Mama Sick

For three years now the three of us have gone to a local fall festival and I think of how different Tyler is with every year.  How at one he screamed in the petting zoo and how at two he liked riding a pony and how this year he had his first ever lemonade and corn on the cob:

I’m not going to pretend we had a perfect day.  This year I worried about spending money at the festival, but I still want to be able to provide Tyler with fun childhood traditions.  Grant and I worried about Tyler’s motor and facial tics and my legs were hurting.

But I tried to live in the moment.  Tyler has tics, not cancer and he was amazed at everything he saw. We all really enjoyed the hayride:

Tyler was upset that he was too small to ride the go-carts.  We both seemed to melt down at the same time, so we quickly picked out a couple of pumpkins and some candy and ended our day at the festival. It wasn’t a perfect day, but we were all together and most of the time the three of us were smiling.

…My latest post is over on New Jersey Moms Blog.  I hope you will check out the first Halloween season Tyler is beginning to understand!

I once read that in order to get a child to do something or agree to something you should tell him or her that it is part of the “rules” of being a good parent.

Tyler is starting to get better with potty training, with the help of candy kisses (yes, getting desperate), except he still has not pooped on the potty, not once, EVER.  I know this is the hardest part for some kids to do.  He knows he should go poop on the potty, so he feels embarrassed when being caught with his pants UP, so to speak, and does not want to be changed.

One day he was really resisting and I said, “Now, Tyler, you know me changing you into a clean pull-up is part of me being a good mommy.  I wouldn’t be a good mommy if I didn’t do it.”

He looked me straight in the eyes and pleaded, “Please be a bad mommy.”

As it could be a few more months before our money situation changes, hopefully, with me receiving disability, Grant and I have been talking about what we can cut back on and what we probably qualify for now.

We will definitely be applying for food stamps and heating assistance.  The things I am scared about are cutting back on child care and the meals we have delivered to us.  Tyler is in daycare full time, because we believe he is having a better quality of life than we are capable of giving him right now during the day, and because I need to rest or go to doctors.  I am exhausted after the weekend with him, forget a long weekend!

I still have trouble standing, plus with fatigue, even sometimes heating the prepared meals is too much, so my mind reels when thinking about making meals from scratch.  Plus with Raynaud’s Syndrome, touching freezing or even cold meat is very painful.  And cleaning up after dinner??

When you are chronically ill you find yourself spending more money on things, not less, out of necessity.  I am really worried that having Tyler home more often and me trying to cook again will only make me sicker, when I am trying to get to some form of health that allows me to function more normally.  Right now I am at the point where just getting through the day is hard as it is.

Yes, eventually we are still moving to Cleveland to be close to Grant’s family but we are waiting to see what the outcome of my disability application will be.  I just hate feeling so uncertain about our lives.

My twelve-year-old cat, Rosie, suffers from a condition called Luxated Patellas, where her knees dislocate.  Lately, she has been very bad, limping around, mostly resting.  We had an appointment for her to see the veterinarian on Wednesday.  On Tuesday afternoon I mentioned to Grant, “You know, I have not seen Rosie all day today.”  We started looking around and by Tuesday night we were tearing our place apart, looking everywhere.  It had been twenty-four hours since we had seen her.  I was trying not to cry, I had to give Tyler a bath, feed him, put him to bed, etc.  For those unfamiliar, cats will often go to dark hiding place to die.  Grant was in our bedroom in mourning.  I was kind of in shock, numb.  Rosie had never hid like this before, especially for so long.

On Wednesday morning there was still no sign of her.  As I was putting Tyler’s shoes on for school I couldn’t take it any more.  I ask Grant to finish up with Tyler and I had to retreat into my bedroom.  I couldn’t believe she was gone.  I blamed myself:  too many steroids, too much pain, not bringing her to the vet quickly enough, etc.  I cancelled my appointments with my Primary Care Physician and my therapist.  I was in no mood to do anything.  I was eulogizing Rosie in my head for this blog.

Shortly after 9:30 in the morning, Grant burst through the bedroom door.  “She’s alive, she’s alive!”, and practically threw her on the bed! We never found her hiding place, Grant was on his computer actually searching for a charity to donate to in her name when he heard a limping step.  He picked her up to make sure she was not her lookalike sister.

We un-cancelled our vet appointment.  The news turned out to be overall positive.  She is way too old for surgery so that allays any guilt I have that we can’t afford it.  We are going to wean her off the steroids and do glucosimine shots.  One shot every four days for six times and then once a month.  The vet seemed to think this would help her immensely.  I gave her the first shot at the office.  Years of injecting myself with biologics for my Rheumatoid Arthritis has made me pretty experienced, although I don’t like hurting my cat.  I can only hope that she will understand.

I am happy to have Rosie “back”, as she has been a constant companion to me in my own illnesses and has given me so much support.

Grant and I met with the therapist today for Tyler.  From what we tell her, Tyler IS having tics which are still probably anxiety related.  The tic thing can be good in that children do get tics and they can disappear as quickly as they came in about a year.  Also, early onset tics tend not to stay with children and turn into something like Tourette’s.  She also said that if the tics are not interfering with daily life then you usually wouldn’t want to medicate a child.

She gave us some book recommendations so we could learn and understand how to treat his anxiety and talked about how to punish him while not increasing his stress. She said Tyler was still young and that I should not worry so much about him being potty trained, that this was more important.  She also gave us a couple of questionnaires that we have to fill out, basically dealing with how Tyler compares to other children, and then she will score them to see how he ranks against an average three-year-old.

It’s hard to see Tyler go through his tics and know that he has stress, but I also know that things could be worse and I am thankful that he is basically a healthy child.

In keeping with the theme of my life, my disability appointment was rescheduled for October 19th, three weeks from now!  I feel so angry and sick of this.  I couldn’t wait to have my interview and drop off the ton of stuff I have and put it in God’s (and the government’s) hands.  Now it is all still sitting here.

The woman with whom I rescheduled my interview with encouraged me to apply on the internet and drop off my documentation, but from what I know it is best to do everything in person.  But wait three more weeks? And how do you just walk into the office without an appointment and say, Oh, here’s a hundred pages, can you put that with my online application?  I’m just not sure what to do.  I’m going to research but if anyone has any advice I would appreciate it.

Tomorrow Grant and I see the therapist for Tyler’s stress issue.  It’s a rough week all around. Wednesday is an appointment with my therapist, my primary care physician AND my cat’s veterinary appointment and Thursday I will have the rest of my dental work done.

Life rocks.

The moment that I have spent a year of my life working towards is finally here.  Yes, between being sick and other crises it has taken me a year to do the paperwork that my disability mentor has suggested I complete before applying for disability.  I literally have more than a hundred pages of documentation between doctor’s notes, lab work, letters from doctors, and letters from friends and former co-workers.   I also have matrices that show how my symptoms affect me, and how I was before I was sick and how I am now.

My doctors think my paperwork looks good and that I have laid out a good case.  Many people are optimistic but I am really scared they will find some reason to reject me.  Besides being sick we really need the small amount of money that I would make annually.  Some income is better than none at all.

I have worked so hard for this.  I can’t imagine working, between seeing about 3 doctors or therapists a week and sleeping and laying down for over 12 hours a day, chronic pain for two years straight, etc., but what if THEY see otherwise?

I really don’t know what to expect at the interview tomorrow.  Your prayers or good thoughts are appreciated.

One of the few things I’ve felt okay about spending money on lately is Tyler’s music class.  We used his birthday money plus a small amount of his savings to enroll him.  He has been going for two years, ever since he was a year old.  When I tried to enroll him this time around the class was already filled.  I was so disappointed.  This week we learned there is an opening and the first class is tomorrow!

When I was a full-time working mom, I treasured this precious time together.  It was by far the best part of the week.  Ever since I became sick with Lupus it has been hard getting there every Saturday morning, but I still treasure it.  With my cane, with Grant, my mother, or just Tyler and I with him dragging something that I can’t hold, I feel it is a victory over my disease.  I’ve only missed a couple of classes where I felt I absolutely COULDN’T do it.

I used to be a singer, I stopped after college and now only Tyler benefits from my voice, but I see the same love of music and singing in him.  Tyler sings on pitch and makes up his own songs.  He loves so many types of music.  It is a gift that I would like to nourish.

Besides all of this, as a sick mom, I know that there is one thing we will definitely be doing over the weekend, and even if it exhausts me for the rest of the day or I am not doing well on Sunday, I know at least we will have shared our love of music.

New Jersey Moms Blog today talking about how her little baby is growing up way too fast!  Check out From Elmo to Spiderman in Sixty Seconds.