"See you soon"

This morning the kids and I said "see you soon" to Quentin again. We have become accustom to our see you soons being at the base cafe or the pier. Those always felt so cold and without emotion, even though the sadness and love was so thick in the air. I would have given anything to have done out see you soons outside that dumpy cafe today. Standing on the sidewalk at the airport departure door was worse than the cafe. I couldn't help but feel resentment in that moment as I watched couples hug and get teary-eyed, only to hear one say "I'll see you in a week."

The one thing I hated most about the cafe see you soons is how close it is to our house. I could watch from our kitchen window as the buses pulled away. For days after, I would glance out the window in hopes of see the buses come back, just in case they had made some mistake and it wasn't really time for them to go back out the sea. Although that never happened (even if there had been a mistake, I am pretty sure the Navy would never admit it and would keep the guys just so they don't have to admit they messed up), it was always a little comforting to go grab a sexy coffee after saying see you soon and seeing familiar faces, normally with mascara on their cheeks too and knowing you were part of a big family. And even when you were the only one ordering coffee while trying your damnedest not to cry, you were not the first one to do it and would promptly be given a reassuring smile or a hug. There is none of that at airport see you soons.

Another shitty thing about airport see you soons is how far away it is from Target. I am sure there are several Targets between the airport and our home, but they aren't my Target. Retail therapy always helps those first few days. I always pick up a little something to make the house feel more homey. I know that a few new baskets won't fill void, but it helps a bit and who doesn't like new baskets?

So far the kids are doing remarkably well. I am sure in a few months when we are used to getting prepared for homecomings, only to not yet be half way done it will hit us all like a ton of bricks. But for today, we are going to curl up on the couch, watch movies and be ok.

Homecoming...

I have to admit that one of my guilty pleasures is watching shows like "Coming Home" while the hubby is away. For those of you that have never watched the show, it is about military homecomings and spews love and pure awesomeness. If you are a military family, you know this really isn't how it happens. If you aren't a military family, let me explain how a real military homecoming works:

Days before arrival: You frantically clean and try to make sure everything is perfect only to have at least one child (or pet) sabotaging your efforts.

Day before: You break out the weed whacker and attack your leg hair that has no doubt been left alone for the last few months.

Day of: You primp for hours while taking caffeine intravenously because you are too excited to sleep. You then get all the children looking somewhat clean and cute into the car and go and wait for hours because the time you are told they would arrive and when they arrive are two very different things. You spend this day on cloud nine and your face hurts from smiling (this is where TV shows like to stop filming).

The following few days: You are happy to have your loved one home, but are growing more annoyed by the pile of stuff that smells like boat (which is a mixture of diesel fuel, BO and recycled farts) which has taken over your bedroom floor. At this time you are also trying to integrate service member back into routines, but end up getting frustrated because they don't do things your way.

A week after arrival: You are ready to have you time and will run just about any errand that comes up as long as you can do it alone. Most days I would volunteer to get the oil changed and sit in a stinky mechanic shop if I can just go alone.

What I would really like TLC to show is a week after homecoming when the wife is laying in bed, hears a man's voice and freaks the fuck out. That has happened to me twice in the last two weeks. I woke up to the hubby talking in his sleep and I jumped out of bed forgetting that he was home and wondering how a stranger made it past the dog (who really would be useless if someone broke in). Maybe I should suggest this to the show.

You owe me!

Dear Husband,


First, let me start off by saying that I appreciate all that you do for us, but you owe me big time for the shit I have dealt with this deployment. I am sure you won't read this until after you leave for your next deployment and by then it will be too late to give me the massage that I have earned these last few months, but I still think it is important to put it out there that YOU OWE ME! Normally, I think that our jobs are equally difficult but all that changed tonight. Let's back up a bit, last night it was brought to my attention that the water heater was leaking. At the time it was just a couple of drops. Yeah, those few drips have now turned into a stream of water. So all that nice clean laundry that I have avoided folding over the last 5 days is now in need of being washed again and it will probably be left sitting, clean but unfolded, for an extra week just because I will be too frustrated to look at it. This really is the straw that broke the camel's back. Let's recap this deployment and all the random crap that has happened:

• Several ER trips
• Crap inducing spiders
• Fleas
• The daily assault from Hurricane Teagan
• The water heater
• The dead rat with the waving eye 
• Waving eye's lunch in the engine 

All of that plus normal day to day crap (I mean that literally). I deserve a night in a hotel with no children and a bottle of wine, completely alone.  I will call you from the hotel to make sure that the children have not retaliated and left you hog tied in the corner.

Love,
Your loving wife

How long do you keep going?

Yesterday we learned that the DNA results for Josie are normal and no explanation for the EMG results. While we knew this was a possibility, it was still a hard blow. I thought we were within weeks of a final diagnosis. Now, we are back to more referrals, more appointments and more tests. I am to the point now where I don't know how much more I can do, how many more doctors we can meet and how many procedures I can put Josie through. A three year old shouldn't have a favorite hospital, but Josie does. She knows her way around the hospitals better than I do. Now we are left to decide how much longer to go down the path of tests and appointments. Do we see it out with the doctors we are seeing now and then stop? Do we see the new specialists? Do we see the specialists, but refuse any invasive tests? Do we set up a cot in the hospital parking lot and stay there until we get our answers? It is times like these that I wish I had a magic 8 ball or a book to tell me what to do. Apparently a book about what to do if your children are a medical anomaly has yet to be published. Which ever path we choose, I hope she understands when she is older that her dad and I did what we thought was best for her.

Thinking happy thoughts

It would be very easy to focus on all the negative and challenging things that have happened lately around the house. Instead of focusing on the kids being ill, another diet modification and the general stress of having a deployed spouse, today I choose to focus on the positives.

Earlier this week, Josie promised to stop putting boogers in my hair while I slept. I had no idea that this was something she needed to stop doing, but I will be thankful that she promised to stop.

Hailey has been in school for a few months and so far there have been no reports of her calling anyone incredibly inappropriate names. She must be saving all of her spunkiness for when she gets home. I am thankful that we haven't had to have a conversation about Hailey calling someone "Sugartits" at school.

Teague started using a new word consistently. It is "wow" and he uses it when he can grab his genitals. It is odd, but it is progress and great ammunition to have against him when he starts dating... in 20 years.

I am also thankful for  my carpet shampooer. For those of you that don't have children, this may sound silly. But I am sure for all of you that have ever experienced a child with an upset stomach at 1 am how this machine is the best thing out there.

On a more serious note, I am thankful for my husband's career. It takes him away from home more often than he is home, but it provides us with a roof over our head, a paycheck (which at times is screwy) and insurance. Earlier this week, the kids and I had the opportunity to remember how lucky we are. We delivered food to a group of people that had set up a make shift tent on the side of the road to live. It becomes easy to forget how easy we truly have it and get annoyed that once again the laundry needs to be washed or groan that once again it is time to come up with something new and exciting to feed the kids. Helping others serves as a good reminder to the kids and myself that all people deserve the same respect and kindness.

I am also so thankful this week for my friends that are like a second family. Tonight I was supposed to be at the Military Special Needs Network meeting, but due to Hailey's tummy bug, we had to stay home. That is a draw back to having a deployed spouse, when a child becomes sick everything else needs to be handed over to someone else. I am thankful to work with such a fantastic group. Not only do they understand the challenges of military life with children with extra needs, they are there to lend an ear, rustle up a sitter late at night so they can get me my car or be the gracious recipient of 5 dozen ducks that look like they have poo on their heads. I know that I can count on them for anything, which makes our journey easier. 

So tonight, instead of focusing on the literally shitty week we have had, I choose to focus on all the good in our lives.

Cleaning Fairy, hear my prayers

This month both my mom and dad are coming for a visit. I haven't seen either in ages, so I am beyond excited for them to come visit and spend time with the kids. The only downside is that I now need to start getting ready for them to visit. My dad comes to visit first, which is nice because he will be like my trial run.

I know most people make sure their home is clean when they have visitors, but I feel extra pressure right now. If my husband weren't deployed and my parents came to visit and the house was less than spotless, it would be okay because I have three small and spastic children. But now that the husband isn't here, a messy house is the sign of me not coping well with doing things on my own. In actuality, I am coping just fine and because there is only one of me here to shower the kids with affection, sometimes the laundry ends up being thrown on my bed only to go untouched for a week. I am totally cool with that. I sleep on the couch, so the laundry can spread out on my bed and relax as long as it doesn't mind spooning with the cat. I would hope that my parents could see that the toy room is a disaster and say "look at that, Miranda chose to take the kids to the museum rather than spend 4 hours anally putting away every toy" unfortunately that isn't how things work.

In no way am I criticizing my parents. I know that if it were me visiting my children in 25 years and their spouse was deployed, I might worry a bit if the house looked messy. However, I am hoping that after spending an hour in the house I would realize that I am sure my children did all they could, but with a child that steals the snail out of the fish tank and carries it around in his mouth, another that insists you are her personal DJ and the third that follows you around constantly asking if you are mad at her, that sometimes a clean house just won't happen.

Wish me luck as I battle the never ending mess that is my house!

Hooray?

Over the past few weeks Josie has been been struggling more and more when it comes to eating and drinking. Every meal is met with "it feels stuck" or "that hurts my throat." I haven't ignore it, but just not give her much attention when she says it. I don't want it to be something that she turns into a game and then I don't know when things are really bothering her. Well, after a weekend of hardly any eating on her part, I put a call into the ped to request a swallow study a few months early. In the past the ped has called me "that mom" which at first really bugged me, but if he calls me it again I will tell him yes, I am "that mom."  I am the mom that forced you to stop with the wait and sees and get us into the best specialists in the area, on top of making you send our records to the leaders in pediatric swallowing disorders in the country. And because I am "that mom," we have crossed things off the list of possible diagnosis and are zeroing in on one. I am proud to be "that mom" and you can suck it.

Anyway, his office called back first thing this morning and already put in the referral to get the swallow study done and that he wants us in as soon as possible, which is great because her routine swallow study isn't until December and I am not happy waiting that long. I am happy that he has done as I wish, but I almost wish that we haven't gotten so familiar that he knows the best thing for him to do is do what I ask the first time. I am pretty sure he knows that if he didn't agree to it over the phone, I would be in his office with all three monkeys to request it and walk out with my referral. It is really best for all of us in the long run.

So hooray for getting the referral, but unhooray for needing it.

Infested

At 10:30 last night I was blissfully watching tv and stuffing my face with potato soup when out of nowhere my nose holes came under attack. I was pretty sure that my dog had died and the smell was his decomposing carcass. It seemed highly unlikely since I had just let him outside 20 minutes earlier, but I knew the smell was coming from him. Upon confirming that he was still alive, I then had to make sure it was not a shart. I didn't want that kind of surprise the next day. I am happy to say that my floor was shit free. While trying to coax the old man to his feet, I noticed that he had little raised bumps on him which usually means allergies. I haven't changed his food in months and he has never had fall allergies, but he is allergic to fleas. Then a giant red flag goes off in my head. Earlier in the day, my neighbor said her dog is getting over fleas. The neighbor that lives right next door. FUCK! Sure enough, within a minute of looking for the little buggers, I had found 2. Thankfully I am a freak and keep plenty of flea stuff in the house for the dog, unfortunately all the flea medicine in the world will not rid our house of the fumes escaping his ass. The cat did not fair as well and ended up needing a bath. After a good mauling, Fazizzo (yes, that is the cat's name) is nice and clean and I spent the night feeling like I had bugs all over me. Now we are off to get stuff to spray the yard and flea collars that I will be rocking as anklets for a while.

Life is so unfair!

Today, Hailey was her happy little self when I picked her up until we were about a mile from school. She became quiet, which for anyone who knows that child knows that isn't normal. When I asked her what was up, she gave me this look like she was really thinking about something. After a minute she went on to tell me a story about how she spilled something at school, so she went to grab a sponge because the sponge would do a better job cleaning than a rag, and Suzie Sillypants was talking about this that and everything else, and how she loved Suzie Sillypants' socks and there was something shiny in the corner and how she heard a weird sound coming from the bathroom and since the door was open she walked right in only to see a little boy's butt and his pee going into the toilet. I am not sure how she did it, but I think she told me the whole story without ever pausing for a breath. So now, we are walking into the Commissary and Hailey is talking about butt cheeks and standing up to pee. By the time we hit the produce section, Hailey is in tears because she has to sit to pee; at one point she was wailing "Life is so unfair! Why do I have to sit down to pee?" It is a good thing that I dressed nicely to go to the store today, I would hate for people to think we were trashy.

The side effects of Autumn

I never thought that I would be cursing Autumn for me having to pick feces up off the floor, but that is what I was doing 30 minutes ago. Our lovely home becomes a spider sanctuary in the cold months. It doesn't matter how often we spray, the little buggers still manage to creep in. Well tonight, a not so little bugger decided it would be awesome to climb on Josie mid-dump. Little Miss Muffit was scared from her tuffet and ran away... while still pooping. The spider is now dead. Not going to lie, when Josie freaked out I thought "How bad could it be?" I am surprised there wasn't a trail of my own urine next to Josie's deposits. The bastard was huge, but at least he is now dead.

Damn you, Autumn. Damn you.

ETA- I have been informed it was a wolf spider. Google that and tell me you wouldn't promptly crap the floor as you flee if one landed on you.

What a day!

I think I have managed to feel every emotion possible since waking up today. Today was Speech day for Teague. He has been doing well with Robin and you can tell he has really been trying, that is until today. He didn't make a sound, unless you could screaming and crying a sound. He was loud, but not really trying to communicating what he wanted. He also refused to use the few signs that he knows. It was beyond frustrating, but at the same time, Robin was able to see what he is typically like at home. When he wanted something, he jimmied the child proof locks on the toy drawers. If he wanted something opened, he would throw it at Robin or hit it on the floor. Robin is wonderful and patient, more patient than me. She told me that although Teague is severely delayed, there is hope he can catch up within a years time.

After this disappointment that was speech, it was so nice to hear that someone whom I care about deeply is doing well. I won't go more into it, I know she is going to read this and know she was in my thoughts all day.

Then this afternoon, I had the opportunity to meet with our Congressman's office to discuss Tricare benefits, ECHO and respite. I never would have thought that I would be doing something like that, but I have to say I am happy I did and hopeful the issues my fellow EFM families are dealing with will get resolved...eventually.

Hailey has been doing so well at school. She is two weeks in and she has already learned so much. She has taken to reading like it is going out of style. I am so proud of her, but there is so much guilt that comes along with that pride. I find myself questioning whether Hailey is so far ahead because I was able to spend so much more time with her as a child and Teague is so behind because he doesn't get that same attention.

How can I forget about Teague and my coffee. This is when grateful comes in. Teague grabbed my cup of coffee (the monkey stood on a drum so he could reach over the babygate into the kitchen) and spilled it all over himself. I am not grateful for that, but rather that he was unhurt and I was able to call a friend that would calm me down and let me know what to watch for. Disappointment soon followed as I was supposed to be going over to one of my favorite people in the World's house and he and I were in no shape to go.

Josie was just down here even though it is hours past her bedtime. I could hear that all too familiar breathing before she even rounded the corner to the living room. I had planned on getting more Albuterol on Tuesday when the kids see the ped since we are very low, I hope we make it until then. I was able to give her a breathing treatment and the wheezing lessened. So because I am that type of person, I am debating if I should shower now in case we need to go to the doctor at a moments notice or wait until morning. I have found you get treated better when the doctors can't smell you from across the room. It sounds like such an odd thing to debate, but with Quent being gone, I worry that if I shower now, Josie will wake up again and since she is such a little zombie when she wakes up, she wouldn't think to check the shower, panic and make things worse. And if I wait until morning, there is a good chance that I will be smelled by doctors far before they can see me. This is when the loneliness kicks in the most; when I can't turn to Quent and ask him how terrible does my hair really look or if he could keep an extra ear on the kids while I hope in the shower and get the "just in case" bag ready. One would think that I would have that all set to go, but since I always forget that we are out of diapers or thickener packets, that is the first place to get raided.

You may be wondering how often I forget that we are out of diapers. Honestly, every time we finish a box. We have had some doozies as far as make shift diapers are concerned. After Teague was born, Josie was still in diapers and I forgot she didn't have any. Supplied with hospital grade maxi pads, the wonderful mesh panties and some duct tape we were saved for the night. Thank goodness she wasn't in pull-ups, that thing wasn't going anywhere.

And here comes happiness and love. I have decided to rock a dirty ponytail if I need to leave the house, make sure that I am not visibly dirty with the use of wet wipes and watch Burlesque. I am sure that isn't the normal feelings associated with that movie, but when I saw this movie in the theater I was able to go with my sister and my mom last Thanksgiving. The last time that we were together for something other than a funeral was four years ago. Although I talk to them both all the time (I credit them with my sanity), it was just so nice to be able to do something as simple as go to the movies with them.

And this is why we are done having kids...

It is 9:05, I have yet to have my coffee but I have already scrubbed crap off of bedroom walls. Last night in my hurry for peace and quiet, I forgot to put a diaper on Teague and put him to bed in soccer shorts. You know it is never a good thing when you smell him before even walking up the stair and you can hear him laughing hysterically while clapping. I was greeted by something straight out of a horror movie, but instead of blood it was shit. Everywhere. Even poor Croad the Toad was not spared, but he had a new log to climb on.

While I was dealing with that mess, the girls were eating breakfast. I am not sure what words were exchanged between the two, but something obviously was said to anger Josie. Using her wonderful 3-year old logic, the only reasonable thing to do would be dump a bowl of Cheerios (complete with thickened milk) all over her sister's head. For those not fortunate enough to experience thickened milk, it feels like snot. When you add Cheerio's to the mix, it smells like stale pee. So now my upstairs smells like crap and the kitchen and Hailey smell like stale pee. Fawesome!

And this is why we are done having kids...

The waiting game

I talked with the Neurologist this morning. He said that the genetic tests he wants to conduct will take 3-6 months for results. Even after all that time, we still may not have our answer. In 50% of the Congenital Myasthenia cases, a genetic component isn't found. Hopefully, since we are dealing with all three kids having the same issue, that the tests will be able to confirm on a genetic level. Then the testing would be much easier for the other two.

In other waiting news, I am still waiting on the cleaning fairy. Once again I left a mess out over night and she did not come, take away the mess and leave me a crisp one dollar bill. She is officially my least favorite fairy.

About fucking time!!!!

Mom- I am sorry if you read the title of this post and are uttering my name in the mom voice while shaking your head. I will say that if things had gone differently today, the title of this post would have been either one profanity or a long string of them.

For those of you who may not know why the first blog entry's title would have been a long sting of profanities had the day been different, let me recap the last few years:


May 2009- Josie turns one. Shortly after her 1st birthday she lands herself in the ER with bilateral pneumonia. Given meds and a clean bill of health a week later.

June 2009- Josie's back in the ER with another round of bilateral pneumonia. A referral to a pulmonologist is submitted.

July 2009- Cystic Fibrosis is ruled out. Swallow study is ordered. Josie failed the swallow study and diagnosed with Dysphagia.

October 2009- Josie taken to hospital by ambulance because of bilateral pneumonia. 

December 2009- Follow up swallow study shows more micro-aspirations, thicker liquids ordered.

January 2010- At the request of the speech pathologist, an appointment to watch Josie eat is set up. During the meeting the speech pathologist notices that Hailey is showing signs of aspiration and recommends swallow study.

February 2010- Teague is born. At the 2 week and 4 week check up, wet breathing was discussed. Ped said it was normal.


April 2010- Hailey has first swallow study and fails and diagnosed with Dysphagia.

May 2010- It is no longer called Dysphagia in our home, it is now jokingly called sucking at swallowing. 

June 2010- Teague has his first swallow study and passes with a 20% penetration rate. He was 1 swallow away from failing. Josie has another swallow study and is no longer allowed to drink from a normal cup.

September 2010- Meet with ENT.  Suggests laryngeal cleft surgery.

October 2010- Josie undergoes plumping of the back of her throat.

November 2010- Swallow studies finds the plumping is not effective.

December 2010- Josie begins struggling with foods. Heavily modified diet put in place.

February 2011- Fight like hell to get Teague another swallow study.

March 2011- Ped returns after 9 months of being away. His first appointment back in the office is spent reading our file with his second appointment being me saying I want a referral to 4 very specific doctors. After a brief discussion about how it would be easier on both of us if he gives us all four at once, we get all of our referrals. Let the appointment making party begin!

April 2011- Teague fails swallow study with a 46% penetration rate. Josie fails swallow study with fibrous foods (no intact meats). Josie meets with new Pulmonolgist and ENT which suggest repeat laryngeal cleft surgery along with lung irrigation.

May 2011- Josie undergoes Laryngeal cleft surgery- very minor cleft is found. Meet with geneticist. No ideas, but asked to come back in 6 months.

July 2011- Josie has repeat swallow study. She is allowed on thinner liquids, but still struggling with foods. Meet with Neurology. EMG and nerve conduction study recommended.

August 2011- Teague falls while carrying a ceramic mug and cuts open his hand. (The importance of this will make more sense in a minute)

I left out most ER trips and illnesses as it is ridiculously late right now and you can only write "bilateral pneumonia" so many times before the letters and words start to look odd.

Which brings us to current day and I am sure you can see where the "About Fucking Time!!!!" comes into play. Today Josie had her EMG/nerve conduction study done. I have to say, she is a trooper and handles everything like a champ. The tests came back abnormal. Which is somewhat a blessing. The test shows that her muscles get fatigued after a minute of stimulation similar to exercise to the point where they fail to work. This is most likely the reason that the kids are always falling, not just because they are clumsy. If you knew their parents, you would not be surprised if they were just clumsy. My dad called me Fall-Down-A-Lot Bear as a child and the hubby has a nice scar on his head from managing to hit it on some doohickey on the sub. Anyway, back to today. This muscle fatigability can also cause a person to suck at swallowing. We still don't have a definite diagnosis, but we are getting closer. I should hear back from the Neurologist tomorrow (which is rapidly becoming today) and we will go over what comes next. I am hoping this next phase goes much more quickly and smoothly than the beginning phase.