gwacemom's Momaroo

Dear family,

Fri, 19 Mar 2010 18:14:23 GMT

I just spent four hours cleaning this house. I will not bore you with the details, but I would like to clarify just a few things.

Life as we know it has taken a very sudden change. We will get through this together as we always do, but I am going to need your help. When I ask you to help clean the living room I am not asking because I am too lazy to clean it myself. I am asking because I just spent all day at the hospital with Emily. The stress of that is enough to make me want to climb the tower with a gun. Coming home to a disaster area just makes me want to turn the gun on myself.

Yes, I know that you are all going to chime in with, "but we did clean the living room". You see, your version of clean and mine are not only not on the same page, I am unsure if it is in the same language.

When I went to pick something up off the floor last night I took a quick glimpse under the couch. Here is the problem, under the couch does not mean clean. Under the couch means that today I got to get down on my hands and knees with my back one twitch away from going out again to clean the mess. I totally get that there are times one or two items just end up there on their own. Someone kicked it, Em stuck it under there, etc. However, her entire container of playfood did not just magically appear under the couch. In fact, the container is sitting empty in her kitchen and I was curious as to where the food went. Now I know.

I also spent a great deal of time in my bedroom. You remember that room? Yes, the one that I only enter when it is time to go to bed. It is for that reason that I am beyond shocked that it took me two hours to clean it. I do not recall playing with play doh last night, so I am unclear where all the dried stuff came from. From this day forward, your rights to play in my room have been revoked. Yes, I realize that the faster computer sits in my bedroom, but the almost as fast one sits in the living room. I guess you go back to taking turns.

Please guys, I am on the cusp of losing it and I could really use your help. I don't ask you to mop the floors or dust the furniture. I just ask that when you are asked to complete a task that you do so without bitching and do so correctly. We as a family have a lot on our plate right now and instead of fighting amongst ourselves, it would really help me if we could just come together.

If it is out of place, pick it up. If you dirty it, wash it. If you got it for Caleb make sure Caleb puts it away. If you see me falling asleep at the table, guide me to my room. When I am talking to the doctors, work it out between yourselves. Am I asking too much?

Wake up, Doc!

Thu, 18 Mar 2010 14:31:46 GMT

First things first; Emily's surgery went well. The blockage was removed (seems it was bigger than the one three weeks ago) and she is home and happy. The doctor has her on a host of different meds to see if we can prevent this from happening yet again, but I am not completely convinced it will work. He seems to forget that I am dealing with a three year old that doesn't like medication. Oh well, I am more than willing to try.

It was while we were at the hospital that I had one of those moments that just make you want to stop and say "Are you fucking serious?"

I have grown quite accustomed to those in the medical field looking at Emily as though she were a specimen under a microscope. I am not sure why this is, you would think that they worked with children with Down syndrome often, but I have come to believe that isn't the case. Yesterday it was the anesthesiologist. They have one that actually works with Emily during surgery and one that comes around prior and gathers all the necessary information.

Because I was going this one alone, I had to remain very lighthearted so that I could keep Emily happy. Last time Matt was able to be there so we traded off when they needed information. So, the doctor comes over and begins asking me all the routine questions. I knew I was in trouble when she asked me what Em was there for and I answered rather blase that she was in for a bowel obstruction. The look on her face should have tipped me off, but I guess I wasn't paying close enough attention.

"She is here for a BOWEL OBSTRUCTION?"

"Yes, yes she is."

"She sure seems happy for having a bowel obstruction."

This is where I explain that this is something we have been dealing with most of her life and for Emily, this is what is normal. She doesn't really know any different, so she has adjusted to this and does just fine most days.

We then move on to her rather long medical history. Yes, she had her heart defect corrected at eight months. Yes, she had a pull through done at two weeks. Yes, she spent 25 days in the NICU. Yes, she spent a week in the hospital at seven months with group b strep, etc. Again, I say all of this while playing with Emily. It is a part of her past and not something that I feel the need to get all solemn about. She is fine but for her bowel issue.

The doctor watches us play with this amazed look in her eyes. She ask me if she attends school. I tell her that we have opted to not to school, but that her teacher has been working with her in our home since she was three months old. I also tell her that she has seven siblings and that they are her best teachers at this point.

She makes the comment that Emily seems so "high functioning" which is really just code word for "normal". I honestly don't know what she expected, but no, Emily is not a drooling non verbal lump curled up in the corner. As a matter of fact, I have yet to meet a child with Down syndrome that fits that description and if Emily behaving like any other three year old is not what she expected, then perhaps she should change her expectations.

The questions finally end and she begins to leave. It is here that it got really amusing.

"So, I guess you are a huge fan of Sarah Palin."

I seriously almost groaned. Had I not been so stressed about Em going into surgery I swear I would have said the first thing that popped into my head which was; "Well of course I am. Just like every gay man in the world is a fan of show tunes. Stereotype much?"

What I actually said was; "I can understand why you would make that assumption, but in all honesty, no I am not a big fan of hers. In reality I often wish that she would sit down and shut up. In my opinion she does not speak for the majority of us within the Down syndrome community. You see, in our world Emily is just Emily. Yes, I advocate for awareness and I realize that Down syndrome will always be a part of Emily. However, I feel that Sarah uses her son for her own political gain. If I got offended over every stupid thing someone said to me (coughlikeyoucough) I would spend my life being offended. I choose to take that time and educate the person on what life is really like with a child with Down syndrome instead of demanding that you treat my child with kid gloves."

I don't think she quite knew how to respond, but I do hope that in the future she think before she makes such a blanket statement. I wasn't offended, but I do wish that those in the medical community start to realize that not all children that are "different" need to be treated as such. You can speak clearly to Emily in a normal voice and she completely understands. We spent the morning playing the "oops" game and this woman was shocked??

Wake up, Doc. Her name is Emily and she is amazing. She just happens to have Down syndrome.

A new outlook

Wed, 17 Mar 2010 01:46:49 GMT

Today I discovered that Emily was going to have to undergo yet another surgery. I didn't handle it well and for that I am ashamed.

Yes, we are facing a difficult time at the moment, but in the grand scheme of life; we are one of the lucky ones. Emily's heart is repaired and working wonderfully. She is showing few signs of being delayed. She did not have the laundry list of medical issues that some children with Down syndrome are dealt.

I have come to know many families of children with CHD and Down syndrome these last three years. I have cried when their child lost their battle with leukemia. I have waited anxiously to hear if another was going to survive her fourth heart surgery before her first birthday. I have rejoiced when their children finally came home only to cry when they were taken back to the hospital days later in cardiac arrest.

I found out today that Emily might always have this issue and that we might always have to take steps to help her with it. I cried because I felt it was unfair. I then looked around and realized; my daughter is sitting here smiling at me. She was never forced to spend almost a year in the hospital. She has never undergone chemo. I have never felt the fear that I might lose her.

We are blessed and somewhere along the way today I forgot that. I promise to never forget that again.

Emily is healthy and this small problem is not going to keep us down.

Round Two

Tue, 16 Mar 2010 18:31:14 GMT

This one is a quickie. I am still trying to figure out my feelings.

Emily went back to the surgeon today. She had her surgery just three weeks ago. She is again impacted. All the things he told me to do are simply not working. We head back tomorrow for yet another surgery. This time we are doing a biopsy as well.

I just want my baby well. Out for at least a few days. I have got to get myself under control so that I can be the strength that she needs. Prayers are appreciated as always.

Dude, where's the baby?

Mon, 15 Mar 2010 16:30:59 GMT

My Vegas trip got a seriously delayed start. Poor Emily had yet another episode with her tummy and it was the worst one yet. I had hoped that the surgery would correct the problem, but I feel like we are putting a bandaid on an amputated limb at this point. We go back to the surgeon tomorrow and are not leaving until we have a long term solution.

First we had the issue with the rental car. The plan was to pick it up late Thursday so that I could leave as soon as the kids got out of school. That would have put me in Vegas around 8, just a few hours after April and Sarah landed. Due to the fact that we had just returned a rental car on Sunday, my credit card company thought it would be nice to flag my account as possible fraud. I am glad they are on top of things, but I just wish they had called me first. Neither of our cards would work because not only did the credit card company flag us, so did the rental place. We were screwed on both ends. Yet again, NEVER rent a car twice in one week unless you want a big old headache.

I planned on just taking our car and leaving Matt home with his four seater. He assured me they would be fine and if anything major happened, he had Jake here to watch the little ones while he handled it. Emily's tummy issue put a whole new spin on things and I knew I wouldn't be leaving at 3 after all. I had had the fraud hold released on the credit card that morning, so since I was home for the foreseeable future, I decided to rent another car. The plan was to pick it up around 7, come home and sleep for a few hours and then head out so I would be in Vegas before they woke up. That is what I did and headed out just before midnight. This is where it apparently got fun, but I didn't hear about it until last night.

Everyone was sleeping when I left, so I quietly loaded up and hit the road. I made it to Vegas just shortly before five and Sarah and April woke up to welcome me. I had originally thought Sarah would just let me in, I would crawl into bed with April, and we would all get a few more hours sleep. That so didn't happen. April heard Sarah's phone ringing, so she was awake and waiting for us when we got back up to the room. We didn't sleep again until around 11 that night. I haven't laughed so much in years.

What happens in Vegas...

Mon, 15 Mar 2010 15:31:13 GMT

Is all Sarah and April's fault.

I am home and a bit sad. The weekend was beyond anything I would have ever imagined and I laughed so much that I still hurt. I am happy to be with the babies though, I missed them like mad.

More indepth blog later. Em is demanding my attention and I am off to shower her and Caleb with kisses.

So outta here!!

Fri, 12 Mar 2010 18:20:18 GMT

After much drama (does it never end?) I am packed and ready to head out. I pick up the last child from school at 2 and my car is loaded and ready for Vegas.

A little FYI for those of you that might some day face this problem; it seems renting a car twice within a one week period causes your credit card company to raise its eyebrows and worry about fraud. I learned this little tidbit last night when I attempted to pick up my rental car and my credit card with way more available credit than was needed refused to work. Sadly, my company does not have a 24 hour customer service number that actually has people working. I could get to the automated system which just kept telling me that I had plenty of money, but nothing about why it wouldn't allow me to utilize it. Ugh.

Because I was renting the car in my name, I had to use this stupid card. It is the only one that actually matches my drivers license. The rest are in my married name and after what April went through at the DMV, I am in no hurry to go change that just yet. This morning when I called to find out WTF, I was informed they had tagged it as possible fraud and were just waiting on me to call them. Well isn't that sweet. Oh well, my car is fine and Matt is cool with just having his for the weekend, so I head to Vegas in my big ole Expedition. I spent the morning making sure everything was good to go and now I am just pacing until I can get out of here.

So, that is my tip for the day; don't rent a car twice in a one week period. Now, I am off to Vegas to enjoy the weekend with my two best friends. You guys have fun; I know we will!!

An ending

Thu, 11 Mar 2010 19:20:29 GMT

I knew this day would come. I was just not ready for it. Today was Emily's exit interview with Mrs. M, her teacher. Mrs. M has been with Emily since she was three months old. I had known since that day that when Emily turned three, she would age out of Mrs. M's program.

I have watched Emily thrive under Mrs. M and seeing her today for the final time feels as though we have lost a dear friend. She has assured us that she will always be available for us if we ever need her, but it is still a door that has closed. I feel like crying.

We have been so beyond blessed to have some of the most amazing people working with Emily. Today we also lost our beloved social worker. She too works only with the children until they reach the age of three. These two women have been my advocates through the maze of caring for a child with special needs. One phone call to either would lead me down the right path to whatever service I needed. I have a new social worker, but I still feel the loss of R deeply.

As I have stated before, we have decided to not continue with school for Emily. Mrs. M is still encouraging me to consider homeschooling Emily when the time comes for her to attend kindergarten. It is something I am very seriously considering. I am going to call and see about speech therapy as I think this is something that Em could benefit from, but that is about all. She is constantly learning under her brothers and sisters and everyone feels that home remains the best place for her to learn.

Mrs. M, you are an amazing woman and I am so thankful that you were Emily's first instructor. Your students are blessed to have someone has caring as you in their lives. We will never forget you and thank you for all you have done.

The countdown begins

Wed, 10 Mar 2010 23:56:59 GMT

I am only half ass here right now, so this might be all over the place. I am just not feeling it right now.

Two more days, technically less than forty eight hours, until I leave for Vegas to spend the weekend with two of the best friends a girl could ever have. I.Can't.Wait.

In the spirit of "we are going to kill you first" the kids have been driving me batty. I think that is why I am not feeling the blog today. Too much stress and not enough tequila. I received no less than two calls from teachers today and neither was regarding a child I would have suspected. Oh the fun.

I need this trip to Vegas and this time with Sarah and April like you simply can't imagine. A weekend with no kids, no husbands, and no bs. We plan on laughing our way through Vegas and just enjoying the time together. We plan on taking tons of pictures (even a few of April naked after we ply her with tequila), so hopefully I will come home refreshed and ready for some fun blogs.

That is all from my world. I gave up sugar again and am now trying to talk myself out of heading to the store for chocolate cake. Have a good one.

Doctor update

Tue, 09 Mar 2010 19:03:02 GMT

I was going to call it "Naked Girls" but figured you guys would be disappointed when pictures of April didn't appear. Next week will be the time for those, no worries.

Anyway, we headed over for Em's check up and for Whitney to get some shots. She is the biggest baby when it comes to shots. She needed four, but conned them into just giving her two. I would rather just get it over with, but she was seriously freaking out so I let her do it her way.

We waited forever for Emily to get called back and she was making me crazy. Something about that doctors waiting room brings out the beast in her.

We got called back finally and Emily is weighing in at a whopping 24 pounds. She is 33 inches tall as well. On her chart she falls within the fiftieth percentile on both height and weight. We do not use a typical growth chart, children with Down syndrome have their very own because their growth is so much different. I think on a typical chart she is somewhere in the fifth to tenth percentile which is why I like her chart so much more.

She had to get two shots today as well and she was far less a baby than Whitney. She could teach her sister a thing or two about how to handle things. Dr. P is going to call the tummy guy today and let him know that she is still concerned about his treatment ideas. It really isn't working for us and both of us are frustrated at his lack of concern. He is focusing on "right now" and we are thinking "long term solution".

As it stands, Em is doing much better with the blockage removed, BUT I am still having to (in the interest of not grossing anyone out too much) help her along, if you will. She is three now and we have to start thinking about potty training and such and that is next to impossible when she is unable to handle her business without stimulants. Thank goodness for Dr. P because she won't let this rest until he does something to help her long term.

Overall, Beauty Queen is doing wonderfully. Dr. P is having as much difficulty as I am in realizing she is really three. She has been there with us since day one and I feel so blessed to have such an amazing doctor looking after my angel.

I am off to pretend like I am cleaning. Vegas is in four days and I want to at least have the house semi clean before I leave.