that is what James wanted to watch, and we went into the kitchen. I try and scoot move of the piles of paper work on the kitchen table over to make room for the NV PEP guy.
He sits and starts to tell me that he had been trying a few places to find me respite but he had been unsuccessful so far. He said I was placed on waiting lists (this is the story of my life) and he was hoping to hear something soon. He said one of the places needed a medical diagnosis, not the educational diagnosis provided by the school, and I told him no problem. I was fortunate to have thought ahead on this one. I had Dr. Moore write letters for me giving the children's medical diagnoses and some recommended therapies so I could give these letters to the local Regional center, school district and to any other agency that wanted something more specific. I printed that information off for him and handed it over.
The doorbell rings again. Twice in one day. I answer and this time it is the pizza guy. I take the pizza from him and I herd the children into the kitchen with me. I give the children pizza and another water bottle (this time half water and apple juice at James' request)and I sit to try and finish my talk with the NV PEP guy. We talked for a bit about biomedical treatments for autism, vaccines and other autism hot topics. I printed information off for him too. During that time I was not paying enough attention to the children and someone put the water bottle filled with diluted juice in the floor. Joseph found it and poured it out on himself and all over my kitchen floor. I shoo the children out of the kitchen again and start Thomas the Train for James. The NV PEP guy and I were exchanging the last bit of information. I wanted him to look for SP and OT people that would come to my home. With winter coming (sickness) and all the work involved in getting the children out I would LOVE for someone to come to me. I told him one of the MOST important things I was looking for was a feeding specialist to work with Joseph. It is SO much easier if you can find a feeding specialist that can come to your home instead of making food, packing it and taking it to the appointment.
As the NV PEP guy gets ready to leave I look into the living room and I see the stuffing of the couch out ALL over the place. He leaves and I yell at the children again and help them to clean up all the mess. The Stuffing was EVERYWHERE! Sigh! Now I remember why I normally put Margaret and Joseph down for a "nap" in the afternoon. Joseph normally sleeps but Margaret does not. She will play in the room though so that works for me. Trying to have them all up is a nightmare if I cannot keep an eye on them at every moment.
After the mess was cleaned up I went back to the kitchen tale. I could see them and I wanted to finish my first slice of pizza. As I eat I finally get to look over my blood work. I have been feeling SO tired for a LONG time but I was not sure why. I thought it might be my thyroid since I have autoimmune thyroid disease. Sometimes my thyroid works and sometimes it does not. When it is not working I can go rather hypo. As I look over the blood work everything looks pretty good except a couple of things. One is my total cholesterol and HDL is too low. I have NEVER had that happen before. My LDL was in the normal range. I had a high C-reactive protein, twice the upper limit, and I know that is NOT good. I also had low iron levels (low hemoglobin and hemocrit, high TICU and UIBC with a very low % Transferrin Saturation). This explains SO much. Being so anemic is why I am SUPER tired, have a hard time thinking clearly, feel winded, dizzy and weak & sometimes have massive headaches which is not normal for me. I have been trying to eat a higher iron diet since the babies had been born but I am still super anemic. I will have to get on iron pills again.
As I finish reading my blood work I call John. I ask when he will be home and he sounded winded and cross. He was moving things around in his room and he said he was looking for his co-worker who he car pooled with but that she was not around. He said she knew he needed to be home by 4:30pm. I said ok and I was going to start to tell him about the blood work when I see Margaret in the living room taking the water bottle (I had only half filled this time and it had diluted sugar-free lemonade in it) and she was shaking it out all over the couch and floor. Again I lost it. I yelled at Margaret. She did not cry but she knew I was mad at her. I told her, "No, no do NOT pour the water out!" You have to keep sentences short and simple for her or she does not seem to listen to them. John heard me over the phone and said he needed to go. I said ok and hung-up.
My day had been such a misery. It started out in a hot car, screaming children, me screaming at the children to be quiet, stuffing, more stuffing, water pouring, screaming, stuffing, pizza, water pouring, stuffing, water pouring, and me yelling. It had been such a LONG day. Things were not going well. I looked at my phone. It was 4:20pm. I had not heard anything from John so I text him and ask if he is coming home. I get a text back saying he was leaving his co-worker house, where he parks his car, and was heading home at 4:25pm. I knew I would not be able to go and get the lab work from the neurologist's office and we would have to wait until next Saturday to do the blood work unless I wanted everyone to get up super early (4:30am) one morning next week. This way I could be back home by 7am when John would have to leave to go to work. Taking all three children to the lab by myself id just NOT an option!
I was SO depressed. About the blood work for Joseph, about the blood work results for me, John not being home on time, the way the children had behaved and life in general. So at 4:30 I left the living room to the mercy of the children and went upstairs to lay down. John comes home at 4:50pm. I guess he looked around for me down stairs and did not see me. He came upstairs and opened the master bed room door and then slams it. I could hear him coming. He barges into the room and asks me in an annoyed voice, "So what is the plan?" I said, "Nothing. I am just laying here." Then he gets really angry with me and yells at me. After all the yelling today that was the last thing I needed. He yells at me wanting to know why I was not going out. I said there was no need. I needed to go to the neurologist to get lab work but they were closed. Then he yells some more, but I know it really is not "at" me, over him not being able to get there in time and how plans had changed on him. I asked him why he was yelling at me when he was really angry at his co-worker. He just got more annoyed with me and then left. I was crying at this point. Instead of coming home and saying he was sorry he was late and it could not be helped and cuddling up in bed with me, maybe even asking me why I was upstairs in the first place, I get yelled at.
So crying I went downstairs gathered up my stuff and tried one last time to talk to him. He tried to turn everything around on me. This is typical of how John treats me when something goes wrong. I am ALWAYS at fault. Most of the time I can take the crap without a problem but not today. Not with all the yelling and screaming in the car and house. Not with all the bad, sad and disappointing news. Not today...
Now I am sitting at Starbucks. It is comforting to hear the people around me even though I feel SO alone. I tried to call my two friends in my phone but they are busy. The rest of my phone directory is filled with therapists, clinics and doctors. I need to try and figure out how to make some friends. Being alone, or at least feeling that way, sucks. THIS is one of those moments that I do not feel strong. Not for anyone, especially myself.