On the doctor's advice...

We have found out how to handle success with Connor.  We change directions completely.  After years of battling his lack of weight, we've had to move away from overloading his food with calorie additives.  His regular doctor's appointment was yesterday, and he has gained another 4 pounds, and developed a fat pad (medical term!!) in his abdomen! 

Our doctor asked, "How is he?"

"He's fat.  FAT.  We have to fix this," I replied, and pulled up his shirt to show the gut spilling over his waistband.  It was nice, for once, to worry that he was too fat instead of too skinny.  Very new for me.  We've decided to back down on the additives because we don't want him getting too heavy for his physical therapy and his mother to maneuver him around.  So now he's not exactly on a diet, but a close approximation.

Unfortunately, I also had this experience at the office: as I pushed his stroller back through to the pre-exam room, a nurse said, "Oh, I wish I could be pushed around in a stroller and sleep all day!"  I don't doubt for a second she was trying to be nice.  Unfortunately, it was a complete fail.  My upbringing kept me from spitting back, "Well, I wish my son could walk."  Instead, I made a non-commital noise, and got him safely weighed and measured by his nurse, who knows well enough not to say stupid, thoughtless things to parents of special needs children.  I did start the appointment with the doctor telling him about the interaction, because I felt he should know.  I mean, what if they started losing patients because they employ a nurse who doesn't know "acceptable" from "offensive"? I apologized for being the bearer of bad news, but told him I felt it was important to provide the information and feedback.  Then I cut the tension by telling him that it was awkward because Connor wanted to get up and defend my honor, but he couldn't.  I got a smile for that.

I hope our doctor knows how much we trust him and rely on him.  He has been through thick and thin with us (now literally!) and we are so grateful for all the advice, care and advocacy he has provided for Connor.  I know he would do the same for our other boys, but I am relieved that they do not need extra advocates at this time. 

When it rains...

Last week, one of Connor's classmates lost the battle.  It's the first time we lost someone in Connor's circle, and it's a gut punch.  They were classmates last year, and they were as close as kids like them can be.  My heart is broken for her family.  I can't even find the words to write in a condolence card to them.  My heart is aching for my son, who may or may not know what has happened.  And it's all in the background, because we don't want to make a huge fuss over it to Drew and Tucker.  While they are aware that Connor is different and will always be, and will always need care from another, we don't want to introduce that his lifetime with us may be shorter than most.  It's a subject we practically can't discuss ourselves as his parents.  But that's the fact, in the plain light of day.  Connor was expected not to live past 2 years, really.  And now he's 9.  We are on borrowed time with him.  When you have children, there are a lot of new worries that pop into your life.  With Connor, the worry that lies just beneath the surface is "When will he pass away?  Will his brothers be old enough to understand? Frankly, will I be old enough to understand? Can I be as strong as I will need to be for our lives to somehow continue?"  Along those lines.

I think it's starting to bleed through in my parenting of my other boys.  Drew has already asked us why we love Connor more than we love him and Tucker.  He was mad at us, and he knew that question would upset us.  Well played, sir.  But he already knows that if Connor needs something, we make it happen then and that he and Tucker have to wait until we are ready, and that there are things we cannot do because of his older brother.  Like go as a family to an amusement park.  Or almost anywhere are a family. 

I am wretched with the boys sometimes, because things have to get done and sometimes it's only me (and some nights, it's only Lee) who is there to care for them.  It's no fun for anyone.  I have drained the life out of my son's lives.  How do I get it back??  I don't want to be wretched.  I don't want to tell people everything is good when it isn't (though I will continue to do so because that's what's socially acceptable for the time being).  What I want is for us to find happiness in the every day again.  It's all well and good to have a vacation now and then, but the day to day is what needs to be better.

Birthday 2013

As many of you noticed on my last posting, we struggle each year at gift giving time to come up with ideas for Connor.  Since he does not excel at expressing himself, it's hard to determine what he will enjoy and what he won't.  And the many activities that are adapted for those with disabilities are usually not adapted *enough*.

But no more moping!  Instead, here are my thoughts about the birth of my first son, and pictures of him on or near his birthday through the years.

Connor, on the day you were born, I spent a long part of the day lying down.  Normally, that is fantastic, but this time, it was because I could not get up!  I had to have drugs that numbed my lower body so I could continue working towards giving birth to you without becoming exhausted.  Since you started to come at 4:45 am and you finally CAME at 7:57 pm, that made for a very long day.  I was not allowed to hold you for almost an hour after you were born.  You were held by the nurses, and your father, and your grandparents, but not by me.  I was too busy demanding to hold you and wolfing down food.  And then they handed you to me and I became a better person...just like that.  All the anger and rage I had carried around in my life which wasn't really that bad to begin with just went away.  I had you, and you were there with me, and you were so perfect, and despite knowing that I had spent the previous 39 weeks building you in my body, it only just occurred to me once you were in my arms that I had built you and that you were miraculous.

It is good that you helped me let go of anger and rage.  I do not know if we all could have survived your infancy if I had not.  Your first gift set a basis for me that made me be a better mom to you than I could have thought would be needed.

First birthday

 Two...

Three...

Four...

Five...

Six...

Seven...

Eight...

The night before you turned nine, your brothers made you gifts and wanted to take pictures with you.  For all the things you cannot do in this world, you have made compassion and strength a daily life component for Drew and Tucker, and they love you without question. 

 

Happy birthday, my special boy.  I love you with my whole heart.

Birthdays...

So Connor will be nine at the end of the week.  We are utterly hamstrung.  We have no idea what to give to him for his birthday to commemorate this incredible day.  Since he doesn't seem to get much joy out of toys, and struggles to interact with them at all, getting more toys that he can't or won't use is not the solution.  He has more clothes than he needs.  He has equipment he needs.  I found something I thought would be lovely, and it cost $6000.  You read that right.  $6000, not $60.00. 

Ideas, dear readers?  When Connor was a baby this was easy.  Now he's big, and I am utterly without inspiration.