Mama Sick

Today my brother and sister-in-law came over for a picnic in the park with Tyler, one of my closest friends, Francesca (not her real name) and I.  An outing with my brother and his wife is always very interesting because the two of them both have Asperger’s Syndrome and she also is mentally retarded.  Asperger’s is a kind of high functioning Autism.  It’s a bit like having “no filter” and my sister-in-law just says what’s on her mind, which many times, isn’t very nice.  The two also often talk non-stop about completely unrelated subjects and can be hard to follow.  Sometimes I wonder how they can have a conversation with themselves.  But over the years, I have come to accept her; my brother’s just always been my brother.  I realize that they are Tyler’s aunt and uncle and they need to be with each other, no matter how uncomfortable it can get for me. I know at some point I will have to explain to Tyler why they are a bit different, but right now he just looks at them like any member of his family.

My legs felt very weak today but my pain wasn’t too bad.  We got our picnic lunch courtesy of Wawa and headed to one of our many local parks.  The weather wasn’t too hot at all, in fact was a bit cool when the sun went in and no rain, thank goodness.  My brother and sister-in-law played with Tyler on the jungle gym and pushed him on the swings, which are things I no longer can do.  It makes me feel good at least that Tyler can get out, get some fresh air and have some fun.  There was even a local highschool baseball game going on that I was able to walk over to and watch with Tyler.  His first baseball game.

When we drove back home we said our goodbyes.  Then, Tyler realized that that wasn’t enough for him and he ran down the stairs.  I am begging him to slow down because I cannot keep up with him and Francesca was loaded down with our picnic stuff.  My brother and his wife were already starting up the car.  We flagged them down.  Tyler wanted big hugs from both of them. My brother grabbed him and swung him up in his arms and Tyler was laughing.  My brother had such a look of pure joy on his face that it brought tears to my eyes.

Afterwards, Tyler said he was “sad”.  I told him that he could call them whenever he wanted.  I am really going to try to make it a point to see them about once a month.  We are planning on moving sooner or later and then visits will be few and far between.  I want Tyler to really know my brother.  Today was a good start.

As soon as he was born it seemed as if Tyler were super-sensitive to sounds.  If my husband would open up a can of soda, he would wake up and cry.  A car going by would wake him up.  It seemed to get better after the infant stage but when he began to be verbal he would sometimes say a sound was “Too loud for my ears”.  And they weren’t, they were normal sounds, such as the t.v. being on at a normal or low level and a toilet flushing or a sink running in a public restroom.  At first we thought he was doing it for fun because he was directly quoting from a DVD that he loved.  But as it became more apparent it wasn’t going away, we knew we had to get his hearing tested.  

Before we started the test, the Audiologist explained that some children are just very sensitive to sounds, including her own son who couldn’t stand being in a movie theater or seeing fireworks until at least age five.  She also told me what I had already researched, that some people who are losing their hearing claim that sounds are too loud.  

I sat in the hearing booth with Tyler in my lap because he wouldn’t go in without me.  There were mechanical animals that played drums hidden in the booths over the speakers and the light would go on to show them when he turned his head.  It was a weird scene and at one point Tyler told me he “wanted to be left alone”.  As he reacted to each beep or wind sound, I got more and more relieved.  The audiologist also tested his sensitivity by having the animals play their drums and he was okay with that too.  

She told us that he did very well with the hearing test, he was consistent with all of the sounds. She wanted to do a test to see how his eardrums were working which he wasn’t too crazy about.  I volunteered to show him how it worked and how it doesn’t hurt.  Tyler did well in both ears, everything normal.

The problem is she believed that Tyler was too immature to take the most precise test, a hearing test with headphones. He had never worn headphones and once when Grant tried to put ear buds in his ears he freaked out. She did not believe he would react well to the headphone test and told us we would have to wait six to nine months to do it.

So right now, he hears, except we don’t know if he is hearing with both of his ears or if one ear is dominating to compensate for any hearing loss in the other.  There is nothing to do now but wait six to nine months…and to try to put it out of our minds.

Although I am not convinced that the cause of the pain in my calves that has been so debilitating is from Fibromyalgia, I took my Rheumatologist’s advice and referral and decided to start physical therapy.  I am not a fan of P.T. for Fibros because so many physical therapists do not know the first thing about how to treat someone with Fibromyalgia.  A few years ago I had to “drop out” of P.T. because it was actually flaring up my Fibromyalgia and I was being treated for something else.  I have never found a therapist that amounted to little more than a trainer.

But this person came well recommended so I went in yesterday with my hopes high.  I had a list of my diseases and conditions and medications for him and he asked me some questions. When he asked me what my goals were I said, “I am not looking to be able to run a marathon. I would be happy to take a walk around the block with my son.”  So, the guy tested my range of motion but other than that he didn’t even TOUCH me!  He just started me on some stretches and then takes me over to a recumbent cross trainer and says to do it for 10 minutes. I pushed myself, even though I was very upset.  I sat there afterwards wondering how I was supposed to get back up.  I practically crawled over to the table.  Then he shows me to the machine where you put on a belt that is connected to weights and wanted me to walk back and forth.  I said, “Look, I don’t think I can do this”, and he told me to do what I could.  Being the insane person I am I did what he asked.  At this point I am holding back my tears.  Then he said he would see me next time.

I cried in the car to my husband who was as angry and as disappointed as I was.  I was completely going to tell this guy to forget my other appointments but my friend suggested that perhaps this was an assessment rather than my treatment and that maybe I should call him and ask what these sessions will consist of.  So I talked to him today and he said that based on my goals that strengthening my muscles was what was needed.  “So, there will be no heat or massage or anything like that?” “I would doubt it.  You could put heat on your legs yourself.  As for your pain, well, we’ll have to find a way around that.”

That’s right, you IDIOT; massage, heat, a TENS unit, etc. are ways AROUND my pain so that I can do your STUPID exercises!  I think if I told a even a FRIEND that my calves were killing me and I was wheelchair bound at times that even he or she would at least TOUCH my calves, much less a professional to find out what was going on.  Are my muscles in knots?  Are they in spasms?  How the Hell would this guy know?!

My God, if I knew a way around my pain I would be home with my son or working full time, not at his office!  If I wasn’t in so much pain I would be getting a natural workout just by keeping pace with my two-and-a-half-year-old!  (I used to be the mom who climbed up on the jungle gym with him before I got this sick)

So, I’m a bit peeved at the Physical Therapy world, if you hadn’t already gathered.  And still looking for answers.

Lately some of my conversations with Tyler have resembled that famous Abbott and Costello routine Who’s on First?  

This usually will go on doing dinner.

Tyler:  Is this (taco) mine?

Me:  Yes, honey it’s yours.

Tyler:  No, it’s mines!

Me:  Yes, it is yours.

Tyler:  You said it is mines!

Me:  Honey, when I say that something is for you I say that it is YOURS.  When YOU want to talk about it YOU say that it is MINE.

Tyler:  (tearful)  Is this mines?

Me: Yes! Yes! Yes!

Someday he’ll get it.  Right now I will just try to keep from pulling out my hair and thinking how cute it is.

Today I had a pedicure.

 The reason that I entitled this post like I did is because those who know me through Twitter or New Jersey Moms Blog, or anywhere else online; or even those who know me in real life might say, “How dare she spend her family’s money on a pedicure!”  I decided to write this post because before my husband and I lost almost everything we have due to both of us being sick, I might have said that or thought that about someone else.  

In fact, I have.

Before I became extremely ill, my very good friend who has been disabled permanently for about three or four years would go shopping with me.  I was working, but needed help that would depend on her pushing a wheelchair or just cheering me on, depending on how sick I was.  I would shop for the season, spending a few hundred dollars at a clip (I typically did not go shopping a lot), and often she would buy some things too.  I used to think, “The girl has no money, no job, and debt.  WHY is she buying anything?”  

Now that I find myself in a similar situation, I realize that I may be poor but I am not DEAD. There are still things that I need (underwear, clothes in the size that I am, a haircut) and still some things that I want.  One of these being a pedicure, another, chemically safe shampoos, body washes, etc. Just because I am poor I am in no way less deserving of the things that I used to have when I had money.  I am not less of a person because I am poor.  I did not morph into a slug; I am still the same person that I was. 

The same thing can be said about my whole family.  We ate healthy foods when we had money.  Should we now eat only foods that are canned, meats that are high in fat and no fresh fruit because we cannot afford them?  Did my family change because we became poor?

I don’t want you to think that we haven’t cut back, we have cut way back.  We now only have one car and I cannot remember when we went out to a restaurant or a movie.  Most everything we have goes to our son and we buy very little in the way of luxuries for ourselves.

 Now that I am in the lower class, below the poverty line (hopefully temporarily), I have a whole new understanding of what it is like to be poor.  My family and I didn’t change because we became poor and those who have been poor all along deserve to live their lives in dignity.  They may have “less than”, but do not deserve”less than”.  We are all people.  Our children are all children.  We all still want the best for our children just like anyone else does.

And sometimes, their moms even deserve a pedicure, every once in a while.

The last person to comment on my previous post, Liz of This Full House, mentioned taking baby steps towards recovery.  I’ve never viewed my recoveries, meaning coming out of a flare-up, as baby steps, but that is just what they are.  

I have been in chronic pain, whether it was from Rheumatoid Arthritis, Lupus, Fibromyalgia or God knows what else, for over a year and a half now.  When you are sick for that long it is hard to see any sign of improvement, or you just may not have any.  But lately, I have begun to notice some improvements.  Dare to dream?

For a while now, I have noticed that I am not as foggy when I wake up in the morning.  I seem to be more alert.  Even though when allowed I am still sleeping pretty late in the morning (11:00 a.m.), I am no longer dragging myself out of bed at noon, nor do I need anyone else like Grant to drag me.  Although if he would learn to make coffee I would be very happy!

For about five days now, my hot flashes have been me merely just being hot, not the kind of hot that makes you want to take your clothes off or jump into a shower even though you had one five minutes ago.  It feels so good not to have hot flashes!  

And the biggest thing happened yesterday.  For the first time in over a year that I have been taking narcotics, I only needed to take two Percocets instead of my usual four for my “breakthrough” pain.  This was huge for me because last night was Tyler’s daycare’s birthday party and it was raining and really hard to get through, although still fun for all three of us.

So today I had to take my usual four Percocets, so what?  Baby steps, right?  

Thinking positive that “Mother May I”, soon be allowed to take one giant step to better health!

For about five months one of my best friends had been being paid to help me cook dinners, provide care for Tyler when we needed a break, and to tidy up our home.  A few weeks ago her father started having medical problems along with financial ones.  So I can’t say it came as a real surprise when on Monday she told me that she would not be able to continue with us as it had all become too much for her.  

Still, I was devastated because I know that I really need her help, especially when it comes to cooking.  Although the doctors still aren’t sure why, I have severe cramping in my calves constantly, with some relief with narcotics.  It is difficult to stand for more than a few minutes or walk more than a few hundred yards, if not impossible.  Grant and I put into Action Plan B, which is a service that provides home cooked meals, but it won’t start until Saturday.  

So, just a few days, right, to either order out or cook?  Last night I made homemade beef barley soup with lots of veggies.  I felt really good that I was able to do that for my family, and maybe this wasn’t going to be so bad after all.  About an hour ago I started to make dinner.  The pork chops have defrosted, the Middle Eastern grains are boiling.  I am looking for a cover for a pot when I realize:   I CAN’T FUCKING DO THIS!  I’m standing, I’m bending, I’m reaching and I am in just too much PAIN, I know I cannot finish this dinner!  I throw out the pork chops and the grains (the waste!).  But all I can think of is getting off my feet so the pain will subside.

It’s one of those days, which, most of the time, it always is.  I cannot feed my family.  I never loved to cook but I was decent at it and it used to feel good, being able to cook healthy from scratch meals.  I’m so frustrated.  Sure, I know that people who can’t stand can cook, but accomodations have been made; they’re in wheelchairs, their kitchens have been redesigned, they are in a bigger space…I just can’t say if this will be for the rest of my life.  But how long before I can, or how long before I can feel well enough to cook again?

And yes, I can teach Grant to cook, but he isn’t going to cook the way I would.

Until then, the kitchen is closed.

In a weekly feature entitled “Tuesdays With Tyler” I will post something Tyler says or does that is either unique or heartwarming.  I hope this will serve as a record for me of the precious things my little one says, as well as hope to entertain my readers.

The battle to get Tyler to go to sleep at a decent hour and to sleep in his “big boy” bed continues.  I have had success in the past with singing him to sleep but lately, especially as his vocabulary continues to expand, he wants to sing with me!  At two-and-a-half, he is already so musical.  I loved to sing for as long as I could remember and sang through college in various choirs or musicals but had to stop once I hit the working world.  The voice is like a muscle and so is pitch, use it or lose it, and now I would say I have a merely better than average voice.  I know I am not the only one who wonders if their offspring has inherited their same abilities or if they will surpass them.

I enjoy singing “duets” with Tyler but not at bedtime!  I was so frustrated last night – again!  He asked me to sing him the lullaby Diego sings to the volcano in Go, Diego, Go!  and then told me he wanted to sing it.  I told him NO but he said he wanted to sing it to me.  In his sweet baby voice, he sang:

       Go to sleep, go to sleep, go to sleep my Mommy,

       Go to sleep, go to sleep, go to sleep my Mommy,

      Go to sleep, go to sleep, go to sleep my Mommy,

      Go to sleep, go to sleep, go to sleep, my Mommy.

His voice, so clear, in an almost perfect pitch that has to be so unusual for someone his age, filled my heart.  It also brought back memories that I have heard all my life:  Your voice!  It’s so clear! Your singing voice is so clear!

These trying times will pass, and so will our lullabies to each other, but I hope my son will always have some time to make music with his mother.

As crazy as last night with Tyler was is how peacefully it ended tonight.  As mentioned before, we have been having a tough time getting him to sleep in his own bed.  Last night we couldn’t even get him to STAY in his own room, much less get in to his bed!  If I get worn out, which can easily happen at the end of the night, and Grant takes over, it’s usually a FAIL.  Nothing against Grant, Tyler just wants me to be the one to put him to bed.  If I try to go to sleep before him because I am completely exhausted, he will freak.  

Yesterday we couldn’t get him to nap.  Which would be alright if he didn’t need it, but he turns into someone resembling a woman with a severe case of PMS.  So I gave up and left him to Grant, after Tyler had been up over 14 HOURS (visions of my life with him as a newborn).  Grant decided just to leave him on the love seat while he worked on his computer.  Tyler dropped his little jaguar and when he went to pick it up, BOOM!, he fell over the arm rest and smacked his head on the hardwood floor!  He was screaming.  Grant screamed for me.  Instinctually I knew he was okay, he didn’t need to go to the hospital but I said, “I can’t take it any more, I’m bringing him to bed with me!”  He was asleep literally in a minute.

Of course, Tyler wound up sleeping to past 9:00 this morning, but I was able to get him back on schedule.  We didn’t even bother with a nap since he had gotten up so late.  Tonight, it took a little bit, but I got him in his bed.  We did prayers and he asked me to sing him a lullaby from Go Diego, Go.  I’m thinking, “Go to sleep, volcano” is NOT going to work, but it actually started to calm him down.  Just like in Diego!  I then started putting his name in the song instead of the volcano, continuing my set with a strange song I remember from 5th grade choir consisting of nothing but “lu, lus and ah, ahs”, bringing the house down with “Hush, Little Baby…” and encoring with “Somewhere Over the Rainbow”.

Thank you and good night, everybody, it’s been a pleasure putting you to sleep!

Now if only he will stay in his big boy bed All Night!

Tyler is hitting the terrible two and a halves, I guess, with almost everything that you could think of  going wrong happening all at once.  My baby, who proudly ate every food at his catered one-year-old birthday party, including swedish meatballs and chicken parmigiana, has suddenly turned into an I Want Macaroni and Cheese for breakfast, lunch and dinner kid.  Oh, did I say breakfast?  My mistake, I can’t seem to get him to eat breakfast at all any more, unless it’s maybe (organic) fruit snacks or Wheat Thins.   I’ve held tight to no fruit snacks but have given him Wheat Thins or goldfish, just to get something down his stomach in the morning.

And no one ever told me that once you transition a boy from his crib to a toddler bed that there will be no more Letting Him Cry It Out?  Why was I not told this?  A prisoner in his crib no more, he is free to move about as he pleases and he does not want to be in that bed!  Preferred choices range from my bed, of course, to the floor!

Lastly, although he seems to do well in daycare when it comes to potty training, he wants no part of it when he is home.  

Logically I know that these problems are the problems that every parent has when it comes time for a child to test out his or her newfound independence.  Logically I know I can do some research on line, buy a book or ask some friends with older children what they did. But somehow logic flies out the window when it’s YOUR child and you just look at him helplessly and feel like you are the worst parent on earth.  

What happened to the child that ate EVERYTHING, to the amazement and envy of friends and family.  What happened to the child who after a five minute rock on the glider would lay down peacefully in his crib and sleep through the night, every night?  

That child is gone and is turning into a person, albeit a little person with a will of his own and his own two feet to take him where he wants to go.  I guess it’s time to stop wishing I could have my baby back, wishing for the good old days (last month) and get used to the child he is becoming. And come up with a compromise that will let him be the person he is evolving into while still making the decisions I know I must make as his mother to help him do that.