Randomness, Bullet Points, and Very Important Information

  • Look! It is another post filled with random information and gifs! I’m so original.

  • Over the weekend my husband took our sectional apart then put it back together reversed and rotated. Or something. It is kind of difficult to explain, but the end result is a similarly shaped sectional facing a different direction. Yay for modular furniture! He took on this task to make room for the little man’s recliner. Somehow, even though we added an additional piece of furniture, the room feels larger. It is also about 200% cozier. I am confused by this furniture illusion.

  • It is cool outside and I’m loving it. [Did you say that to the McDonald’s tune? That’s how I typed it.] We’ve also had several drizzly, nasty, overcast, rainy days in a row. I’m loving that too.
    Addams Family Rain

  • On Sunday, I reheated some chicken in the oven. It took a total of twelve minutes. I burned myself.

  • The daughter got braces last Thursday. Her two front teeth already look different. The orthodontist said those particular teeth would move fast, but I didn’t think he meant in a matter of days. Speaking of braces, I’m really ticked off about the price. Unless you are correcting something major, insurance covers next to nothing. But we live in a society where straight teeth are expected. Braces are no longer a luxury product, but they are still priced like one. Just consider the huge number of adults getting braces and products like Invisalign today – we’ve lived through a big teeth change, people! Oh well, nothing to do but make my monthly payments and complain.

  • I am counting down the days until I can put up Christmas decorations. I may have already listened to holiday music . . . multiple times.

  • I tried to make a funny blog post about things I irrationally hate and things I love (in theory). Unfortunately, I am a cranky bitch so my hate list kept growing while the love list was stuck at two. Want some examples from the irrationally hate list? Red colored mulch, long instrumental breaks in songs, people who name their cars, pink colored weapons, iPhones. At one point ranch dressing was on the list, but I decided that one was completely rational and scratched it off.

  • I may have recently said “because I’m adorable” in a serious professional conversation. I’m not sure whether to be embarrassed by this gaffe, amused at my humor, or amazed by my audacity. I’ve decided just to try and ignore it unless it comes back to haunt me.

  • Sometimes I have to say “I need you to stop talking” just to get a word in edgewise with my daughter. She is too extroverted for me.

  • People keep asking me if we’ve figured out what we are going to do with the little man this summer. The short answer is. . . No. The long answer is. . . No and we don’t really have any good options. There just isn’t care out there for someone as disabled as the little man. At least, not that I’ve found yet. So far, I have two options on my list: 1) Hire a nanny (can’t afford that) or 2) One of us quit our job (can’t afford that either). It is kind of terrifying.

The First Nine Weeks

Okay, let’s talk about Kindergarten.

The little man has officially been a kindergartner for nine weeks now and – overall – it is going well. He has no problem waking up a little bit earlier to catch the bus. In fact, he really likes the bus driver and is usually excited when it pulls up outside the house. If I’m not in the living room when it arrives, he gives a little yell (usually “hey”) to let me know it is time to go. Then as they raise him up in the wheelchair lift he waves goodbye, just smiling and happy. We like the bus driver too; he has been driving the special needs bus for several years and is great with the kids.

Of course there have been some days he hasn’t been thrilled to head off to school, but the little man is pretty agreeable and typically gets over it pretty fast. Although occasionally he will tell me “no” when I try to put his uniform on. Sometimes that is a game – he wants me to be taken aback by his audacity – other times he means it.

He still isn’t completely sure of the routine. Every day when I carry him down the hallway to the living room he asks where his dad is. I’m assuming he just isn’t sure if it is a school day and dad has already left for work or if it is the weekend and dad is relaxing on the couch. It doesn’t bother him when I tell him dad is at work, so it’s all good.

I’m pleased with his teacher. She is absolutely still trying to figure our little man out, but is committed to finding out what works best for him. This is really all you can ask for. I mean, there is a huge learning curve with a disabled child and every single one of the kids in that class is different. I love the fact that she is supportive of our desire to get him spending some time with the typical kids. The little man has always learned better from other children and I wanted to make sure he was able to spend some time outside of the special needs class. His teacher was happy to give it a try and it worked out so well we are adjusting the IEP to add more time with regular kindergarten classes. This is during things like art and music, not standard teaching time.

He got a good report at the first parent-teacher conference. I was very happy that one of the first things his teacher said to me in that meeting was that she understood what I meant when I was explaining to her that there is a lot more going on in this head than he can communicate. The little man is profoundly disabled, but had a lot of potential mentally if we can just figure out how to get it out. I try to let everyone we work with know this, but it can be hard to get the point across – hard to make it seem like I’m not just an overly-optimistic, partially-deluded parent.

He is struggling with being comfortable around the kids, although I’m sure this will only approve. The little man is used to be the “most-disabled” in his classrooms. Being around other children in wheelchairs and children awkwardly (and adorably) traipsing around in their braces must be a bit of a shock. We are working on getting him a new chair in the classroom as he doesn’t like being in the current option that much. If he feels a little more secure when he is out of his wheelchair, I think he will feel more comfortable with the other kids. It isn’t a social problem, that’s for sure; the little man is a social butterfly.

I don’t feel like his therapy is up to the level it was at his preschool, but these are brand new (to him) therapists still learning about his skill level and possibilities. I’m not worried about this working itself out as they get into a groove with him.

From my point of view, I’ve been surprised by how much of a shock kindergarten has been for me. There is no ignoring the fact that my son is on a different educational track than the other kids in the school. He recently had a field trip where a small group from his class went to a local community market to learn about fruits and vegetables. I was conflicted – on one hand, I know the little man loved it and I’m glad he is getting to go out and about; on the other hand, I’m sad that my son’s education is going to be so based in learning navigate his world in a very rudimentary way. I’ve also discovered a new found fear of other kids (and adults, let’s be real here) making fun of him and his classmates when they are on field trips. These are my fears though, not his.

Young Folks [A Repost]

I wrote and posted this last year, but it has been popping up a lot in my mind in the last few weeks. I wanted to share it again. I’m talking about young parents, but the takeaway applies to many situations – Don’t let people hold you to a higher standard than they hold themselves.

Recently, I had a conversation with an old acquaintance that really irritated me. A little background – I got pregnant with our daughter during my first year of college and had her when I was 19. I won’t quote the acquaintance directly, as she didn’t mean any harm, but she said something that translates to, “Wow, I can’t believe your life isn’t all screwed up.” I’m a bitch, so my response of choice would have been “I’m sorry, how many master’s degrees do you have exactly?” But I’m also nice, so in reality I just smiled.

Now, this is something that I used to hear fairly often – people not being able to believe that I stayed in college, that I finished on time, that I worked, that I’m still married, that I went to graduate school, etc. [Although I don’t hear it as much anymore b/c most people aren’t aware of my early “indiscretions” and the rest just don’t care b/c I’m a grown-ass woman.]

Why does society expect a 19 year-old to choose between her child and her dreams? We don’t require that of a 29 year-old or a 39 year-old? Why was I expected to fail? Society spends a great deal of time trying to stop young women from having abortions, but then pretty much the same amount of time trying convincing them that their life is over if they have the child. “You had the sex! Suffer the consequences!” Well gee, those are crappy choices.

This is not what we should be telling young parents.

A good hard dose of reality with a little encouragement would go a long way. It’s not difficult. Here look, I’ll go first:

“Congratulations! This is going to be really hard, but the payoff will be better than anything. For the next few years while your peers are able to save money, travel, and explore exciting career opportunities, you will be coming home to a very demanding tiny human and spending every spare dime on formula (because naturally the only breastfeeding advice you will get in the hospital is “Well, you are just going to have to figure it out, honey”). [Speaking of hospitals, a lot of nurses will assume any problem you mention is just the whining of a stupid kid. Make them take you seriously – you deserve the same care as the mother down the hall.] It may make you feel bad to see your friends’ shiny new cars as you load your baby in her hand-me-down carrier into your bargain transportation, but try to shake it off. It will all start to even out a bit in the end. Try to avoid going into debt. God knows those student loan payouts are tempting, but you will only put yourself further behind your peers as you spend years paying it off (trust me, I know). You are going to need a support system – family, friends, etc. This is beyond important. And – listen, this is the big one – you are important. You don’t have to lose your identity just to have a kid. That 30 year-old mother over there allows herself a night off without judgment (well, with reason. The judgment from other mothers is outstandingly harsh.); you can do the same. Really, you can. Sure, some people might use that as ammo to criticize what a bad parent you are . . . but who cares? Don’t let them hold you to a higher standard than they hold themselves. You rock. Your path might be different, but you will find it. And get to enjoy your little one along the way.”

See. Not hard.

To Charter School, Or Not To Charter School

This isn’t a regular topic for PlayfullyTacky.com, but I really wanted to talk about charter schools today. A little background so you can know where I’m coming from: my daughter attended public elementary school from K-2, until we moved her to a public charter school after problems with the local administration. She just started 7th grade at that charter. The little man just started Kindergarten at a public elementary school, although not the one the daughter was pulled out of.

I haven’t really processed all of my thoughts about this topic. Expect this post to be a bit rambling and unfinished – I’m still working it out. Plus, I intend to just draft this out and set it to post in the morning (I’m writing at 9pm, Sunday). I don’t feel like my words will ever feel polished enough for me and I’m just going to toss them out there anyway.

There is a bit of a never-ending debate around charter schools. The data out there about the effectiveness of the schools is murky at best and – with a bit of spin – can fit any number of arguments. I’d say it is complicated, but neither side of the issue would agree with me. The major problems associated with charter schools are very troubling – 1) They take money away from the public schools; 2) They often strip away the best performing children from public school, leading toward higher ratings the public can’t compete with; 3) They are often a way for families to leave schools with a large minority or low income populations; 4) They aren’t bound by the same rules and regulations as their public school counterparts. The issues become more complex when you dig into individual locations. In my state for example, the argument includes a troubled history with public education, current problems in two large districts, and a conservative push for privatization of schools by a famous family foundation.

In theory, my political beliefs say I shouldn’t be a supporter of charter schools and I certainly shouldn’t be sending my daughter to one. It is actually a bit of a personal conflict for me. I’m a firm believer in trying to fix problems in our institutions instead of fleeing for greener pastures. I feel very strongly that it is our duty to work for the improvements together. Any doubts I had about this theory vanished after spending time with American citizens of Japanese descent who were incarcerated in camps during World War II. I’m constantly inspired by their ability to forgive and their commitment to bringing about positive change. The public school system is one of the building blocks of our nation and a place we should all be supporting (financially, physically, emotionally, and lots of other -allys you can think of). I know a lot of people don’t agree with me on this and that’s okay, but you’ll never convince me that simply paying your taxes is enough interest in your local schools.

So, when I came face-to-face with our school problems I was surprised to find my instinct to flee coming up so strong . . . and eventually winning out. I found it very hard to reconcile my personal beliefs with my need to provide the best educational opportunities for my daughter. I suppose part of what made walking-away easier for me was the fact that it wasn’t a “big” issue. I know we weren’t the only ones upset with the actions of our principal and some other high-level staff, but we weren’t dealing with discrimination or something similar. I justified pulling her out with simple questions – “Is it worth the struggle to get a simple slap on the wrist and a ‘we’ll try harder’? Do I want my daughters education to feel like a battle for such a small payoff?”

I still question my decision. Were the problems a one-off or something systematic that needed investigation? What happens if all of the involved parents leave? I don’t think this happened in this situation, but I worry about the precedent. Did I send the wrong message to my daughter? All good questions.

Monday was a Real Bitch.

We spent six hours in our local children’s hospital on Monday for regular check-up appointments. We got less-than-stellar news at the last appointment. Then we got really horrible extended-family news on the way home, although I won’t be sharing that today.

8:15am: Parking is spectacular, as none of the other handicapped vehicles have early appointments . . . apparently.

8:30am: First appointment time with the rehabilitation doc. Sitting in the waiting room – this neuroscience center is our most-visited location of the hospital. We got this.

8:40am: Called back to do all of the weighing and checking with the nurse. This was our first time taking the little man to an appointment in his wheelchair (instead of the stroller), so she weighed it for us to. Once they know how much the empty wheelchair weighs, we can just push him up onto the big scale and do a little subtraction for the final number.

8:45am: In the room. We are clearly the first appointment of the day and I think that means we will be in and out quickly [ha! I’m naïve]. We start planning a visit to a local brunch spot in-between appointments.

8:45am8:55am: The clock is broken.

9:10am: First up, the resident. She is nice and seems to be further along than some people we usually end up with – most of her questions make sense and she isn’t thrown off if we don’t know the answer to something.

9:20-9:45am: Wait. Wait. Wait. Wait.

9:45am: The doctor! The appointment is pretty short, but we expected that. He is pretty much up-to-date on all of his equipment and doesn’t need any therapy changes, so we just get a prescription for new leg braces and discuss raising the dose of his muscle relaxer (that ends up tabled for the moment, as we meet with our neurologist in a couple of weeks).

10:10-10:45am: Ugh, it is later than expected and really hot outside. We decide to brunch in the hospital cafeteria. Eat. Eat. Sit. Eat.

11:00am: We head downstairs to get the little man fitted for his new braces. Last time we made the mistake of having them done through this school. We loved the style of the braces and shoes a whole lot better and it was definitely easier than visiting the hospital, but the braces fell apart too quickly. We won’t make that mistake twice! If you have never been cast for braces, it is a very simple process and only takes about fifteen minutes.

The little man's first AFOs, 2011.
The little man’s first AFOs, 2011.

11:45am: After wandering around for a while, we go ahead and check in at our next appointment with the orthopedic department. The appointment is scheduled for 12:30, but he will need x-rays first, so it doesn’t hurt to arrive early. The hospital is in the middle of a remodel and this is our first time in the new orthopedic waiting room – very nice!

I lost track of the time spent in this waiting room. At some point, we had three x-rays taken. That went well, mainly because the little man doesn’t have to be put in the horrible baby-tube anymore.

A baby in a Pigg-O-Stat - amazingly not screaming like very other child I've seen in one. This baby became a meme, so I don't know where the original came from.
A baby in a Pigg-O-Stat – amazingly not screaming like every other child I’ve seen in one.
This baby became a meme, so I don’t know where it originally came from.

12:45pm: We are called back, finally!. . . . But wait! It is just to see the nurse and sit in a sub-waiting room. BLARGH! I can’t complain too much though, at this point we are only fifteen minutes past appointment time.

1:00pm: Okay, finally in the actual room. Let’s get this show moving.

1:15pm: ::sigh::

1:20pm: The nurse pops in again to do the initial questions. Yay! She says they will be back in a few minutes. She is lying.

1:50pm: I’m losing the will to live.

2:00pm: Doctor! The little man is tired and really isn’t handling being stretched all over the place very well. Unfortunately, the x-ray shows that his left hip has gotten worse despite our work with Botox in the groin and targeted therapy. We will watch it for a few more months, but if it continues down this path (very likely) we will need to discuss surgery to cut and re-position the bone.

2:15pm: After six hours, we leave deflated.

3:00pm: Distressing family news. We all take a nap.

I’d like end on a high note with a funny graphic about having a “case of the Mondays” here, but it is inappropriate. Perhaps I can update with better news before this posts.

The One Where I Call Bullshit

You know, if you read a lot of blogs written by parents with special needs children you start to see posts that say things like “No, I don’t wish my child was ‘normal,’ because then he wouldn’t be the same” or “If I had the power, I still wouldn’t change things. I love my kid how she is.”

office space

I call bullshit. Not on the fact that these parents don’t love their children no matter what, but on the fact that they wouldn’t change things if they had the power. I love the little man. I love his sweet nature and his contagious smile. But I would give anything to take this disability away and give him the chance to live an easier life. Even if it means he turns out to be an asshole.

It is all just silliness, of course. None of us have the power to change these kinds of things. But still. Those kinds of statements just rub me the wrong way. Sort of a, “See! I love my child so much! So much that I would keep everything this way! Our family is so accepting and loving! I can’t believe you want to change your kid.” Now, I know the parents saying these things don’t think that way. They are all – in general – lovely people and I get the sentiment they are going for. But I think it sets a bad precedent. I think it would do more good for special needs parents everywhere to admit that we would love for our children to be able to live a “normal” life and, in turn, create an atmosphere where we can all admit our secret wishes.

A good healthy dose of honesty. I am a real parent, not someone who had achieved a higher state of being through my personal challenges. I dislike sickness and whining just as much as you do. I’d love to get a few minutes alone too. I can’t always balance on the pedestal some people want to put me on. [I’m not trying to brag here, just pointing out a common reaction to “my kind” of parent that I’ve experienced.] But I’m still a pretty good parent. So are you, probably.

You aren’t a bad parent if you wish your child had it easier. You aren’t a bad parent if you are tired of changing diapers way past diaper-changing age (we are on year five now and it sucks – I think I’ve said this before.). You aren’t a bad parent if you wish that you could, just once, leave the house without having to plan your day around handicapped access.

It is okay to admit that you hate a lot of things you have to do every day. It is okay to admit that things would be easier – for your kid and for you – if things were different.

Wishing that things could be different doesn’t mean you love your child any less. It just means that you know what challenges they face and wish you could help more. Isn’t that what we want to do for all our children?

Tween Parenting 101

This is what you are trying to avoid.
This is what you are trying to avoid.

My daughter is twelve and will soon leave the tween stage behind (although I’d argue that thirteen fits more as “tween” than “teen”). I’ve already written about parenting a tween once, but will revisit the topic and go into a little more depth today.

For some reason, parents (moms, especially) appear to be more terrified of the tween stage than the teen stage. On one hand, I get it; this is the first time when you look at your little kid and see glimpses of a walking-talking-adult. One day you kid is playing with toys and the next they are putting on makeup, complaining about their clothes, or spending way too much time in front of the mirror in the morning. Then they go right back to the toys.

On the other hand, I’m not going to pretend that the teen stage isn’t the scarier of the two. I mean . . . come on, I was teen once. I know what happens.

Parents who think the tween stage is worse probably mean it is worse for them. You lose your baby. You probably start to spend less time together, stop playing silly games, and end up regulated to walk behind your kid and her friends at the mall. You adjust to it and find new ways of bonding or spending time together, but tween is decidedly the end of your baby. The teen stage on the other hand, is worse for the kid. Sure, they might hate you in that annoying adolescent way. They might rebel and you might struggle to find the right path. But overall, they are the ones in the hot seat here. This is when stuff really matters and when what happens can have a drastic effect on their future, good or bad.

So let’s get to it.

Managing expectations
I touched on this in my last post, but it is worth mentioning again (and – I would argue – a very important part of parenting in general). Your sweet angel probably isn’t going to want to wear that Disney dress or themed smocked overalls. Get over it. You probably wouldn’t want to wear it either – you’ll notice they don’t really have a lot of that in adult sizes.

Think about what you really want from your relationship with your kids and what you want to provide them. If you get hung up on trying to postpone adolescence or to create a mini-me, you might miss your chance to plant those seeds.

Finding new connections
Okay, so you can’t [insert stereotypically parent/kid activity here] anymore. So what? Find something else you can relate to in your kid’s growing interests or search for something new the two of you can appreciate together. My husband easily connected with our daughter over computer games and their tween relationship is all the better for it. It might not seem like much, but approaching your child in this new “mature” way is a great transition of your relationship. Even something as simple reading a new book series, shopping for shoes, cooking, or decorating a bedroom can reopen communication with a reluctant tween. It takes it from a basic “mom is playing with me” to “mom and I love to do this together.”

Loosening the reins
Now is the time to start letting you child take control of some things. Give them responsibility for more than taking the trash out and keeping their room clean. I’m talking bigger decisions here – keeping up with homework on their own, planning outings and projects on their own, maybe buying some of their own things if you have a good allowance system (we do not). If you don’t start doing this incrementally now, you will end up with a teenager you don’t trust to handle life responsibly and will release a woefully unprepared adult out into the world.

Setting boundaries
Yes, we all know about setting boundaries for our kids – and that still applies here – but I’m talking about boundaries for you. Say you are loosening the reins by letting your child take an active role in her purchases. This is great; you get to teach her money management and prioritization. But don’t get too mixed up and let her into adult conversations about financial issues or stress. See, you jumped over a boundary there. That is just an example, but you can imagine how this might apply to many situations. She might be getting older, but your kid is not your friend. She still needs to be parented even if she is thriving with her newfound responsibly.

Taking time to teach
In my opinion, the tween stage is a great time to teach your kids how to deal with their emotions. They are just now starting to deal with a whole bunch of hormones and mood swings, but they still enjoy talking with you and won’t just shut you down like a sullen teen might. Use that to your advantage! Model good stress relief techniques, anger management, and appropriate emotional response. If you are lucky, some of this will stick when their minds become invaded by little teenage hormone bugs. My kid has a temper, so we work on counting-to-ten type of techniques now when consequences are very low. It will pay off in the end.

And remember: Your kid is crazy. So is mine.
Sometimes they are downright mean, but everybody goes through it and have for years.
You’ll survive.

10 Ways Tweens Are Like Gremlins = next post?
Maybe my next post should be “10 Ways Tweens Are Like Gremlins.”

Adventures in the System

A little background for new readers since I haven’t written about this in a while: Our five-year-old son is disabled; he has cerebral palsy. We deal with “the system” a lot to get him all the services he qualifies for. Also, as part of our adoption agreement, he has been allowed to stay on Medicaid regardless of our income. That brings another layer of red-tape challenges. I’m not thrilled with the system, but also recognize the many hurdles its employees must deal with. I try to be understanding; sometimes it is hard.

So, now on to today’s gripe session.

Last Thursday, we got a notice in our mail box informing us of a certified letter from our local DHS waiting at the post office. Due to work schedules, the holiday, and a flu-like sickness invading the household, we weren’t able to retrieve the special letter until Tuesday.

It turns out the letter was sent to notify us that DHS, unable to reach us by phone, would be declaring our account inactive if we did not respond by 8/8/14. Yes, 8/8/14; they couldn’t even take the time to update the form letter. Having not received a call from DHS is many months [typical], we were fairly perplexed and got in touch asap.

The assistant we spoke to assured us that the caseworker likely just had some incorrect contact information and we could easily get it straightened out. I would totally believe this. Except – we have not moved since adopting the little man, they have three separate phone numbers for us (home and two mobile, maybe work too), and they clearly knew our address. Would it have killed them to send a letter prior to threatening to deactivate our case? Seriously. Take one extra minute to try and help the people you are supposed to be helping.

Here are a few things I think are far more likely – 1) they never called at all; 2) they only called once, but didn’t leave a message; 3) the caseworker called an incorrect phone number, but never bothered to check our paperwork to see if it was correct or other ways to reach us.

Number 3 really stands out as the winner considering everything I have learned during our five years in the system. We have Vonage, so phone calls to our home actually show up on my husband’s cell. We haven’t seen anything recently from DHS, but I suppose it is possible they don’t show up in caller id as a government agency. Or they show up as something strange, like Hewlett Packard.*

This all reminds me very much of the time we had a home study scheduled and the lady coming to do it didn’t realize we were in another county until 15 minutes prior. Like, she didn’t even pay attention to the address until she had to get directions. Even if we had lived in her same town, she would have been late to the meeting. Instead, we were on our way home early for something that wasn’t even going to happen. Then we had to start all over because our paperwork had been in the wrong county the entire time.

Look, I’ve seen the inside of the system. I know that so many of our government workers are underpaid and overworked. I know that many of them started out as hopeful people only to become jaded over the years at a system they can’t change and families they can’t help. Or even worse, families that don’t want to be helped. I know they have watched children suffer because of government inaction while other suffer because of government overreach. I get it. But it is hard to remain understanding when parents on my end have to struggle so much just to get anything done.

*Somewhere along the line our state DHS acquired a ton of old Hewlett Packard envelopes. More power to them; I’m happy to see a state agency trying to save money. They don’t even bother to put a sticker over the HP information though. Every so often, I get a letter that appears to be from HP reminding me of the well child visits my son is eligible for. Now, the stuff that comes in these envelopes isn’t usually important – more informational stuff trying to remind parents who might not otherwise be inclined to take advantage of their services – but once it was something important that I needed to follow-up on. Who knows how many I tossed before realizing it wasn’t HP junk mail.

To pump or not to pump? Baclofen is the question.

No, this post is not about breastfeeding. This isn’t that kind of blog.

The little man had a consult with a neurosurgeon last week about the possibility of implanting a Baclofen pump. I am wholly confused and undecided about this.

First, what is a Baclofen pump? Baclofen is the muscle relaxer the little man takes everyday to help with his spasticity. He takes it three times a day and it has to be refrigerated – not exactly the most-friendly medicine. If he doesn’t get his Baclofen, his limbs are tighter and he has more difficultly maneuvering, especially with his hands. A Baclofen pump is implanted into the abdomen and delivers the medicine straight into the spine in an area called the intrathecal space. Taking the medicine this way eliminates the regular muscle relaxer side effects, can possibly make the dose smaller, and, hopefully, makes the medicine more effective.

There are a lot of positives that can come with the pump. Aside from the possibility of greater muscle benefit for the little man, it would mean no longer being tied to a three-times-daily medicine and no longer having to plan days around doses or pack an appropriate insulated lunchbox. The little man’s last daily medicine would only have to be dealt with every few months when the pump is refilled (through a port). The hope is that the pump would greatly improve his muscle spasms. Since the spasms are a huge reason he is unable to sleep through a night, the pump could mean we finally get to have a normal sleeping situation. That would make a huge difference to all whole family.

There are also a lot of negatives. Since the medicine is being delivered straight to the spine, overdose is common as the new – typically lower – dose is being settled on. This would happen in the hospital, of course, but it is still a concern. Then there is just putting the little man through another surgery. Doing the test for the pump alone was horrible for our family; the little man had a spinal headache for a week after and it was unlike anything I had ever experienced. I dread willingly subjecting him to that possibility again. The pump only lasts for five years or so and will have to be replaced (just the pump though, not the catheter into the spine). Do I want to sign my son up for a lifetime of surgeries?

And of course, there is the unknown. The little man is tall and thin; will there be enough room for the pump? If we wait will he just get taller and thinner leaving even less room? What will his recovery period be like? Three weeks until normal activity for a five year old is pretty daunting.

The little man’s neurologist, his physical therapist at the hospital, and the neurosurgeon all think he is a good candidate. I must add, the neurosurgeon was wonderful. She answered all of our questions and didn’t pressure us to make any decisions during our consultation. But at this point, we just don’t know anyone who has first-hand experience with the pump.

Our next move is to meet with his physical and occupational therapists at school – the regular ladies who see him three times a week – and get their detailed opinions and information on any experiences they have had with the pump. I’ll be scouring the internet for opinions, of course, but most of the stuff I found in my initial looking several months ago had to do with older people. I really want to find some people talking about the pump in young children. After that, we’ll talk with his regular pediatrician and his doctor at the hospital’s medical home clinic. Both are tell-it-like-it-is doctors with excellent bedside manner.

Anyone out there have experience with the pump – good or bad? I’d love to hear your story.

Random Thoughts About Family

You should know by now that I’m not a “pinterest mom.” In our house, we are messy, unorganized, loud, terrors with hot glue guns, and live completely without monograms. We eat non-photographable dinners and rarely do anything Instagram-worthy. Our socks rarely match and we spend too much time on the couch. Still, from far distances I am most-obviously a “mom.” It may surprise you to discover this was not a place I ever pictured myself being.

When I was younger I wasn’t sure if I wanted to have children. It seemed like something I would probably just do one day, but when I imagined my future life children were not in the fantasy. A husband sometimes, but no kids. Looking back now, I realize my love of travel was actually an unacknowledged desire to avoid settling anywhere (something that still causes tension in my marriage today – sorry husband!). In fact, I never really gave family much thought until the pregnancy test came back positive.

Considering where I am now, I’m not sure I would have ever made the conscious decision to have kids. [Can you have two kids and still not be sure you want kids?] Don’t get me wrong, we did make the very deliberate decision to grow our family and adopt the little man (and might even do it again someday), but if the daughter hadn’t come along unexpectedly, I’m not sure I’d be the suburban mom.

Adjustment period aside, when the daughter was born I was perfectly happy being the mother of an only. There is a certain age where your “first child” becomes your “only child.” I’m not quite sure where that line is, but I’m sure we crossed it with the daughter. I grew up only and took away a lot of good things from the experience, so more kids were never an assumption for me. In fact, I didn’t make up my mind about having another child until watching my mother and her siblings after the death of my grandfather.

When the little man came along the daughter was seven. I was surprised how much more child-focused our life was after becoming a family of four. For some reason, the adult activities we always included the daughter in no longer made sense with two kids. An interesting phenomenon – I wonder if other people have experienced the same? Or maybe we were just too lazy to continue the same kind of activities with two kids in tow? Truth be told, I kind of miss our only-child household; it was easier to be something more than “just mom and dad” then.

On the other hand, being a family of four is pretty awesome. Is it possible to be feeling all of the different things about kids at one time? I’m not sure if I ever wanted them. I miss only having one. I love having two. I might want more. See, all the things.