To the Moon!

I had a nice little thought on my way home from school today:

    It could seem as though the decisions I've made in my life seem backwards and unfortunate. Yes, I can see how getting pregnant at 21 isn't a good idea for most people. No, I am not married to the father of my child. No, I do not own my own house and I do not have a degree or career yet. Jeez! Where's the good part?! It could be depressing...but it's most certainly not.
    The second happiest moment in my life was when I realized that I could live my life exactly the way that I wanted to; in a way that went against every rule I was taught for living the American Dream. I get to write a story like no one I've ever known! It's liberating, scary, satisfying, fills me with curiosity and uncertainty. I love learning and I love people so I've always wanted to live a life that revolved around those two things. I always thought that planning the rest of your life out while you were in your 20's was insanely boring, useless, SO not what I wanted for myself. Doing things backwards, in a sense, made the most sense to me. I hear a lot of people say that having a baby "before you're ready" means you have to throw your dreams out the window, which is wholly untrue. It makes things harder in some ways, but it makes things easier in almost every other way because love can help you accomplish anything and everything. I got what could be considered an end result in the beginning of my life, so I see my end result as limitless. What better environment to help you plan out the rest of your life, than to be surrounded by people who want to teach, learn, love, and have fun with you? I've got my family, now I can concentrate on making a life that fits us best.


    Speaking of family, PP starts her new Occupational and Speech therapy next week! I am so excited! Therapy starts on her Spring Break from the school system which is nice because we can introduce her to this new stuff without overwhelming her. It will be really different, but I am looking forward to the new techniques and resources we will get from her new therapists.
    PP has recovered from a UTI this past week, the darn bilateral reflux in her ureters flared up. She had a bad fever, but no cold or flu-like symptoms which sent up a red flag for me. She can't talk, but when she would try to void her bladder she would scream like a banshee and it doesn't take a rocket scientist to put two-and-two together. A 3AM trip to the ER went very quickly and we got a substantial amount of antibiotics for her. We endured about 4 consecutive nights of being up ALL night, with Chris and myself taking turns sleeping on the couch and watching a movie in our bed with PP. The three of us trying to sleep in the same bed together was nearly impossible, and probably pretty funny if I wasn't blinded by sleep deprivation. I forget which day it was, probably day 3 of no sleep, I was trying to play with PP. I say "trying" because even though I was sitting up, talking to her, and moving toys in my hands I was falling asleep. Like, really, falling asleep. It was the weirdest feeling! Sheesh! I survived with the help of large iced caramel macchiatos from Dunn Bros, which I would chug in less than 5 minutes. I'm so glad it's over and PP is all better now!
    Today, we went to Children's Hospital to have blood drawn. The three of us each had 10mL of blood taken so it could be tested for Weavers by those eager beaver scientists up in Canada! Chris went first, then me, then PP. This was by far the best blood draw PP has ever done! She cried and tried to pull her arm away, but I know she can pack a punch when pitted against a phlebotomist. Thankfully, this wasn't the case today! I think that watching me and Chris do it first helped her a lot. She recovered quickly, and within a few minutes you wouldn't have known that the phlebotomist had to dig in her arm to find a vein! I don't know when the test results will come back, but I won't hold my breath. Genetic testing is very complicated. I can imagine that testing for a very obscure and rare genetic disorder would take longer than a normal test.

    PP is such a character! She loves going outside. She stands by the door and yanks on my purse or her jacket, then bangs on the door when she wants to go out. She loves to take rides in her Radio Flyer, playing in her play house and sliding down the little slide. She loves to walk near the street too, so showing her not to walk where the cars are driving is something I have been trying to teach her. It usually starts with me trying to block her way and explain why it's bad to walk into the middle of a busy street, trying to redirect her, then she ends up throwing a fit and we have to go into the house so she can throw herself around on the couch or in her crib where it's safe to do so. She also hates dogs that bark. They are very scary and send her into a frenzy that is only cured by a hug, walking and singing. She likes to use her reverse four-wheeled walker in the yard. It helps her stay stable over the uneven surface, and gives her more independence. She can kick beach balls and chase Momma all over (almost). PP also likes to lay on her back on the ground in search for airplanes and puffy clouds to point at, which is absolutely adorable.
    PP loves to give hugs and kisses, but mostly to Momma and her sock monkeys. She's shy to give kisses to Papa Chris, I think it's because of his whiskers! However, she does giggle A LOT when Papa gives her tickle-ly whisker smooches! She loves to give hugs, cuddle and watch her Papa edit his photos. We tried to use the FaceTime application on our phones the other day which went terribly! She looked horrified; crying and screaming when she saw Chris' face on the phone! It was funny to me, but obviously not to her. She gets upset when he's not around, and she would prefer it if both of us stayed in the same room at all times and gave her our undivided attention. She's two, ya know! Very bossy!
    PP has started to sign two signs together, like "more" and what I am beginning to pin down as "eat" or "drink". She is making up her own signs, but she's lucky that I have developed the priceless skill of knowing how to dissect non-verbal language from years of working with Alzheimer's patients and people with disabilities. I never imagined how useful those skills would become!
    PP loves to jump on the bed with Momma, and she loves to play dress up! She wears my shirts, hats, shoes and jewelry. She also puts clothes on me! The other day I was wearing two blankets on my head, a hat, sunglasses, and a stacking toy in my mouth which she thought was hilarious. She has an odd fashion sense that is totally PP. She is most definitely a unique girly girl!
   
Well, time for bed.
Sweet dreams and pleasant thoughts
XoX

Oh happy day!

It's days like today that put a hop in my stride. Accomplishing things that have been weighing down my head for a long time is so rewarding!

I finally got all of PP's medical assistance paperwork put together. HALLELUJAH!!! This involved coordinating the efforts of my school and my ex-employer. I was worried about how it would all work out because my ex-employer seems flighty when it comes to things that are actually important. I finally got their last bit of paperwork today, so I don't think I'll have to deal with them until tax season next year! Thankfully, the school was very prompt in returning their completed paperwork!

This problem came about in the first place because I misunderstood the due date for her initial 6-month income review paper work, and unfortunately it has set us back about a month. I only missed the due date by a few days! PP can still get services when she needs them because she's disabled, but to avoid having to deal with re-submitting insurance claims (which are a HUGE pain in the ass) it is most favorable to have paperwork done before their due dates. The county is quick to take away benefits, if they have any excuse to not cover PP they will jump at the chance! It is very expensive to take care of a special needs child and the county has a whole flock of them.

I am super happy that I got everything together, and that my social worker even went into work on her day off to take care of the rest of the paper work. I talk to her on almost a daily basis. She is so awesome! She is always willing to go that extra mile to help us out, and if she didn't we would be in hot water! Stephanie is my direct link to the county and she knows all the right things to do to get things pushed through as quickly as possible. It's people like her that I wish to imitate when I become a public health nurse! Hard workers are priceless!

Well, speaking of hard work, I gotta go do some American Literature discussion posts!

Peace out!
XoX

Just say NO to superfluous GeeGaws!

I feel like I need to address something that I've been trying to validate in my head for a while now:
I never answer my phone.

I was inspired to come clean about my justifiable detest for certain 'normal' situations because of an article I read today. You should read it too!
7 Things You Don't Know About a Special Needs Parent

Sadly, yes, I ignore most personal phone calls on a regular basis. Yes, I might say I will call you back and I never do. This is a tricky situation for me to explain, so I will try to do it in such a way that hopefully won't hurt anyones feelings. The people who try to contact me, and keep trying to contact me despite our lack of phone-conversations, are the ones who I care about most. I need to make that loud and clear!

The biggest reason that I don't like talking on the phone is that I simply don't have the time. If I have time to talk on the phone, I can definitely be doing something more productive. Usually, I need to dedicate my phone time to completing a lengthy, never ending list of phone calls to teachers, thearpists, doctors, social workers, and insurance companies. If I don't feel like making calls, I always have paper work to fill out, homework, or a neglected chore that needs to be done. Also, PP doesn't tolerate me talking on the phone very well. Whenever I decide to go out on a limb and answer a phone call (or dare MAKE a phone call) she will hit me, whine, and grab for the phone. That makes for a very short phone conversation because she either gets so worked up that I need to end it, or she finally gets her little fingers close enough to end the call. It's frustrating for everyone so I would just rather avoid that situation.

Second, I do care about what is going on in other people's lives, to an extent. This may sound mean, and I truly don't mean to be mean, I just can't think of a better way to phrase it. I have always been the kind of person to try and solve everyones problems. Chris has said before that I carry the weight of the world on my shoulders, but I honestly don't know how to live any other way because it's simply who I am. Because of PP and all the baggage that comes with her, I am at maximum capacity for trying to help others. I love hearing about positive things because I can be a very negative person. I need positive energy, really. When I get phone calls about bad things with little to no good news to counteract it, it really gets me down. I am a person who feels everything that the person confiding in me feels. I cry when you cry. I laugh when you laugh. I would rather laugh than cry, and it seems that a lot of times when people call it is to talk about things that will either make me mad or cry. I think long and hard about the problems of others even after our conversation has ended, you might call me a worry-wart. It is simply human nature to focus more on the negatives and it's very easy forget the positives. It's hard to break that cycle, I completely understand that. Breaking the negative cycle is exactly what I am trying to do though. I have come so far in my life, and have grown into a person I never thought I would be. I could very easily just sit in a heap on the floor wallowing in the unfairness of life all day long. I make every effort to be a positive person because if I were in a perpetually bad mood I would never get anything done, and that doesn't benefit anyone. Some of the things that used to really bother me do not bother me at all anymore. Being the mother of a child with special needs makes you put everything into perspective, and I find it hard to relate to other peoples problems anymore because they just don't seem that bad to me. I have been through comparitively worse things than a lot of people I know. I don't want to sound arrogant at all, I like to think of myself as down-to-earth, but I have a hard time putting in any energy to being even the tiniest bit upset over lots of things that others think are a big deal. There are times when all of my problems jump on my back at once and I have a really hard time, but I am able to see the light at the end of the tunnel in every situation. While I was pregnant, I faced the harsh reality that my baby could die if I didn't lay on my left side for a very extensive amount of time, but I get to love my baby in the earthly form every single day. I was devastated when I found out Chris had 'cancer' because I couldn't imagine trying to live my life without him, but he is still here with me. I lost a great friend, future mother in law, and PP's grandma Mary to brain cancer, but I am so grateful to have known her. I have to deal with the reality every day that my child is disabled and the only thing I can do about it is work really, really, really hard, but I am never bored. The list could go on and on. Despite all of those negative things, we manage to live a very happy, exciting, satisfying life. Honestly, I have never been happier in my entire life. I have never felt like I was doing what I was really supposed to be doing until I had PP. I blame Chris for being a constant ray of sunshine, this quality has rubbed off on me. It's nicer (and easier) than being a negative Nancy!

Finally, my biggest New Year's Resolution was to "eliminate the plaguing, superfluous GeeGaws and focus on positivity." I am making every effort to do that. Unfortunately, that means choosing not to participate in certain activities and conversations, but I don't feel like a bad person for doing that. If I can make my life easier by simply not answering the phone, you bet your ass I will do it. It's not my responsibility to care for everyone else. It is only my responsibility to take care of me, PP, and Chris because if one of us isn't happy all of our lives are miserable. It's taken me a while to realize this and it's a really tough pill to swallow because the thing that makes me the happiest is caring for and helping the people I love. I feel like I have deserted almost everyone in my life that isn't directly related to PP. On the other hand, doing this makes my life so much easier. Making anything easier is most important to my state of mental health which in turn will make PPs life better. Life is always changing so I like to think that sometime in the future I can figure out a way to re-instate my lost relationships and make them into something that will benefit everyone.

I hope that if anyone was feeling bad, or ignored, they understand my actions a little better now. Like I said before, I am not here to take care of other peoples problems because I have lots of really difficult things to deal with on my own.

I hope that everyone can be happy and comfortable with who they really are for their own sake.

Happy Pi day!
XoX

Ch-Ch-Ch-Changes!

Lots of changes for PP in the last month! First of all, the gene that marks Weavers Syndrome was discovered by scientists at the University of British Columbia! It's a gene that affects an enzyme, and that's about as far as I understand it. It's kind of complicated! The detailed report I got from PP's doctor is very extensive and is full of jargon that I could spend hours on Google trying to dissect. If you'd like to read more about it, here's an article that is easy to understand:

Weavers Syndrome

It's a really exciting time because before PP just a handful of children have been tested for it. Yeah, she's writing medical history, just another day in the life. We met with our Genetecist a couple weeks ago and at that visit they took blood to be sent to British Columbia, and I got a call saying that the scientists over there were VERY excited to see what PP has in store for them! The testing takes a long time, about 6 months, so we won't know the results for a while. 

PP visited Developmental Pediatrics yesterday! It was a 4 hour appointment, which is the longest appointment we have ever had. The doctor, McLellan, was very happy to have met PP. He has seen patients with Sotos Syndrome before, which is often associated with Weavers. Oddly enough, he said that he had never heard of Weavers before he met PP and he was very interested in the outcome of all the test results. He  mentioned the possibility of the test coming back negative, and I told him I have that sitting on the backburner in my head on a daily basis. It would be just our luck to have it come back negative! However, he seemed excited about that possibility. It's weird, I know, but if it came back negative that would mean PP has a gene that hasn't been tested for Weavers. McLellan was excited for this opportunity because he would be a part of the research in gaining even more knowledge about this incredibly rare syndrome. The Genetecist talked with me about the probability of PP's diagnosis and she is almost 100% positive that PP has Weavers because of all the other identifying factors, so if it came back negative we would just have to go back to square one and try to find a different gene marker.

The biggest change for us right now is the addition of therapy through Childrens Hospital. PP will see a Speech Therapist and an Occupational Therapist separately once a week, on top of the services she receives through the school system. We will have to go to the hospital to do her therapies, so it is a good thing I am not working anymore because if I did I would never have time to take a breath! We will be so busy; therapies 4-5 times a week, school once a week, and my school twice a week (not counting the online hours I have to put in)! Don't forget about Papa Chris, he goes to work every day and we will all have to share the car! It will be interesting to say the least. 

PP can walk up to 20-30 feet independently over a flat surface now! She has brand new orthotics that allow her more flexibility while concentrating on keeping the bones in her ankles straight and supporting her arches. Her ankle bones 'collapse' when they are not supported so it is very important for her to wear braces, but she really likes them! She is still not talking more than saying "mama" and some consonants now and then, but her sign language is improving. She signs "more" for pretty much everything from juice to cell phones. This new skill is definitely useful, but sometimes it poses more problems than it solves because she uses it for EVERYTHING. It can be very difficult to understand her needs when she can only sign "more" and grunt or scream. 

School is going good for me. Biology is a welcomed challenge, and I am thoroughly enjoying my Archaeology and American Literature classes! I quit my job because I knew that the Developmental Pediatrics appointment would give us more therapy per week. I didn't have enough time to do school work and all of the millions of other things I have to do on a daily basis while I was working, and now that I'm not I seem to be even more busy! Quitting was a sacrifice, but I think quitting was the right decision for the sake of PP. In the long run she will be so much better off because I give her all my time now. What may be good for other families is rarely well suited for us, so the fact that we need to take a very different path in our lives needs to be embraced. We really don't have any other choice but to do so if we have PP's best interests at heart. I am excited about all these changes. I am willingly forced to see things from a completely different perspective and am able to learn what it means to live a truly happy and whole life. It's all because of one person; Penelope is my hero!

Well, it's just about time to have our weekly visit from our Physical Therapist and Teacher! 

Sunshine and lollipops!

XoX