Monday, August 27, 2012

Idiopathic Thrombocytopenic Purpura

That sounds scary, right?  It's what Anthony has.  I am writing this while sitting on the floor of the bathroom in Anthony's hospital room.  Mike brought him here this morning, after Anthony woke up with black sores in his mouth and on his lips.  GOOD LORD.  I can't even believe it, still, even after typing it over and over.  It was scary.  I immediately started googling stuff but I just knew it was going to be leukemia, I was going insane, planning my funeral clothes, practically!  I know!  I know it's horrible but I was freaking out.

I took the girls to their first day of preschool, and then brought the baby up to the ER, where almost immediately the ER doctor told me his white blood cell count was fine and that he didn't have leukemia.  That's when I really started to cry, the relief of something not happening is often more emotional for me than something not happening.  Anyways, (shouting out thanks) my mom and my Aunt Barbara came and got Felicity and Mike and I sat here with Anthony while we waited.

We got admitted around 12:00, I think, and then boy oh boy did we wait. We had only talked to a resident before that, he talked to us about ITP and told us there were treatments for it.  By this time, I had of course posted on Facebook about it and my friend Joey posted about how it seemed similar to what her son had several years ago, which of course was ITP.  Life is weird, right?  Anyways, finally finally the ped came in and talked more to me and looked at Anthony and then the hematologist came in and said we could either a) do nothing, b) give Anthony steroids or c) give him an IV treatment which might fix it forever, but would at the very least up his platelets so that he wouldn't be in danger of INTER CRANIAL BLEEDING like he is now.  We couldn't do a) nothing because Anthony is too "active" (this means crazy, he was standing on the couch when the hematologist came in, ha!) and he could hurt himself and then have internal bleeding.  So.  That's out.  Also b) steroids are out because we are not interested in possible side effects which include increased agitation and possible psychotic behavior.  My brother Larry took steroids for an auto immune disease and thank God, never had any side effects but we can't risk it.  So, it's c) the IV treatment and God willing, they'll do it tonight and observe him for 24 hours.

Grateful.  I'm so grateful that it happened today, when the girls started school, so they were covered from 9-2.  I"m grateful my mom and aunt came to get Felicity.  And I can't even say how grateful I am to all these friends of mine who texted me and called and said on Facebook that they were praying.  I swear I can feel the prayers and love from all over the place.

Thursday, August 23, 2012

Lovely and Amazing

When I went to pick up Anthony today, it was his therapist Kassi who brought him out.  She is usually with him in the mornings but she and Mary have switched a few times this week.  Kassi is the therapist who brought him to camp and she is just great with him, and so thoughtful with me, she texts me pictures of him when he is doing something great, like when he was on the HORSE at camp, or a cute picture from when they went to the state fair.  Anyway, she is nice and it was nice to see her.

I was a little late and she came right out and said "Anthony had an amazing afternoon!".  Felicity was crying and I (proud moment) found a bag of Goldfish in the car and gave her some so she stopped crying.  Kassi said that they were just sitting there this afternoon and Anthony got up and came over to her and poked her on the arm and said "p p p p p" which is potty and they went and then, she said, "he took the biggest crap ever!".  Ha!  I am not a person who likes scatological talk but I loved hearing that!    I said, oh that makes me so happy, I can't wait until we get there at home, too.  So I got in the car and I said how I just felt like he was doing well and she said she thinks he's just made leaps and bounds over the last few months.  She said - I can't remember what she said, exactly, but she said that he thrills her every day, and I said, through tears of COURSE, that I'm sure that she thrills him too.  Thank God I am always wearing sunglasses, sheesh.

I really feel like we are really getting there, I told her.  I don't know where it is, but I feel like we're getting there!  It does make me cry to think about it, because if he could just tell us, any way, what he wants or what he needs, oh my God, what else would I ever need, in my whole life?  And now of course I think that maybe this is the miracle I've been praying for.  Oh, life.  It's too crazy, too much, some times, how incredible it all is.

THEN I got home and I got my Crappy Day Package in the mail.  Typically they have been a box with various fun things in them, so I was intrigued when the package said "fragile" and it was a small box, it fit in my mail box!  So anyways, I opened it because I have no self control, and they are all kind of crappy days around here lately, and I found this picture and a note that said that this reminded the sweet sender of Anthony Joseph.  And of course, it really DOES seem reminiscent of Anthony, doesn't it?  It was so great to get it today, when I was already feeling all warm and happy and hopeful about him.

So anyway, I never say this, but I think people are really lovely and the world is really amazing.  I am so bullish for the future, I hardly even know who I am anymore!

Wednesday, August 22, 2012

A friend of mine had a baby recently, her first, and I keep thinking of when I had my first baby.  It was never a situation for me where I felt like, well anything like, "this is so great!  I am so lucky!"  I felt like when I was at IU that first semester and people kept saying to me, "isn't it awesome?  Don't you love it here?" and I would think, NO.  No I do not love it here.  Mike and I had the same first semester at IU and I always joke that if we had met there, we never ever would have gone on one date because I hated people like him, people who LOVED it at IU and thought it was AWESOMELY AWESOME.  I think the difference was that I was happy where I was, I was living in NJ and going to a community college for what I thought would be two years, I had jobs and friends and an interesting and fun life that happened to include going to college.  At IU it was like there was NOTHING except college, all the friends and the jobs and the - everything - was in one place and if you didn't like that place, well, you were screwed.  My sister and I didn't like it and so we were screwed.  So we did one semester there and then we got the hell out of Dodge (Bloomington) and we went back to Indianapolis and finished up there, where we could have jobs, friends, etc., stuff outside of just college.  Also we missed our mommy and daddy but WHATEVER. Ha!

My friend who just had the baby said something that I've noticed a lot of people have said, which is something like that she wasn't good at newborns, that it triggers too much anxiety and fear.  I always think, who?  Who among us is good at being anxious and sad and tired all the time?  Who can thrive in such an environment?  Firemen, maybe?  Racecar drivers?  Maybe, but the analogy doesn't work once you consider that the person's CHILD is involved in the anxiety.  Maybe a fireman does great at putting out fires but maybe he's not at his best either if his LITTLE BABY was in the burning house.  A racecar driver might thrive going 200 mph but not if his newborn was in the backseat, rear facing or not, ha!

I always think, I'm so, so bad at this, so bad at being a mother and ENJOYING it.  I am pretty good at being a mother, keeping them clean and dry and loved and fed and everything but I am not good at enjoying it.  I'm not good at trying to get someone to go to sleep who doesn't want to go to sleep, I'm not good at being super tired all the time, being in physical pain from nursing, or whatever, but I don't apologize for it anymore, I'm sick of it.  I think YOU are the bad mother if you pretend that it's awesomely awesome to change dirty diapers and never sleep and nurse a baby, in fact.  Take that!

I think that it's the worst part of being an old mother.  I think those warnings about how your baby could have down syndrome or whatever are total and complete poppycock.  I think the real warning to mothers who are OLD like me, having their first baby, should be that you are about to have your whole life change, and it's going to happen in an INSTANT.  I can think of no other experience like this - like I got married and my life changed but I dated Mike before we got engaged, we were engaged before we got married, it's completely different.  My life changed when I moved to Indiana, but I was with my whole family and Laura and I were going through almost the exact same experience.  But when I had Anthony, my whole life changed and I had never even MET HIM BEFORE.  And he wasn't THAT NICE OF A PERSON, frankly.  Maybe when you are 22, you are more flexible and you don't notice so much that your whole life has changed because maybe a lot is changing anyway - you're maybe finished with school, you got married, etc.  Who knows.  It feels like it's harder at my advanced age, anyway.

This is sort of pointless but it's just to say that if you just had a baby, and you think it sort of sucks, you are right.  But it will get better and then it will all be a memory and then probably you'll forget and start telling people to 'enjoy each minute', ha!

Wednesday, August 08, 2012

What's So Great About Anthony?

Yesterday I had a thought - I can feel the bad things in my life immediately.  I was taking the girls to swimming and it's such a drag - it's been incredibly hot and so sunny and every time I get Veronica and Felicity out of the car for swimming, they act like I am placing them on the surface of the sun.  Or Mars.  Is anyone sick of Mars?  I know I'm a bad American but I don't give a HOOT about Mars.  Anyway.

So I was thinking, as usual, this sucks and I hate it.  Right there, in the present, I hated it.  And I was thinking I wish I could feel the good things in my life, the luck that I have, in the present the way that I can feel the bad stuff.  I know there are good things but it feels hard to appreciate them.  I find it annoying - more than annoying - when people are like "LIFE IS GOOD, IT'S SO AWESOME TO BE ME! on Facebook, but who's to say that I can't just feel that way without making a big announcement about it?  It's the announcing/bragging that I find obnoxious, not the actual feeling.

Anyway I complain a lot so I thought I'd do a quick round of What's So Great About Everyone to get things back in order.  So, without further adieu, What's So Great About Anthony:

  • There is no doubt that he is a genius.  He is doing so well with this PECS thing, after just one week, he has been flying along meeting his goals at school.  It's not surprising, Mike is really smart and I assume genetics has to play a part, right?  Anyway, genius.  
  • He is gorgeous.  Maybe I'm shallow but it's nice!  His teeth are coming out and in crazy fast and he is so good looking through it all.  Years ago, my friend Susie and I had this friend Susan.  Susan was gorgeous but kind of a wet blanket.  Susie and I were super fun and always had a great time but we'd go out with Susan and it was a real drag!  We were talking one time about why she was so boring, what gives, we wondered?  She was a nice girl and we were in New York City, in our 20's, why is it so hard to have fun with her?  Our friend Jeannine said that Susan just never had to work at anything.  Jeannine said, brutally honestly, that Susie and her and I weren't as good looking as Susan so we had to work harder to be well-liked.  Jeannine said that we three had times where our weight was up, or we were having a bad hair day, or whatever, and so we knew how to rev it up a little bit, personality-wise, in order to get people's minds off our failings.  I think it was true, too!  Anyways, if Anthony ever suffers personality wise, like if he's having a tantrum or hard to communicate with, I always think, well at lease he's good looking!  Just like boring old Susan!  
  • He has the most excellent hair.  Right now, it's kind of in the pre-Rod Stewart phase and it's a good one.  It's laying down and just barely pokes up but I know in a few weeks, it's going to get really excellent, especially in the morning. 
  • He's so lovable.  I think his therapist Kassi had such a good time with him at camp, his newer afternoon therapist Mary is so proud and happy when he has a good day.  They are firm with him but so, so loving.  I can see a really good example of how to be with Anthony from these girls and it's nice, if unexpected, seeing as they are like half my age and not mothers.  
  • This is weird but he's really been leaving his clothes on.  We are working on so many things with Anthony but this has been the most immediate pain.  I don't want him to be known as the neighborhood streaker, it's summertime and buggy, there's a bunch of reasons I don't want him to do it and he's getting better about it.  
  • I was lamenting to an internet friend of mine years ago, about how it seemed like everything written about how to improve your autistic child's life was for kids so much older than Anthony.  My friend's son was like 10 at the time and she told me she remembered, she said "I wanted to throw myself down the stairs every day when he was 0-5" and it was such a comfort.  I thought, oh great, at least I'm SUPPOSED to feel this way!  But anyway, things are better.  He is calmer and more grown up and it helps.  I am hopeful that this, combined with his genius and how PECS is working for us, means that we are on an upward trajectory.  
  • I just bought him some new clothes and he's super cute in them.  Shallow!  

Sunday, August 05, 2012


Anthony has been working with PECS for one week and it's been going really, really well.  The first day his therapist told me how great it went and I thought nothing of it but by Friday his program manager came out to Mike and said that he is doing really well.  She said that he had FOUR hot dogs for lunch on Friday, that he had requested.  I hate to be so optimistic but it sounds really great.  It seems like for years and I mean YEARS we have been working on stuff with Anthony that seemed like it was for nothing.  Like, he's been looking at things for a certain amount of time, scanning a bunch of stuff and picking something out, etc. etc, and now he's applying what he's learned and hopefully it will help him communicate better.  It feels like we are on the edge of something big.  I hope so, anyway.

He's doing fine, he has really been enjoying the Wiggles lately.  He's been wearing his braces for a few months and although he certainly doesn't seem to LIKE them, he wears them.  I have no idea if they are helping.  He usually hops right back up on his toes when he is out of them.  I hope and pray he doesn't have to have surgery.

My friend Marta belongs to this Catholic group called Communion and Liberation.  The founder of it is Fr. Luigi Guissani and he is, I'm not sure how to say it, but like, he's on the road to beatification or sainthood or whatever order that all goes in.  Anyways, she gave me this prayer card where you can pray to God that Fr. Guissani becomes a saint and you can ask for your own miracle.  SO I've been praying for Fr. Guissani and praying that Anthony gets ... better.  I hate to say gets better, I don't think of him as SICK or WORSE or something but better is the word that I mean when I say that I hope he communicates better, feels happier, learns to live in the world better, you know, it's a lot!  So I hope that Fr. Guissani hears me in heaven and then he can pray for Anthony and then Anthony can get better (you know what I mean) and then Fr. Guissani can become a Saint and then Anthony can be happier and that, my friends, is what I would call a win-win of the highest order.