I’m talking about when a chronically ill parent decides they are going to give it their all, usually to do something stupid if not impossibly beyond their body’s capabilities, for their child.

On Friday, Grant and I took Tyler into New York City for the first time, to the Museum of Natural History.  I had not been to the city in five years, right after Tyler was born, even though New York is about an hour away from me.

On Saturday I remembered why that was, as every system in my body, gastrointestinal, joints, muscles, brain, etc. screamed in agony and protest.

But first, let me tell you how I got that way.

On Thursday we were supposed to go to my cousin’s house for a Jewish New Year celebration.  It was early for the kids, the dinner was at 3:30, which is good for the kids, but is right in the middle of my nap time.  I am at the point where if I do not take a nap, I cannot make it through the day.  I mean, I will involuntarily fall asleep at some point or get a major headache or be sick to my stomach if I do not lay down.

I couldn’t picture getting through the day just continuously drinking coffee so I laid down for an hour and a half, but when that alarm rang there was just no way I was getting Tyler and I ready and sitting through a usually really good time, you know?  I called my cousin, I can barely remember the conversation, and passed on our regrets.  He is a great guy and understands my last minute cancellations.

And then my feet and hands began to swell more than they already were and the nodules made themselves known.  I have this topical cream that I rub into my joints and Grant was rubbing my feet.

And then came Friday.  New York City Day, Tyler’s First Time in New York, Going to the Museum of Natural History.  Grant was looking forward to it even more than Tyler was.  To disappoint them and say I could not go was not even in my realm of thinking.  My feet may have had lumps in them, but I was going.  I find I can walk more when I bandage my knees. We were going to try to minimize my walking, by taking a cab to the museum and getting a wheelchair for me.

But it was still more walking than I do in a week; walking from the parking deck to our train station, walking through one of the largest train stations in the world to get to a cab, and walking up to the entrance of the museum where I could finally get a wheelchair.

Yes, there was a damn good reason why I had not been to New York in five years.  And by the way?  It was like I had never been away, New York will never change.  I’ve either lived in one of the boroughs or been an hour away from my New York my whole life.  I have been everywhere I need to go, most of the museums, Greenwich Village, SoHo, a few Broadway plays, seen all the tourists spots when I was little or when I was older with visiting friends.  As far as I am concerned, from where I painfully sit now, I never need to go back there again.  I still think it is the greatest city in the world, a must see in your lifetime, but I have pretty much done New York and the next time there is something in there I want to see, I will just buy a book on it and become an armchair or bed traveler.

So even though I was in a wheelchair, I can walk.  But just because one can does not mean one should.  

Grant was particularly looking forward to a the newly refurbished exhibit on Early Man, but particularly the tools and drawings of early man.  I had forgotten what being in a museum with Grant is like.  When he comes for something in particular, you could just leave him there for the next three hours and see the museum by yourself.  Tyler was whining and rightly so as most people would find this extremely odd behavior, especially with a five-year-old in tow. I had no choice but to show Tyler other parts of the Early Man exhibit on foot and then on to Gems and Minerals as Grant was still riveted to ONE PART OF ONE EXHIBIT.  I had to take Tyler to the bathroom on foot.

Grant was very good about pushing me through the museum, I never had to walk anywhere far, but the little walks added up.  I walked through the special exhibit of “The Largest Dinosaur Ever Discovered” and through the gift shop.  The last thing on our “to see” list was the special frog exhibit. There were strollers parked outside the entrance to the exhibit and we asked if we could take a wheelchair in.  The woman taking our tickets asked me, “Can you walk?”, which I thought was kind of a strange way to phrase things, and said that it was awkward having the wheelchair in the exhibit.

So although the exhibit was small by normal people’s standards, I walked the whole frog exhibit.  I saw the most amazing frogs ever, but again, next time I will just buy a book.  I was hurting so much. Walking with nodules on the soles of your feet is like walking on rocks inside of your feet.

And then Grant wheeled me to the exit where I had to do the same amount of walking I had to do to get there in the first place.

Yesterday I just got sicker and sicker as the day wore on.  I spent most of the day laying down, trying to sleep through the pain and nausea.  I was completely useless.  Gone went my plans for the day.  No karate for Tyler, no food shopping, no buying a birthday gift for a kid whose birthday party is today.  I was too sick to blog, thus the title of this post.

I told Grant that Tyler was of an age where he could handle taking him to New York by himself and that I would not be going in the future.

It is a sad life but honestly I feel better and feel almost good and well, if I stay at home and do nothing.  When my mother comes and does all the cooking and dishes and cleaning, I actually feel like I am on the mend.

I am at that point where were it not for Tyler and Grant I would choose to be completely housebound.  I’ve got the internet, I’ve got a television and an iPhone. What else do I need?

Who’s with me?

If I never had had a child, and had someone do my hair and makeup every day, I would look just like her.

The post The Day After the Day After first appeared on Mama Sick.

As I got older I still loved summertime.  That freedom (except for when Required Summer Reading came, let’s not even go there) to play all day, watch Gidget , Get Smart, and all the other reruns I could ask for, to read the books that I wanted to (Judy Blume books, read about ten times each book, anything by Paul Zindel, and Harriet the Spy, another book I read ten times) and the days that never ended, being able to play outside until nine ‘o clock at night.

I loved my summers so much that even now, as the weather gets cooler and with only two more days left to go, I still shiver when it is “Back to School Time”.

Of course, this was probably the most unique summer of my life.  For the first time ever, Tyler stayed home with us, except for four weeks of camp that were three hours a day long. It was easier having him stay at home, by the time I would get back home from dropping him off, it was practically time to pick him up!

I have to say that when Tyler graduated from pre-school at the end of June, with Grant and I both disabled, I didn’t think we were going to “make it” with him being home all summer.  It truly was the first summer he would be home with us, as he was born in September so by the next summer, he was already in daycare.  How was I going to hide my pain from Tyler? How would Grant lay on the couch all day, crippled by depression and anxiety?  How would I hide my meltdowns when I got bad news, from either the Social Security Administration or another diagnosis?  How would I just make it through the day?  There was just NO WAY this was going to happen.  But it had to, because Grant and I could no longer afford daycare/camp/preschool, or whatever you want to call it.

I was not optimistic.  I thought that we were going to have to end up putting Tyler in some sort of camp, that the money was just going to have to be found, in some way.  That this was just not going to work.

With just two days left until my son starts his first day of kindergarten, I can now say, “We did it! We made it!  Woo hoo!”  

I feel really good and proud about Grant and I s’ abilities to stretch our limits to the max.  I really think we gave Tyler a good summer.  A big worry that I had was that Grant and I both do not well in the heat.  Depending upon if you want to look at it as a blessing or a curse, Tyler, due to some of his sensory issues or perhaps his OCD, abhors water; the beach and the pool, and my pediatrician told us not to force him into the pool or the ocean, that it would be doing more harm than good.  So, I guess you could say, none of us were into many outdoor activities during the super hot, poor air quality summer of Central New Jersey.

When Tyler was not at camp, which again, was most of the summer, we lived at the library.  We are fortunate enough to be in a township that has one of the greatest local libraries as far as children’s programs go.  Tyler “read” to a therapy dog, which got him over his fear of dogs (!), joined the Lego Club, did arts and crafts and “took in” an hour long program on butterflies.  All free!  He also did karate.  We do plan on continuing library programs and karate, but we will see how it is all going to work once Tyler’s school schedule starts.  We are blessed with full-day kindergarten!

I was also worried about how Grant and I were going to get our work done.  Grant, if you do not know, is a freelance writer, I am a voiceover artist and this little blog that you are reading requires a lot of attention, more than I would have ever imagined.  Grant and I definitely made less money this summer because we had less time to devote to our work, but any decent camp around here is about a grand a month (I know your mouth might be hanging open if you do not live in the tri-state area of New York, New Jersey or Connecticut) so we were probably still ahead of the game.

My routine would be to get up when Tyler got up, make my coffee and get right on the computer, of course tending to Tyler’s needs like a breakfast snack, as he doesn’t like to eat a lot when he wakes up, breakfast, and any bathroom…”issues” that he needed help with.  I would also try to throw in some housework, a laundry here, a dishwasher run there.  I worked to 1:00 every day and then it was quitting time with me devoting the rest of the day to hanging out with Tyler or getting out to do something.  We did see The Cars 2 (Tyler’s first movie!), Winnie the Pooh, and The Smurfs. Tyler did get outside during camp, and he did go to the park a few times with my mother and Grant and even me!

I have to say that overall he was very good for someone who is about to turn five, with the exception of him still needing to learn that when we are on the phone you do not talk to us. That “when I hold up my hand like a stop sign, it means you should not interrupt me” solution is not quite working out.

Because we didn’t have many plans, except for doctor appointments and special programs at the library, we had a lot of flexibility so I was able to keep what I like to call “Lupus hours”. That is, sleeping when I want to sleep.  Grant was for the most part able to take over when I needed a nap or be up when I needed to go to bed for the night at 8:00.  Grant likes to joke that due to our disabilities we make one full parent together, but I do think we managed pretty well this summer!

And now with just a holiday separating us from when Tyler begins kindergarten, I am beginning to get misty.  I am actually going to miss having my child home so much with me, because at almost five, he is able to do a lot of things by himself, and with some exceptions, he is a joy to be around. Don’t worry chronic moms, or just moms with young children…it DOES get easier!

Those “back to school blues” are kicking in.  Physically, Autumn is the worst time of the year for me because of the drastic changes in weather.  And then Autumn leads to Winter, which is a bummer all around.   And now, my little boy is starting what will be the first of I hope at least 17 years of school for him.  He is nervous, and so am I.

I guess you can say that for the three of us, we are all going back to school.

The post The Summer of Chronic first appeared on Mama Sick.