Stuck

It's been about 10 years now since the two halves of Levity and Perspective joined forces
and I thought it would be fun to share what I consider an important moment in our relationship.
Before I shed some light on this particular moment, a little background information.

One of the fun things about having a kid with Down Syndrome is that the diagnosis comes
with a host of other medical issues. One complication that Maggie had dealt with was frequent
choking. Due to this, my wife, myself, and Maggie's older sister have gained more than a
passing familiarity with the Heimlich maneuver. After several doctor appointments, 911 calls,
and more than a few PTSD inducing choking events, it was decided that in order to counter this
issue Maggie would need vascular ring surgery to reroute her esophagus.


Maggie had already had several hospitalizations due to chronic aspiration pneumonia, a mitral valve repair, an AV canal repair as well as a diaphragmatic hernia. When I say several hospitalizations I don't mean like a couple of dozen. For the first few years of her life she was in the hospital nearly as often as not. I learned all of this second hand as I was not yet in the picture. This surgery would be my first venture in to the wonderful realm of inpatient care.

At this point we had been together for several months and were in love. It was wonderful, but I had been in love before. I did not know yet that this was going to be the big one. I remember the moment that I came to this realization.

Maggie was having her central line dressing changed. This was located in her neck and as far as I understand, was a line that fed directly into her aorta. Probably a fairly routine procedure when done on a willing patient. Due to Maggie's inability to understand what was going on, she would not be a willing participant. Imagine trying to thread a needle, but you are performing said needle threading on horseback at a gallop, also if you miss the eye of the needle your needle can bleed to death. Nurses really are amazing.

I myself had no idea what was about to unfold but began to gain the smallest bit of understanding as my wife prepped the nurses. I remember the phrases, "Don't underestimate her strength" and "we'll need more people" being repeated several times. Part of me thought that five adults to restrain a 9 year old child seemed excessive. But the confidence with which the woman that would eventually become my bride spoke caused me to believe that we may be short handed.

Don't worry she made it. We had her raking leaves within the hour.

What transpired next would forever redefine the words love, trust, and strength to me.

As the nurses held Maggie down and performed their duties, my better half held our daughter's face and reassured her. Maggie did not understand the procedure but she knew that it hurt and she was afraid. She fought with every ounce her little body could muster. The nurses were nearly outmatched. They performed admirably.

I have never felt more useless. As the nurses and Maggie and a woman that I'd only known for a few month's struggled, a shameful thought occurred to me.

I could just leave.

Everyone was distracted and I could be halfway to the parking lot before anyone even noticed I was gone. This was too much, WAY too much for me too deal with. I wasn’t ready for this.
Up to this point in my life I'd never dealt with anything this scary or intense. I'd had relationships aplenty, but I'd also done a pretty solid job of avoiding anything that smacked of any REAL responsibility or sacrifice. This blatant display of love, bravery, trust, and raw emotion was a lot to process.

She told Maggie it was all going to be OK. She told Maggie that it was almost over. She told Maggie that she was safe. She told Maggie that she knew that it hurt and she was sorry.
Maggie believed her, Maggie trusted her. This was a situation that the woman that I was in love with had been in several times and she kept doing it; she did it over and over and over again. She would face this every day for the rest of her life if necessary. I had never seen such strength. I never would again.

All thoughts of flight disappeared. Cowardice was replaced with a steely determination to stay as close as possible this woman for the rest of my life. I was stuck. Not stuck in a bad way; like in a cage with 5 rabid koalas. Stuck in a good way, like on a couch with 3 happy sloths and a new season of (whatever you're into).

On my best days I feel like I stand in the shadow of her courage. I'll never not be impressed with her. She is the most amazing person that I’ve ever known and in knowing her, I am becoming a better me. I’m not proud of the me that she initially fell in love with nigh a decade ago. The me that saw a scared Maggie and wanted to flee; but I’m getting pretty happy with the dude that has been created, in no small part, by her love.

She is way out of my league, I hope she never figures that out.

Cheers

L&P

Enter the Doggone

About a month ago we were presented with an offer that we felt that we could not refuse.
One of the Levity and Perspective mom's were informed of a Goldendoodle that was in need of a new home. Her name was Ruthie and she belonged to a loving family. Unfortunately due to circumstances beyond the families control they couldn't spend enough time with the dog and felt that she would be happier in a home where she would receive more attention. They were seeking a nice family that would be willing to take Ruth in and provide a loving and supportive environment.

Since a nice family could not be located, we volunteered our services.

Her name has remained mostly the same since we took her in though Merritt added a second name. So I now present Ruthie Anna.

Hi

The nick names that she has received thus far are Ruth Bader Dogsberg, Baby Ruth, Doggo, Ruthersford B Hayes, and Ruby. She is also called each of the childrens' names when we are particularly flustered.

Now, being that my wife and I are both in our 40s, have multiple college degrees and professional licenses between us, have a child entering her Junior year of college, and have had less than 4 severe head injuries occur in our household over the past couple of years, one might assume that we are competent enough to make this decision on our own. One might think that others would grant us the basic respect that we had thought through whether or not we should add another happy face (dog or otherwise) to our home. One might imagine we had weighed the pros and cons and carefully plotted out our family budget and arrived at outcome that this would be a positive for our family.

Strangely this was not the case.

Now we may be a bit sensitive on the topic because many of our decisions such as, having a kid with special needs, having a third kid, having twins, adopting cats (by the way we have two cats too),  and our LA Guns cover band, have been met with similar skepticism and dour attitudes.

It should be noted that the only of the aforementioned choices that we have come to regret is the one that I just made up.

Some folks still ask with a sour tone, "Why? Would you want a dog too? Have you thought this through?"

Well I'll tell you why:

1. We wanted to
2. Entertaining two five year olds and a seven year old is tough work and we needed the help
3. Picking up cheerios is cumbersome 
4. She makes us happy
5. We like fun
6. None of your damn business
7. She encourages us to exercise more
8. She is awesome
9. She makes us smile
10. Still none of your damn business

We realize that our life might strike others as overwhelming, and it is. But we are the ones living it. We are competent adults capable of  making decisions on our own. To assume otherwise is insulting and speaks more to your inability than ours.

Would you tell Michael Jordan how to dribble a basketball? No you wouldn't, because he's Michael Fucking Jordan.  Am I saying that we are the Michael Jordan of big families? Yes I am. Minus the gambling and with more crying. 

Why did we buy a white couch?

If you think I'm wrong then why don't you raise five kids and show me how to do it better.

What's that? You don't know how to? You wouldn't want to?

In that case might I recommend that you provide us with the same advise that I provide test pilots as they approach mach 2? Which is none. My advice to them would be unsolicited, unappreciated, and most of all uneducated.  I know exactly nothing about being in those circumstances so I keep my lip buttoned.

That is not to say that no one should voice an opinion on the matter. I'm speaking of course of the stake holders; those that are directly effected by the decision. As far as I can tell there are three stake holders in this situation; ourselves, Ruthie Anna, and the mom that will occasionally be asked to dog sit. I will now list the stake holders opinions on the adoption below.

Us: For it
Mom: For it
Ruthie Anna: Woof

That's three to zero, the Aye's have it.


Cheers,

L&P

10 Minutes (Adventures in Maggie Rearing Vol. 4)

For those of you not in the know about parenting a kid with special needs, we have to keep our head on a swivel. All day every day. From the time we wake up to... well also while we are asleep, when we sleep. We don' really sleep.  True this can be said of the parenting experience on the whole but I find that the times I let my guard down for Maggie related issues the consequences are especially trying.  Take for instance the morning routine.

6:15 Wake up and begin coffee, breakfast, and making lunches.

6:30 Starting waking the 6 year old up.

6:45 Deliver 6 year old her breakfast and first outfit choice.

6:47 Remind 6 year old her breakfast is getting cold and present second outfit choice.

6:49 Dry 6 year old's tears because she hates the first two outfits, remind her that breakfast is getting cold, attempt to find (weather inappropriate) outfit request.

6:55 Reheat breakfast because it's TOO COLD and explain that the requested clothes are dirty but we can wash them for tomorrow. Help 6 year old into outfit choice 1.

7:00 Deliver Maggie's breakfast, turn on Abba Pandora.

7:02 Remind the twins that it's not TV time yet. Attempt 1 at getting boys to eat.

7:09 Remove all art supplies from the 6 year old, remind her that breakfast is going to get cold again and begin the shoe struggle.

7:11 Remind the twins that it's not TV time yet, feeding attempt 2.

7:15 Begin tooth brushing odyssey.

7:20 Take the 6 year old to school

7:30 Remind the twins it's still not time for TV, feeding attempt 3, and get boys dressed... where did you get a sword?

7:35 Help Maggie get dressed.

7:38 Stop the bleeding, seriously, where did you get a sword?

7:45  Put out the fire (for legal reasons please assume that this is a metaphor)

7:50 Begin watching for the bus.

Now we enter the danger zone and where we get the title for this particular blog entry. Part of the deal with having a kiddo with special needs is that the bus picks her up at the house rather than having to strut her out to a bus stop. For the last several weeks the bus has shown up pretty much right at 8:00 am. It's not uncommon that we miss the bus for reasons that are out of our control. The following is not a complete list but should give you an idea of some of the things that can take longer than tem minutes to remedy and may result in Maggie missing the bus.

• Foodmergency (cold)
• Twin Brawl
• Cat-aclysm
• Foodmergency (hot)
• Pokemeltdown
• Pootasrophy
• Apparel mishap
• T.V.engence
• Egg Failure
• Wafflop
• Shoebacle (hot)
• Total System Failure
• Under caffeination
• Udder caffeination
• Laundry adversity
• Act of God (Abrahamic) 
• Slips
• Spills
• Band Aid Snobbery
• Act of Gods (Hindu)
• Blatant disregard for authority
• Missing socks
• Blight
• Disco Fever 

  The bus driver, a lovely woman, and I have developed a system wherein I give her a thumbs up or thumbs down regarding whether or not we will be utilizing her services that morn . If I'm not at the window then it is likely that someone overslept, someone has a fever, or we are scraping cat innards off of something.

To be clear, I'm not blaming the bus driver for the days that Maggie misses the bus. Nor do I have a better solution for getting her to school on time. Well, not one grounded in reality at least. But just for fun lets say; drone delivery, self driving car, griffin, and magic banana.

The only reason that this is an Adventure in Maggie Rearing is because I arbitrarily selected Maggie's bus pick up time as a snapshot of our home. It could have just as easily been an adventure in punctuality; but I love that picture of Maggie too much to not use it. 

I hope you enjoyed this peak into our home.

Cheers,

L&P

Adventures in Maggie Rearing Vol. 3

Well we haven't had one of these in a while and clearly our sweet Maggie was worried that you'd all forgotten about what an adventure she can be.

One of the most challenging/terrifying/interesting/terrifying things about raising a child that has special needs that is largely nonverbal is that she can't tell you where she's been, what she's thinking, if she's in pain, or if she wants a sandwich.  This isn't to say that we have issues understanding Maggie. For instance, she pretty much always wants a sandwich.

A couple of weeks back we were lucky enough to find ourselves at the coast with family. We were having a great time. By that I mean William had been vomiting enough that we decided it would be a good idea to take him to the Emergency Room.
After all, what family vacation is complete without at least one trip to the hospital.

Long story short, Will is fine.

Back to Maggie.

We were shy one adult, and worried about sweet William when I left Maggie on the porch. Leaving my daughter with food in hand, tablet playing a movie in the other, and water bottle in lap, I let my guard down for the same amount of time that it takes to make one ham sandwich.

I don't mean any kind of fancy panini affair either. Just strait up ham and provolone; no bells or whistles for this gent thank you very much.  Ok maybe some avocado, but come on! It's got the good fat!

Anyways shortly after slathering on some mustard I noticed that Maggie's familiar noises were absent from the porch. I wandered outside and found Maggie's shoes, tablet, sandwich, and water bottle, but the porch was decidedly sans Maggie.

I asked our host and the surrounding children if any of them knew where she was; with all answers in the negative panic began to set in. My first thought was that she may have seen a neighbor's hot tub and decided that it was a good time and place to take a bath.  After all, Maggie views conventional etiquette as optional.  My search resulted in no Maggie. Maggie's older sister and friend began a search of the area.  I was worried that Maggie had decided to take a walk to the beach by herself which could result in the rest of my life having significantly less Maggie than I prefer.

As I encountered strangers I asked them, "Have you seen a child with Down Syndrome? She's wearing tan shorts and she's... most likely the only child with Down Syndrome walking around alone." I was able to figure out that Maggie hadn't made it to the only beach access point that she knew about and before long I had a small group of strangers helping me search.

Thank you strangers.

My second concern was that we were very close to a highway. My anxiety was now growing that Maggie might be struck by a car, or inside a car with someone of ill intent.

I hopped in my car and began making my way towards the highway when I thankfully saw a shoeless Maggie being led by the hand by her sister's friend back towards the beach house. She had been sitting calmly in a small cafe patiently awaiting someone to come find her.

As to how she got to the cafe, we have a few theories.

1. Maggie may have wandered off of the porch and realized that the rocks hurt her bare feet and rather than risk the discomfort, just decided to stay on the smooth asphalt.
2. Maggie may have been wandered off of the porch for reasons we will never know, got somehow turned around, and simply lost her way. This might sound weird considering that she may have only gone thirty or so feet. But keep in mind that she was in an unfamiliar place and her eyesight isn't great.
3. Maggie had been watching the other teens take walks and thought to herself, "Hey, what am I doing hanging out with these little kids? I'm a teenager too! I'm taking myself a walk!"
4. This is the scariest one and may not have occured to me unless I lived in a town with a storied history of human trafficking, but Maggie may have been abducted. I've never kidnapped anyone before but I assume that a kid with special needs might be seen as an easy target.  It's possible, that her would-be abductor lured her off of the porch, realized that someone requiring as much care and attention as Maggie needs would fetch less than ideal market value, and booted her out of their van. I'm making an assumption that this would have been a van. But come on, we were all assuming van in this scenario right?
5. Finally, the stupid scenario. It's possilbe however unlikely that Maggie is a time travler. She may have warped to an alternate dimension in which she rescued a unicorn, fought off zombie hordes, and poured a perfect Manhatten for Fat Tony on the Simpsons.

Sadly and strangely, we will never know the answer. Her total absence from us was between 20 and 30 minutes.  It was a new kind of fear that I hope to never experience again. We are so happy to have her back safe and sound. Also, from now on I'm keeping one eye on her, and one on the provalone.

Cheers,

L&P

Tips and Tricks

So as you, the frequent reader knows, we have five children, a 17 year old, a 15 year old that has Down syndrome with a smattering of autism, a four year old who identifies as a three year old, and twin two year olds. One of the most frequent questions that we get is, "How do you manage?"

Well being that we do this blog not only to share our story but also to help out fellow parents, I thought it would be sporting to answer this question with our organization tips that we use to help keep our sanity.

So here it goes.

1. Put all of the kids' diapers on at once: Changing a diaper takes about 3 minutes. Since the boys have twin power, they have synchronized their bowel movements, every time there is a diaper change, there are two diaper changes. That means roughly 6 minutes for every poo. The way that we shave time off of this chore is to put 7 or 8 diapers on the kid first thing in the morning. Sure the clothes are a bit snug but the time you save just stripping off only the outer most diaper is invaluable.
2. Always wear a hockey mask. Kids can be messy; we have a hard enough time trying to keep them clean. A hockey mask not only keeps the kids messes off of me, but it is surprisingly comfortable. Also kids LOVE masks!
3. Cry Driving: When you have three toddlers begging for your attention at all times, the tension mounts. Being overwhelmed isn't an occasional occurrence; it's a way of life! I've found that the best way to release some of that pressure is when behind the wheel. Not only does this assist in getting out of tickets (no officer with a heart can ticket a sobbing 37 year old man) but it models good driving habits for our 17 year old. Namely, being able to multitask when driving.
4. If you have a child with special needs then you know the frustration of trying to get the school district to follow through with your kids IEP (Individual Education Plan). Save time and frustration by assuming everyone involved in your child's education is stupid. During the IEP meeting speak slowly and clearly. Bring shiny objects to keep thier attention and a punching bag to release the rage in a safe place. (Side note, this does not apply to Maggie's grade school teacher, that woman is a mother f'n saint!)
5. Remember not to neglect the emotional needs of your spouse. Make eye contact at least three times a day.
6. Showering can take up to 20 minutes and is only considered a necessary daily activity in some westernized countries. Aquaman never showers and he is the King of Atlantis. If not showering daily is good enough for royalty, then maybe it's good enough for you too. Think about it.
7. Sleep is a necessary evil, but the bible says that we should work against evil. Utilize the knowledge that god gave you and fight that drowsy eyed demon with the chemistry of amphetamines.
8. Maintaining the safety and security of your home is your responsibility as the adult in the home. Purchase a hand gun and fire it into the air outside your home at random times throughout the day and night. Soon your reputation will grow and no one will dare come within spitting distance of your abode.
9. A pet is a great way to teach your child responsibility. But if your child neglects the dog or cat then guess who’s on the hook for animal neglect? Not your toddler that's for sure! Cut out the middle man and just leave an animal carcass someplace in your house.
10. Take time for yourself. Of course, no one in your house will let you do this, because they are all selfish a-holes that have no respect for your time, personal space, or all the hard work you put into maintaining the home. So just cross your fingers and hope that you don't lose your damn mind before they are all in school and it buys you three f'n seconds of peace and quiet.

Cheers

L&P

p.s. this is satire, we love our kids, please don't report us.

R Word Part Deux

      A while back I posted this blog including some arguments and counter arguments regarding use of the R word. Something that I did not cover well in this entry was why the R word should not be used. While this might be obvious to some, others may require a bit of explanation. Being that we are advocates for special needs education, it makes sense that we should also be advocates for educating others about those with special needs.

      I suppose I can start by telling you that what inspired this post was an exchange with an old friend who had used the R word in a face book post. I feel compelled to point out to anyone that I feel is smart enough to discuss the topic without feeling attacked that using the R word is thoughtless and rude. I have found that I get better success when these discussions are private and I do my best to make sure the other party does not feel attacked or shamed.

     The discussion I had with this particular friend was a perfect example of how it should go. The following is a quick summation of how the discussion went.

Me: Hey dude, that hurts my feelings.

Friend: I’m sorry, I wasn't trying to be a dick.

Me: I know you’re not a dick you are awesome.

Friend: No YOU are awesome.

Me: No you are awesome, also handsome.

Friend: You too!

Hugs.

So without further adieu,

1. It is Rude: If I was to meet a person named Richard and I immediately began to refer to him as Dick I would be considered rude. If said Richard was polite and patient and said something along the lines of, “I prefer Rich or Richard” but then I continued to call him Dick, then which of us would be the dick? I think you know the answer….Its me, just in case you didn't know the answer. In case you had not received the memo, no one wants to be called the R word. The R word is hate speech.
2. It makes you look like an asshole: Like I just stated using the R word is hate speech. If you would be comfortable substituting any other word you know to be hate speech for the R word and would not bat an eye. Then congratulations, you, sir or madam, are an asshole. However, if you would be comfortable using the R word, but hesitate at use of another word that is considered hate speech, maybe one that starts with the letter N, then maybe you are just a hypocrite and a coward.. This brings me to my next point.
3. If you use the R word then you are bully: Sarah Silverman, made an excellent point (not about the R word but about something else), when discussing the use of hate speech. Some hate speech is considered a bit naughty, but it is socially acceptable. While other hate speech makes you a social pariah. For example; racial slurs about Asians are acceptable on prime time television, while hate speech about African Americans is a big no no. The point that Ms. Silverman makes is that the reason for this is that no one is afraid of Asians so it is ok to make fun of them. Whether she means physically afraid, or financially afraid (think bus boycott) I do not know. The same reasoning applies to use of the R word. If someone lets loose with one slur but hesitates at other slurs, then we can pretty easily draw the conclusion that it is because they either do not fear or do not respect one of those groups. What makes this person a bully is that they are essentially beating up the group that can defend itself the least. Speaking of respect…
4. You are also disrespecting the advocates: Every aspect of our lives is affected by the fact that we have a child with special needs. I mean EVERY. I will not list these off as I feel that would become tedious and I have a hard enough time staying on task. I may go into this in greater detail at a later date, but for now I’m going to just ask that you trust me when I say that we do not even get a break when we are asleep. We work hard to try to ensure that Maggie has the best quality of life possible. We take a lot of pride in this while at the same time always feel as though we could be doing more. When someone uses the R word, they are not only disrespecting our child, but also us because they are being dismissive of our child who also deserves respect. 
5. You are on the losing side of history: Much can be told about a culture by it’s language. When I was a kid I was told that Eskimos had 100 different words for snow. I did not realize until I was older that this was not a reflection of how boring it must be to talk to an Eskimo, but of how big a role snow played to the lives of Eskimos. The huge number of words for snow reflected the many different kinds of snow and subtle differences which would most likely be lost to me. Also, I’m pretty sure that the number 100 is wrong but I don’t feel like looking it up. The reason I bring this up is because our language is a snapshot of who, when, and where we are. If I was to talk to an elderly person from the south and they dropped the N word but did not seem to do so in a hateful fashion, I would probably just assume that the reason that they thought this was an acceptable thing to do was because, it is a reflection of their era. While this person’s grandchildren would be horrified (I hope), at the cavalier use of such a hateful word, it would be a peek into a time when it was not considered a hateful word at all. I am not psychic but when considering current trends towards tolerance and cultural sensitivity, I think it is safe to assume that the R word is going the way of the Dodo. So please, if you do not want to embarrass your grandchildren, be a bully, be an asshole, or just be disrespectful to yours truly, start to make correction action to your language now.

I realize that this entry may not effect any change whatsoever.  Some who read this may consider me overly 

sensitive.  We are Maggie's parents and it is our responsibility to advocate for her at every turn. If you still 

feel the need to use this word I will encourage you to remember what Jesus said.

"Don't be a dick."

Jesus is a guy I worked at a restaurant with.

L&P 

Conversations We Must Now Have

            As you may suspect, now that we are a family of seven we are a bit of a spectacle when out in public.  The combination of a beautiful teenage daughter, a special needs kid, a two year old that is into EVERYTHING, and our ATV stroller carrying the twins tends to grab a bit of attention.  Our previous post pointed out some of the comments we have been assaulted with, though the individuals making the statements and asking the questions were well meaning I’m sure.  The following is not an actual conversation we have had, but combination of the greatest hits rolled into one whiz bang comedic free-for-all for you to enjoy.  Please keep in mind that these are all snippets of conversations with STRANGERS.

Stanger: Wow! That’s a lot of kids!

Us: Yeah, we have five in total.

Stranger: FIVE?! Wow, what ages?

Us: 15, 14, 2 and the twins are 10 months.

Stranger:  Well at least the older two can help out.

Us:  Well the 14 year old has Down Syndrome and as much as we love her, she is not much help when it comes to child care.

Stanger: Well I just want to thank you for not having an abortion.

Us: Exuse me?

Stranger: So many people just be bothered to raise their children these days.

Us: Stunned silence

Stranger: Well at least the 15 year old can help.

Us: We try to not make the 15 year old do to much.

Stranger: Why?

Us: Because she is 15 and if she gets good at child care then the terror of being a teen mom may dissolve. We prefer for her to watch us lose our shit all the time so the idea of parenthood appears to be a nightmarish hellscape.

 Stranger: Oh…Five kids huh… So… You ever been to Utah?

Us: Utah? No, why would we go to Utah?

Stranger: No reason, just asking is all.

Us: Oh, ok.

Stranger: What do you think of that new pope?

Us: Um.. No opinion really, why?

Stranger: Oh, no reason just asking.

Us: Ok…

Stranger: So the twins are both boys?

Us: Yeah.

Stranger: Did you get them snipped?

Us: Excuse me?

Stranger: Did you get them circumcised?

Us: Um, you seem awfully interested in my babies’ penis.

Stranger: No not at all, I just heard that a lot of people aren't doing that anymore.

Us: Well I gotta-

Stranger: Did you get your kids vaccinated?

Us: Yes, because science.

Stranger: Oh… Ok, well I guess each parent makes their own choices.

Us: Indeed we do. Can I just get my Happy Meals now? The kids are getting hungry.

Stranger: Oh sure, here you are, I’ll be praying for you.

Us: I’m not sure that’s such a hot idea.

Stranger: Why not?

Us: Prayer is what we used for birth control.  

Thanks again for your patients, we know that we have only posted a few times since we had the boys but we are trying to find a rhythm so we can post more on the regular.  

Cheers

L&P 

Adventures in Maggie Rearing Vol. 2

The best thing about being a part of Maggie's life is that it is never, EVER, boring.  Being Maggie's parent forces one to develop a 6th or maybe even 7th sense. Prior being her parent I was a deep sleeper.  Now I wake up when the refrigerator is opened on the other side of the house. This is due to the PTSD that I now have from cleaning up the messes that Maggie makes when she "cooks". When Maggie is getting into her shenanigans the hair on the back of my neck begins to stand up.  The following are examples of instances in which I ignored that feeling.

Exhibit A

  The above photo is taken from the second story of our home.  Due to the fact that Maggie is largely non-verbal we are typically forced to guess at her intentions.  This picture was taken shortly after we purchased the movie Tangled.  Our working hypothesis is that Maggie was recreating some of the scenes in which the main character jumps out of the window.  Barbie's taking flight is not a new occurrence though, prior to moving to this address they would frequently find themselves pitched into our neighbors yard.  Our neighbor at the time had a good heart and would simply toss them back.  He once stated that he believed they were "camping".

Exhibit B

Maggie loves the water.  Swimming is her favorite activity.   Even if the water isn't deep enough, she is content to sit in a wading pool for hours on end.  When the weather turned too cold for her to enjoy this activity outside, Maggie thought outside the box. I believe we were napping when she first dragged this pool in from the yard because if memory serves what woke us up was the frequent trips up and down the stairs as she filled a 16 ounce glass up in the bathroom sink over and over, then trotted it downstairs and tossed the contents into the pool.  Had I been a deeper sleeper, she may have eventually succeeded.

Exhibit C

This picture was taken shortly after we brought Maggie's little sister Merritt home from the hospital for the first time.  Maggie must have been sick of the late night cry fests and lack of attention.  She packed what she needed for a life on the road, (a suite case filled with Barbies) and headed out.  Luckily she did not get far before my wife convinced her to head back home.

Lately, Maggie's sleeping meds have been failing us and she has been waking up pretty regularly at 1:30 in the a.m.. She almost always stays in her room playing so it has not been much of a disturbance.  The biggest issue is that part of her play includes random screams, singing, and banging on the wall.   Most parents would be concerned about the screaming, but when I check on her I am greeted with an insistent finger pointing for me to leave and either the word "GO" or simply her blowing raspberries at me.

The Costuming is VERY important

It would seem that when I enter her room I am interrupting the delicate role play that she has created and am breaking her concentration.  She may only be saying "go" but the way she says it make it feel more like she is saying, "Do you have any IDEA how hard I have been working on this scene?!"

She has done a better job than we expected of adjusting to the twins joining our family.  We have had a few requests for picture featuring her and the twins.  She may have accepted that they are now in the house, but she still is not crazy enough about the idea that she is willing to sit for a photo.

More Adventures in Maggie Rearing in the future.

L&P

Adventures in You Can't Make This Shit Up Volume 4...Sigh

It would appear that fate, much like the Hells Angels, Bears, and Muslims, does not appreciate being called out.  We closed our last post recapping our hellacious week with the words, "bring it on" directing this taunt at the coming days.  Oh how we have lived to regret that decision.

At about 9:30 this morning we received a call from Maggie's school informing us that she'd fallen and had a seizure.  We still do not know how she fell but I have my suspicions.

I'll get you you sumbitch!

   This was particularly scary because even though Maggie does have Down Syndrome, chronic pneumonia, asthma, a history of recurring periorbital cellulitis, has had three heart surgeries, a diaphragmatic hernia, extensive dental surgery, ear tubes, adenoidectomy, and is non verbal, a seizure is a new trick for her.

Long story short, we are home and she is fine as far as we can tell.  The last few posts that we have put up have been about how life has crapped on us.  I don't want to do that today.  Today I am going to try to be thankful for what I do have.  This may be because I watched part of "Half the Sky" last night and I am very aware of how lucky I am in most things.

Also, apparently there are advantages to educating women.

 I want to talk a bit about how thankful I am to the paramedics who rushed to her school. I am also thankful to the doctor that busted her ass in medical school and I am guessing accrued a crazy amount of student loan debt, that assessed my daughter.  I am thankful to the nurses that have also worked hard through school and most likely accrued a crazy amount of student loan debt.  I am also thankful to the scientists that developed the medications that were used today.  I am also thankful to the scientists and engineers that developed the and built the CT scan that we would have used had Maggie been able to sit still long enough to use them.

Thank you for the long hours you spend away from your families, for the long nights you spent studying, for the times that you get soaked in any number of bodily fluids, for the verbal abuse that you must endure from angry and frightened families when the news that you must deliver is not good.  Thank you.

So please, next time you talk to a doctor, give them a hug.  If you are in your local coffee shop behind someone in scrubs and can afford it, buy their drink for them.  If you are at a party and you meet someone that states that they work in a lab and are researching medications, offer that person a hand job.  Assuming you have consent and it is gender appropriate.  Also, if they work in a lab, odds are they need the love'n.

L&P
  

Why do you ask?

As most of you know I have an 11 year old daughter with Down syndrome.  She brings tons of joy and laughter to our lives, but she is by no means "very loving" or "really sweet" she is her own person with likes and dislikes and mood swings, orneriness, silliness and sweetness. I really don't believe she falls into any generalization about persons with Down syndrome.  She has had many health problems including two open heart surgeries and one closed heart surgery, diaphragmatic hernia repair, and too many other surgeries to count, several hospitalizations due to pneumonia's and other infections.  It is most likely that due to these surgeries and other illnesses she is more developmentally delayed than she would have been had she not experienced so many illnesses.  It often feels like my life is largely devoted to keeping her healthy. She also has, what we like to refer to as a "side" of autism.  She is largely non-verbal, but she uses a device to help her communicate, knows a few signs and has vocabulary of about 100 words, but her receptive language is expansive. 

I adore her.  I would not want my life to be any other way.  She is perfect.  I would choose her again and again.  My love for her is as deep and complex as it is for my other "typical" children.

What I find totally fascinating is that I am constantly asked if I knew she had Down syndrome before she was born.  The answer is YES, I did know.  I was 11 weeks pregnant when I learned I was expecting.  When I had an ultrasound to see how far along I was, the ultrasound tech detected thickening on the back of her neck which would indicate a chromosomal abnormality.  I then had an early amniocentesis which clearly identified her chromosomal abnormality as Trisomy 21, meaning she had an extra 21st chromosome.   I was devastated. I did a lot of grieving.  I felt like I would never be able to live a "normal" life again.  I did not want to be different than everyone else.  But as I pondered all of the families I knew, I realized that all of us are different in some way.  Some families have children with ADHD, Autism or drug addiction.  Very few of us are able to know what our children face before they are born.  So for me, continuing the pregnancy was a no brainer. She was my BABY, and I already loved her and wanted to protect her.

In the months leading up to her delivery, I did lots of grieving.  I also did lots of research.  I knew through a fetal echocaridogram that she would need open heart surgery by the time she was 3 months old.  I learned that kids with Down syndrome benefit from early intervention and lots of stimulation.  I prepared my life to welcome this new baby into our family.  I had friends who agreed with my decision to continue my pregnancy and I lost a few friends who thought it was cruel to bring her into the world.  For me the decision was deeply personal, not something I thought anyone else had the right to weigh in on. 

By the time Maggie was born I had prepared myself in every way I knew.  When she arrived, I was shocked by was her perfection!  She was so beautiful with a head full of silvery hair and wise blue eyes that could melt your heart.  I had done most of my grieving prior to her arrival and was able to rejoice in her flawlessness. I was able to open my heart to her and begin the battle for her survival.
So the answer is yes, I knew.  That is the beginning of Maggie’s story and my journey as her mom.  She is a blessing, as all children are.  She is zany, and I mean zany.  My life is filled to the brim with adventure.  She challenges me to be a better mother and a better person.
Please feel free to ask me questions about Down syndrome, I love to answer them.  In many ways she is different than many children, but her similarities are many as well.

This is Maggie. She has had an AV canal repair at 11 weeks, and Mitral valve repair at 3 years old, and a vascular ring repair at 9. She is quite a little character!

Adventures in You Can't Make This Shit Up Vol. 2

As a parent of a special needs child there are many challenges.  Eventually you get used to the stares and rude questions.  But in the grand scheme of things the curiosity and ignorance of strangers is small potatoes.  The daily hurdle that is the toughest to clear for our family is the potty training issue.

I feel that I should give some background on our kiddo to lend some perspective.  Our 12 year old was born with Down Syndrome.  Yes my wife knew ahead of time and that is a story that will be addressed at a later date.  Children with Down Syndrome vary in ability much like other children.  There are those that are super kids and, physical differences not withstanding, have very little difference them and typical children.  Think of Lauren Potter from Glee.

Also known as, the girl that turns me weepy.

Then there are children on the other end of the spectrum.  Our child is largely non-verbal, has a dash of autism, has had three heart surgeries, one of which was botched which caused her intestines to grow up onto her lungs which reduced her lung capacity, and chronic pneumonia.  Also asthma, and as I mentioned earlier, the potty training issue.

Over the past couple of years we have narrowed down the time in which she needs to spend in pull ups to the sleeping hours. This is not to say that there are not accidents, just that we have about a 30% success rate of using the toilet during the day.  This is only with number one.  Number two usually ends up on the bedroom floor and picked up via rubber gloves and much gagging.  This is also why a phrase commonly heard in special needs house holds is, "Please tell me that's chocolate...dammit."

This brings me to the events of two mornings ago.   While our child has mastered getting herself out of her clothes, she still requires a bit of coaching in how to get into them.  Many have been the morning when she has prepared herself for school in a Halloween costume.  Part of me things, F it, she looks cool.  The other part of me thinks, she already gets enough weird looks and takes corrective action.

We were to the getting out of pajamas stage of preparing for school when I saw what would ultimately lead to this entry.  You see my young one has her own special way of doing many things. I believe that this is brought about, not by the fact that she has Down Syndrome, but by the fact that she is awesome.  For example, do you like ranch dressing? I bet you do and I bet that you like to pour it into a bowl and extract with carrot sticks and celery.  Well my child took one look at that equation and said, fuck the rabbit food, I'm digging in with a spoon!

Why didn't I think of that?

As she has a unique system for all things, removing her pull up is no exception.  Rather than lowering said pull up to her ankles and simply stepping out, my daughter removes her pull up Hulk Hogan Style and simply rips it off her body.  I swear when she does so I can hear in the distance someone singing, "I am a real American!"

99 times out of 100 this is not a big deal.  Unfortunately this was that 100th time.  You see on the laundry list of health issues that my child is host too, constipation one of my least favorites.  True it does lead to less clean up, but it also leads to occasional poo pellets in the base of her pull up.  Again, not usually a big deal but when the fervor with which she removed her pull up met the elasticity of the pull ups waist band the result was a poo slingshot which peppered my face and neck and chest and arms with her leavings.
 My  reaction was, of course a quick gag followed by a flurry of face wiping and "ohmygodohmygodohmygod".

As a parent to a special needs child I have what many would consider, an interesting life.  I deal with things that would never even enter the world of most parents.  But this was first time that I have actually ever been, "Shit faced".


L&P