Bad, good, or neither

This morning, I went up to the rec center.  Alone.  I tried to talk with the aquatic director, but learned something interesting.  Something that gave me hope that there is a reasonable explanation instead of out right discrimination with the swimming lesson and Obsidian thing.  There is a new aquatics director.  However, she was not there today.  I explained to the woman at the front desk my issue.  Her comment was essentially, "That sounds like a problem"  Which I take as a positive comment.  I will see where this goes.  I left my name and phone number to be called back about.  And if I don't get a call, I'm there often enough, I will run into her.  That is my "good".  I really try to be optimistic, and really try to believe that people do not so blatantly discriminate.

I have been thinking about what I'm going to say to Obsidian when the questions start.  And knowing him, they will.  I have some time, as for the next 3 weeks he will be in gymnastics class at the same time and will not see the little girl in Pyrope's class.  But Pyrope's swimming class has 3 more sessions after Obsidian's gymnastics is over.  Obsidian does not miss much.  He knows he doesn't go to swimming lessons at the rec center because he is too young to take them there.  He wants to be in a class with Pyrope and other kids he knows.  Jet and I are very careful with our wording of "too small" and "too young".  And we have consistently said "too young" for swimming.  And knowing him, he will realize the other little girl is about his age.  (If something has a height requirement, we tell him he is "too small", if it is because he is not old enough, we say "too young"... once again we are somewhat anticipating him always being very small but we don't want that to stop him or for him to use it as an excuse).  I want to be honest with him.  I want to teach him to defend himself.  There is a good chance that his height will remain a lifelong issue for him.  But he is 2.5 years old.  This potentially will be the first time I will have to directly address this with him.  And I'm not looking forward to it.  I want to set a standard tone from the beginning.  A positive tone, but one that does not put up with discrimination.

The bad is my MIL.  She is feeling worse since her last round of chemo.  She is not beginning to feel any better, and it has been over a week.  Most bothering, she is short of breath quite a bit (even just talking on the phone) and seems to be retaining fluid.  She is thinking of stopping chemo at this point.  Very shortly after it has shown signs of improving.  It is a choice.  And only hers to make.  But it is hard to watch.  Most specifically, it is hard for me to watch Jet have to go through it.  I don't interact with my MIL much.  We (the kids and I) see her once a year now.  The kids talk to her on the phone occasionally, but she is almost more abstract to them than a person involved in their lives.  I find myself praying for peace and acceptance.  I have a feeling at this point, that is the most I can do (I'm willing to do more, I just don't think there is anything to be done).

Standards

Today was the closest I've come to uncontrollably A) losing my temper B) crying or most likely C) both in a long time.  I didn't.  But it was close.  And in many ways I wish I did.

It was back to swimming lesson drama.  Inadvertently, Obsidian was allowed to sign up for swimming lessons at the rec center with Pyrope this past fall.  The first lesson, the usual teacher was away.  The substitute did fine with the kids.  Second lesson comes, normal teacher takes one look at Obsidian and says he can't be in the lessons.  He is too little, then revises it to he is too young.  Substitute teacher winds up coming back for the remainder of the lessons and teaching Obsidian and one other boy that was supposed to be in the class (as his skills were far below everyone else's, including Obsidian's).  I'm told that I can't sign up Obsidian for this teacher's class, but I can try the Saturday morning classes.  Saturday morning classes are much much louder as there are multiple classes going on in the pool at the same time (weekday classes, it is the one class, and a few people doing water exercises, at the most).  First Saturday morning class goes fine.  Second Saturday morning class comes, the kid sitting next to Obsidian on the wall pushes him, and Obsidian winds up in the pool.  There was no harm done, but every time Obsidian is left on the wall with the other kids (next to kid who pushed him in), he cries.  I'm told he is too little and I have to wait until he is 3.5 years old and not any sooner.  That is the policy, they only let him try because of the previous mistake (which I was told would not happen again).  I eventually find a place that will take Obsidian for swim lessons despite his age and size.  It is comically watching him in his class as he is so much smaller, and at least 6 months younger, than anyone else.  He loves his swimming class.  The classes are a similar quality.  But I have to drive 20 minutes instead of 5 and pay twice as much.  Not to mention the fact that I have to take Pyrope to the one set of lessons and Obsidian to another, instead of the 1 trip it would be to the rec center (the lessons are set up differently in that there are a lot of levels where Obsidian is now so they would be in different levels that are not offered at close to the same time, and at the rec center there are less levels so they would be in the same).  But if the rule is not until you are 3.5 years old, it is the rule.  When Obsidian is old enough, I was going to switch back.

Today was the 2nd class in Pyrope's swim lessons.  There was a new little girl in it.  She is 2.5 years old.  Another mom (who knows the Obsidian swim lesson story, as her daughter was in the class this fall) asked.  The teacher (same one who flat out refused to let Obsidian even try with her this fall), said that the little one will try to copy from the big kids, and the big kids will try to help the little one so it will all work out.  I nearly lost it.  This child has a good 4 inches and 5 pounds on Obsidian, but that is it.  She is a cute little thing, and did fine in the class.  She doesn't have as many skills as Obsidian, and is not as used to being in a group as he is, but she did fine.  I was furious.  I wanted to yell at the teacher.  I wanted to cry.  I didn't want to make the situation worse.  I didn't want the mom to think I was mad at her (as I'm not, and we live in a small community, so chances are our paths will cross many times in the years to come).  I stopped and thought.  And decided I was reacting way too emotionally to be constructive.  And then I was thinking more.  I told the two moms that I know that I needed to go for a walk (we aren't supposed to leave the viewing area during swim lessons, but this was too much for me).  I came back and was able to sit through the rest of the lesson.

I've cooled off some.  I'm thinking more clearly.  Tomorrow, I will go to the rec center, without my kids with me.  I'll talk to the aquatic director (who will be there then, but was not today).  I'm not even sure what I'm looking for.  The class is limited to 4 kids.  And with the little one, there is now 4.  This is the last once a week session before summer.  There is one twice a week session left after that, but I was unsure if I was going to do it with Pyrope anyhow.  I don't do swimming lessons during the summer for the kids. 

I have to say something.  As it is wrong.  Obsidian and the little girl are very very similar, apart from size.  I was told Obsidian can not do swimming lessons because of his age and size, not his ability.  This girl proves that it is not his age that is stopping him.  Which leaves his size.  Which is discrimination.  I can not let this just happen.  Even if it doesn't change things for Obsidian, that is not how things should be run.

Ready or not -- Updated

Ready or not, today, Obsidian is starting growth hormone therapy.  Tonight, a nurse is coming to the house to do the training.  He does not know this.  As he is 2.5, I don't know how much he would understand if I tried to explain.  I'm guessing he would understand the basics of "You will now get a shot everyday.  For always."  He knows what shots are as I have type 1 diabetes, so it is something that has always been part of his life.  He hasn't been the one getting injections, but the idea of shots is a concept that he sees at home.  He knows how a shot feels.  I don't anticipate Obsidian is going to be happy about this.  I don't know how much he will understand how these shots will (hopefully) help him grow big and be able to play with other kids longer before getting tired.  I'm guessing he will understand more of it than we expect he does.

I'm not even vaguely concerned about the training.  I've questioned myself about this, but each time I come up with the answer, nope.  I don't think it will be much different than using an insulin pen.  I know how to give injections on both myself and others.  I've done it regularly (to both myself and others).  I haven't given them to anyone who has been fighting against it.  I hope I don't have to get too much experience with that.  In the back of my head, I'm thinking I might get a lot of experience with that (but that is an entirely different issue than the training and the mechanics of how to give an injection).

I'm worried it won't work as hoped.  I'm worried that Obsidian will be one of the unlucky ones that have one of the serious side effects (largest one being increase in intercranial pressure... partly because this is just bad, partly because Obsidian doesn't have the verbal skills to completely express the symptoms accurately as soon as they start appearing).  A dislocated/broken hip would be bad as well.  Then past the side effects part, I'm worried he won't start growing as hoped.  There is not blood test that we can see if he is working right away.  It is simply to wait 6 months to a year and see if he growth velocity has improved.  I'm worried that ped. endo that we are meeting with later this month will not agree with this course of action and we will have to decide.  I'm trying hard to "not barrow trouble".  It is hard to not get really excited with the idea that the growth hurdle for Obsidian is about to be passed, I'm afraid of getting too excited about growth to be crushed months from now when nothing has changed.  Which is obviously a possibility.  Particularly since Obsidian is not a "textbook" growth hormone deficient (GHD) kid.

Whether or not if I'm mentally ready for it, today is the day.  I don't think I would every be fully "ready" for this leap.

UPDATE: So training was all of 15 minutes, if that.  Obsidian did alright.  When he realized he was about to get a shot, he tried to grab it out of my hand and said "No want it.  No. Don't"  I did it, and then he stopped fussing and was smiling at me and the nurse and talking something about trains and fire engines.

Grief

I've been/am in a foul mood today.  My temper is short (which can be a chronic problem of mine).  After overreacting an embarrassing number of times to something one of my boys did, I'm sitting and thinking to why I keep doing this.  I had a short fuse as a child, but for the most part I can control it.  Typically it is if I'm under stress of some sort that I can't.  Obsidian is napping, and Pyrope is as well (which is very unusual, and come 10 tonight I'll be regretting it, he is snuggling next to me on the couch so I doubt the real sleep will be long).

During ice skating lessons for Pyrope, Obsidian asked to wear skates and try.  I've been encouraging this.  He didn't have the strength or balance to stand up on the skates without help, but he enjoyed himself for 20 minutes and was trying with me helping.  I got home and there was a message on my answering machine to place the order for the growth hormone that Obsidian will be starting.  Listening to the message on the answering machine, I couldn't figure out the phone number to call.  Part of it was the lady was just talking fast, the other part I know was my dyslexia (which once again only really significantly affects me at this point if I'm really stressed).  After trying at least a dozen times, I decide to just put Obsidian down for his nap, then call the general mail order pharmacy line (which it is a specialty item, so there is a different number, but I knew that eventually I would be connected to the right spot if I called the general line).  23 minutes later, the medication was ordered, it will ship today and be here sometime tomorrow, council by the pharmacist (which was mainly going over all of the possible side effects, some of which are scary, particularly with someone's Obsidian's age because he can't communicate as well as an older child or adult), and called a second program so the referral for the nurse to come out to our house to train us (mainly me) on how to administer it.

I really hope that this helps with Obsidian's growth issues and helps with his gross motor delays as well.  I'm scared that they won't.  I'm scared that he will have one of the serious side effects.  I'm scared that this won't help.  I'm scared that some of the other signs that Obsidian shows that are not typically associated with GHD really should be cluing in to the doctors that this is not the problem.  I'm dreading Obsidian's reaction to having a shot every day.  He will get over it, so this is pretty far down on my list of worries.  I'm sad that even if growth hormone therapy works, it is really a patch more than anything else.  It is not "fixing" anything, just replacing something on the outside.  I'm sad that if it works, there is a very good chance Obsidian will have to do this every day for the rest of his life (if not for the rest of his life, at least through his teenage years). 

The biggest thing is that underlying all of this is that I'm sad, a level of grief, that my child does not appear to be dealt one of the better hands health wise.  It could be far far far worse, but it is still not what I had dreamed and prayed and hoped for him. 

I know that after this period of grief, there will be some level of acceptance.  If I work towards it.  Most of my fears will abate.  Obsidian will be used to the shots.  My fears of side effects will fade.  We will know if it is working or not.  This will not "pass", but it won't feel as sharp as it does today.

Wordless Wednesday

6-9

The weather has started getting cooler here.  So I got out pants for the boys.  The pants that fit Pyrope well in the spring are floods.  The ones that were long, barely fit for now.  They will be too short come Christmas time if not sooner I'm guessing.  No big surprise.  I then went to put on Obsidian's 6-9 months pants from the spring.  Hoping that they would be too small, not even being floods, but just too small.  I was day dreaming about having to get out the tubs of 12 month clothes (which I will have to anyhow because that is the size shirt he is wearing).  Um, no.  The 6-9 month pants fit well.  With more room to grow in than Pyrope has in the pants that were too big for in the spring.  I was so sad.  Obsidian has been making so many gains lately.  He is 20 lbs (and amazingly has never dipped below that point since reaching it, knock on wood).  He has started pedaling a bike (with some help, but at the beginning of the summer, he literally didn't have the ability to sit on it without falling off).  He has even taken a couple steps down stairs without holding on to anything (with someone right in front of him).  There have been a few times that he has walked down the stairs holding the rail without anyone around.  I thought, or I was hoping, that some corner had been turned and he was catching up.  All of the worries and concerns I've had would be memories.  A chapter in his and my life that I would look back on and think "Hmm, I wonder what was happening then" as a curiosity that had resolved itself and no longer needed my attention or concern.  At least for now, this chapter is still open.

The big 2-0

Obsidian finally hit the magical weight of 20 lbs*.  It took him 6 months, literally, to gain this last pound.  For a child who is 25.5 months old, 20 lbs is still not much.  He is the weight of your average 8 month old, and height of your average 17 month old.  The reality of it is, there is nothing special about 20 lbs in particular.  Since Jet and I believe in rear facing car seats as long as possible because it is the safest way to travel, Obsidian being 20 lbs doesn't mean anything in particular.  Even giving a larger dose of ibuprofen happens at 22 lbs.  Nor am I convinced that Obsidian won't dip below 20 lbs again, most of the time when he gains some weight, he then loses a little.  Also because of his 15q11.2 microdeletion, I worry about him suddenly becoming morbidly obese between the ages of 2-4.  So while I want him to gain weight (and height), I don't want him gaining weight too quickly at this point.  Then he will be looking at strict calorie restrictions and how to not develop an eating disorder because it will be the only way to prevent morbid obesity at a young age.  That would be such a cruel twist of fate.  I keep coming across doctors (from various disciplines) that want to try to get more calories in him.  Since he eats a lot, and I already use many strategies to maximize the calories that he does eat, the suggestion of an appetite stimulant comes up.  At this point I will give him whatever food he requests (within reason), but I just don't have a good feeling about giving him an appetite stimulant.  This is the child who can eat 3 slices of pizza and a chocolate milk, and then be asking for more food 2 hours later.


***Note: 20 lbs is 9 kg