that time I became an over-sharer

27 Jan

Ya know that moment when you put yourself out there and you are immediately grateful for getting it off your chest and simultaneously regret it because you’ve brought attention to yourself?

Yeah, me to.  I just had one of those on Friday.

I wrote about my son’s current (hopefully) temporary condition.  Then I shared it on facebook.  Then I might have regretted it a bit.  All of a sudden I felt very exposed.  And like I had exposed my child.  In general, I’m not a sharer in person.  I have a hard time talking about things that are meaningful and difficult.  I like to squash everything down and pretend it doesn’t exist.  I told a friend recently that I think that if I don’t talk about something, don’t put it into words, then it won’t be true and it will go away.

That’s obviously not true.

Luckily everyone was supportive and sent sweet notes to me (I shouldn’t have been surprised…my friends and family are awesome).  This is just a healthy reminder for me that I am not an island (right Husband?), and that it’s ok to confide in people (even if the actual definition of confide doesn’t necessarily mean to write it all down and post it on the internet).  In some ways it is like a certain weight is lifted off my shoulders (so cliche).  Another way to say that is what Husband says – problems can get really big in your head, but once you put words to the thoughts in your head and express your concerns the problems don’t seem so big anymore.  They don’t seem insurmountable.  They are handle-able (definitely a word).

11199630656_a72af6d39d_bweight on his shoulders (how cliche can I get?)

Advertisements

I speak in plural

24 Jan

That’s what I’ve had to say quite a bit the last few months to doctors and specialists.  I was taking Holt, by himself, to doctor’s appointment after doctor’s appointment.  Every time I would start to explain something, I would always say “they” instead of “he”.  I had to make sure everybody knew that I wasn’t some crazy person who thought her child was actually more than one child; or that I just randomly speak in the plural.  I had to explain that he was a twin…that we had someone to compare him to.

“He has an identical twin, so I speak in plural”.

Back in July, Husband and I started noticing something funny about Holt.  He started falling.  Not tripping, necessarily, but he would be walking and it looked like his legs would just buckle underneath him.  At first, I thought he was just falling on purpose so I would pick him up.  The boys had just started walking in February, so they were still pretty unsteady.  Win had always been a little further along on the physical development road than Holt, so I just thought it was that.

Eventually, it happened enough that we called the doctor.  I was hoping it was an ear infection, just a balance issue.  Like every other time I thought they (see there it is, that plural speak) had ear infections and was wrong, I was wrong this time too.  His pediatrician couldn’t find anything wrong.  She sent him for X-rays of his legs and blood work.  It all came back normal.  She thought it might be a virus; certain viruses can sometimes cause muscle inflammation and weakness, and that’s probably what it was.

So we waited.

In the meantime, he was getting worse.  He didn’t want to stand up and walk around.  When he did stand up he put his hands on his knees to help push himself up, like an old person (or me, sometimes).  If he was sitting still, he seemed content just playing like that.

It seemed to be worse in the morning, after he woke up, and would get better during the day.  So by the afternoon, he looked different, better somehow.

One morning he didn’t have enough strength to get his sippy cup to his mouth.  Whatever this was was now affecting his arms.

I called the doctor again that morning, but dropped both the boys off at daycare and headed to work.  I think I thought that if I continued on like everything was normal…everything would be just that, normal.

It was a Friday.  I had been at work about an hour and I got a call from the nurse at our pediatrician’s office.  She said that they had called the pediatric neurologist two hours away and that she wanted to see Holt immediately.  I was an hour away from Holt and, at that time, I was the only one that had car seats, so we were really three hours away from this neurologist.  So I left work and drove to get him.  On the way there, the pediatrician’s office called back and, while trying really hard not to alarm me, told me that instead of driving him the two hours myself, to take him to the local emergency room so that they could evaluate him and decide if he needed to be transported or not.

Transported.  My almost 18 month old might need to be med-evac-ed?

When I picked him up Holt had slumped down in a chair while eating lunch and was crying because he couldn’t get himself back up again.  I was so terrified.  We took him to the local ER and after a while of having to convince the ER doctor that he wasn’t “fine”, we were eventually cleared to drive him ourselves to the neurologist.

The neurologist still thought nothing was seriously wrong, so she sent us home with instructions to increase his dose of ibuprofen and call her the next day.

So we did.

Everything in our hearts wanted him to be better the next day…but he wasn’t.  After a couple days and a few doses of steroids, Holt still wasn’t getting better.  The neurologist put him in the hospital.

10781600734_0c2bc3ab38_b

(Isn’t he just the cutest (: )

After a lot of scary tests (MRIs, CT scans, spinal taps) it was confirmed that Holt had Guillian-Barre Syndrome.  This is a super rare syndrome (like 1:100,000) that is even rarer in kids Holt’s age (18 months at the time).  It causes ascending paralysis (yes..that’s scary) or muscle weakness starting in the feet and going up the body until it possibly affects the respiratory system.  We are lucky that it was caught in Holt early and he was treated with medication.  Doctors aren’t really sure why it happens in some people and not in others (like Holt’s identical twin) but they believe it is caused by an over-reaction of your immune system to a common infection (viral or gastrointestinal) or vaccines.  One’s immune system is attacking a virus, but after the virus is gone, the immune system doesn’t stop fighting.  It attacks the covering around the nerves coming out of the spine.  So a week or so before he started showing symptoms of GBS, he had bronchitis; that’s where they think it started.

20131020_6

He was released from the hospital on August 2 (his half-birthday, for which we all did a dance).  He went from not being able to roll over, sit up on his own, bring his hand to his mouth to feed himself to walking and throwing a ball all in a three day period.

If this had happened just over 20 years ago, the only thing we could have done was wait for it to run its course (which it would have) because there was no medicine to help at the time.

Even though he reacted fantastically to the medicine, about 6 weeks after his first treatment, Holt did start to show symptoms of GBS again.  Because it kept coming back, we were nervous that it might be the chronic version of GBS, CIDP (even rarer than GBS, one’s chances of having CIDP are 1:1,000,000 and even rarer in children Holt’s age).  Extra boosters of the medicine (IVIG) helped with the relapses.

We think we have made it through the worst of all of this.  At his last follow-up, I described to the doctor that he felt like a different person, his old self.  He seemed happier and more spritely and laughed more.  His doctor said it looked to her like he “turned the corner”; like the GBS was really on its way out.

He (and the whole family) recently had a nasty virus.  And the symptoms started to come back.  We can tell because Holt doesn’t want to walk (on his feet) up stairs.  He wants to crawl or be carried.  When he is his best self, he always wants to do it himself.  I took him back to the doctor and she prescribed another treatment of the medicine.  Just like the other times, the medicine works quickly and effectively, thank goodness!  Unfortunately, our doctor can’t really tell us why it’s coming back when it seems like it had gone away.  I believe, even though she hasn’t said this, that Holt is her youngest patient with GBS.  It really does seem like we are all flying by the seat of our pants and no one knows what to expect.  I asked Holt’s doctor at his last appointment about the CIDP and if it was more possible that he has the chronic version and not the acute (GBS) version.  She doesn’t believe that he has CIPD based on his age and how quickly the symptoms came on, BUT she said the great thing was that the medicine works, and works quickly, for Holt.  There are some tests that can be performed on him that might indicate CIPD, but the treatment would be the same.  So, I’m not really sure I want to know either way.  Either way, we treat it the same way.

Holt20130914_20_

an oldie, but a goodie.

I believe in my heart that this will not last his whole life.  Husband and I want to think that he’s so young, and his immune system is still developing, and this crazy thing hit him at such a vulnerable age that it will take him a while to recover completely.  It takes some adults months and  years to recover.  Children are ones that recover quickly and nearly fully.

Thanksgiving20131128_17_

A few weeks ago we thought that this was over, done. We still believe that it is on its way out.  He may need more treatments of IVIG, but it works, quickly. And we are lucky for that. Every time a relapse happens, I’ll catch myself down and sad. It’s so hard not to compare Holt with Win. Win doesn’t have any of these problems. Win can run and jump all the time. Even at Holt’s best, I can still tell a difference, even if no one else can. I start to feel sorry for him and sorry for myself. As soon as that happens, as soon as I start thinking forward (way too forward) about what his life might be like if he had this for the rest of it, I end up taking him to the doctor to be checked out. Going to a pediatric neurologist is scary as a parent. Not only do you have to be there for your child, but you see a lot of other sick kids. Kids that will probably be sick for the rest of their lives. Kids who may not live a “normal” life, or at least the “normal” life that their parents had envisioned. I see the same thing at the pediatric day unit at the children’s hospital where Holt gets his treatment. I see children that are bald, I assume, because of cancer and chemotherapy. I see little babies there, not knowing what their diagnosis is. As soon as I take Holt to these places, I know how lucky we are. Holt is a smart, precocious, walking, talking, happy child. For the most part, he is healthy. He has just had a stumbling block. This blast of reality hits me and I become all sorts of grateful and much more patient with Holt and myself. These visits to the hospital and doctors office adjust my perspective and give me a moment of grace…something I am thankful for.

I have learned to curb my plural speak. And in the end, as the boys get older, it is probably better – better that I treat them as individuals and not as the same person. Treating them as if they were the same was easier, but I know not better. Just like everything else about parenthood, this has taught me that I am not in control. Life will go on its own schedule and I barely will have input. The universe has already thrown us some curves, you know with the whole twin thing (and that turned out pretty ok) that I’m willing to trust that this will be pretty ok, too.

3::52

22 Jan

20140119-200017.jpg

Win and me on a walk

20140119-200232.jpg

Holt: “birds! Where are you?”  {It also looks like he’s missing a finger in this picture, but it’s just the angle}

Kidbits

20 Jan

Win when he’s looking at this picture:

20140119-201204.jpg

That, dear friends, is a picture of the slain Goliath in the toddler bible we have.

“Oooh Noooooo! Ooooooh Noooooo!”
-running over to me with the book to show me the picture with a very sad, worried face-
“Oooooh noooooooo!

Quilts

17 Jan

I have been kind of obsessed with quilts lately. I just love how beautiful and modern they can be. I also love the idea of making something that is beautiful, keeps someone you love warm, and has such an important place in women’s history. I love the idea of women sitting in a circle, talking and silent, pouring hours and love and expertise into this one thing. That is super beautiful to me.

And in the end, the finished product is beautiful and functional. The perfect pair.

I am currently in love with this one by Anna Maria Horner.

20140117-142905.jpg

Apparently I’m loving a lot of things today. Like this boy.

20140117-143316.jpg

2::52

15 Jan

2-52h

This child (Holt) has some of the most beautiful, most serious faces I’ve ever seen.

2-52w_2

Win pointing to where daddy should throw the ball, “freeee!”

1::52

13 Jan

Well…I’m already starting the year off a little behind. The whole family was sick between and after the holidays and I think we’re all having a hard time adjusting to work and school…and life in general.

So that is my excuse for starting my 52 portraits a week late.

And…I might be cheating a bit seeing as I didn’t take any pictures the first week of the year. So these pictures might be from before the new year. I have a feeling you will forgive me.

So here is the first installment of 52 portraits::an image of each of my children, once a week, for 52 weeks.

1--52a_

1-52b

Holt watching some mind-numbing tv after waking up too early from a nap.

Win jumping in front of the camera while I was taking a picture of Holt.  He’s been very interested in the camera and always wants to look at the back of all the pictures.

I want to make

8 Jan

one of these!

family-tree-quilt-707x1024

 

Isn’t it just beautiful?  Click on over to A Girl and a Glue Gun to see how she did it.  What a wonderful gift!

Hunger Strike

4 Jan

My kids are staging a hunger strike. Their demands are simple: they get to watch Barney or Mickey Mouse Clubhouse all day long. And, in return, they will eat a minimum of one meal per day, standing – not sitting – at their table, get their daily value of calories and protein from milk alone, and steal food off my plate at other opportune moments during the day. They will consider eating a yogurt pouch – in the car…if I’m lucky.

I know the first rule of life is to never negotiate with toddlers or terrorists, so I’m not going to do that. I’m writing those terrorists toddlers a strongly worded letter.

Dear children:

I know that you’ve been able to watch a lot tv the past few days. Mommy and daddy have been sick. Both of you have been sick. There was nothing we wanted to do less than to actually get up and attempt to entice you to play with a toy…any toy. Even Mickey Mouse. Or a ball. So we, mommy and daddy, have bent to every request to watch Barney (or the French pronunciation, Barnier, which you have been throwing out recently. I knew our boys were smart when at a mere 23 months they could sense that using the French pronunciation of a word makes them sound smart, a little sophisticated, and a wee bit snarky). We have been more than happy to acquiesce to your demands of switching from Barnier to, what Husband calls high theater compared to Barnier, Mickey Mouse Clubhouse. In fact, we were much happier to change the channel from the purple dinosaur and his singing munchkin friends to ANYTHING else.

But now, boys, now…daddy is almost better. Mommy is on her way to good health. And you….you two. I can tell by your running and screaming around the house, by you playing with toys again, by you pulling the dining room chairs into the kitchen to play with all our vitamin bottles, by your general good mood, that no one NEEDS to watch Barnier all day long…no matter how much you point at the tv and whine and beg for more Barnier with the most pitiful voice I’ve ever heard.

20140104-212232.jpg

So, hear me now…we will go back to watching tv on a limited basis so mommy and daddy can use it as tool; so we can have a few minutes to do something that will go much easier and quicker while you watch tv and are not chasing our heels. Watching Barneir all day, and listening to Riff, his dinosaur friend, and his super fantastic singing voice (please find the sarcasm in that) doesn’t allow mommy and daddy to use tv as what it is meant to be: a free babysitter an educational tool. Too much tv and it loses its effectiveness.

Finally, you are also going to start eating real food at your table again. None of this eating a random piece of bread while watching the purple dinosaur who will remain nameless from now on. I know no one has really been enjoying food recently because we can’t smell or taste anything. But that time is coming to a close. And you will eat. And you will eat something other than Meetmow (oatmeal) or hot dogs.

We are your parents, and we love you to the depths of the ocean and back. But we are also the adults…and we will win.

Love,
Mom and Dad

20140104-211858.jpg

52 portraits

1 Jan

I’ve been reading about the photo 365 project.  It’s the one where you take a picture everyday and do something with it and at the end of the year you have a picture from every day of the year.

It sounds so wonderful…but completely unrealistic to me.  I just can’t see myself really keeping up with it EVERY DAY.

But I recently found Bleubird Blog’s The 52 Project.

I love this idea.  Take a picture (or portrait if you’d like to call it that) of each of your kids once a week for a year.  I can see so many things I could do with this. I could take them all in instagram and make a flipagram.  I could make a real flip book from Artifact Uprising.  They have really nice craft and papers and a nicely-sized square book for instagram photos.  I could make a larger print book or a gif! Maybe it’s a poster with all 52 pictures.

And once a week seems so much easier than every day.

I’ve seen a lot of people in the blogosphere talking about “goals” instead of “resolutions”.  I’m not really sure I know the difference.  But New Year’s has always been a time for me, and I’m sure for many, to reflect about last year, and the past in general, and look to next year.  Whether it be a goal or something I resolve to do…I would like to do this.

Take one picture of each of my kids once a week every week this year. I’m excited to see the every day mixed in with the special times…all in one place.

Thanksgiving20131128_51__
Thanksgiving20131128_54__