So, it has been a while....

and I am not back tracking to January. I have thought about blogging about once a week, but I just cannot drag myself back here. Today. I needed to. It isn't out of want, but I guess that is coming as I type.
I am very hormonal today and I don't quite know why. I suppose it has been building over the last few weeks. Alyssa got her MMR vax on March 7th and wound up reacting to it while we were away on vacation. Her skin was probably the worst it has ever been. She is such a trooper. I know it hurts when it flares up like that, but she still lets a bit of her sunshine pour when she can.
At any rate as it starts to heal it still looks like not so much fun, and we are in Vegas... it is hot. So, I have had her in cute tops and shorts, because the reality is I don't see her skin unless I am looking at it to analyze it for the day. It is about a 1 minute ritual I do in the morning to make sure that she is lathered up and good to go for the day. At any rate, strangers have been... off color? In recent days. You know the lady in the line at the grocery store 'What is wrong with her skin?' I actually had a fabulous talk with the nurse at her opthamologist's office yesterday about tone playing a major influence. I don't mind talking about my baby. If anything I love it. She is the light of our lives. I do mind the grimacing, the nose turned, the auto-pity that is released. I have responses now. After nearly 14 months of her life, I now have automated responses for snarky people I meet on the street. "What's wrong with her skin?" "not to be rude, but it is not your business"
Now, don't think I shoot everyone down. I don't! I really do not mind informing people. I know that it is not a common thing, it is not something that people see every day, and it is something people are going to ask about. I am totally OK with that. The rare jem at a store who comes up and is sweet as can be and then throws in a "oh honey, do you have a boo boo?" I can handle, and I can handle well!
What I can't take is the pity. The 'oh that poor thing' or 'oh she goes through so much' OF COURSE SHE DOES! It is who she is. She was born for it! She does it without knowing any different. She does it with such poise, such determination, and such grace. She is amazing.
It is a weird situation for me I suppose. It is just our life. I said something to Neil today about someone being sad about the way her abdomen appeared. He said "Why because she is thin?" ... did I mention I love him. A LOT. It just showed me that he doesn't see it either. We were both rejoicing this afternoon about how fabulous her skin looked compared to two weeks ago. She is in no pain, back to loving life, and just being a bucket of smiles.
What worries me is not her. It is the world around her. It is the fact that we, as human beings, feel the need to scrutinize and judge everyone we meet. If she didn't have bad skin, people would find something. For me in school...it was my weight and my glasses. My mom used to say, if you were skinny as a rail with perfect sight...the kids would search for something. It is true.
I don't know what I am getting at really. I am just having a rough day. It is hard when you see someone as so perfect, so genuine, so wonderful, and then someone else looks at her and feels sad. I try not to take things personal. I know they aren't. However, sometimes it is a challenge. Sometimes I wish Alyssa could be *typical* and slip under the radar, but you know what...that is NEVER going to happen... she is way to amazing to slip under the radar. So, I will grow each day with her, I will grow a thicker skin, and in the end we will both be stronger for knowing each other and we will both love each other for exactly who we are ... I hope :)

What's the deal?

Alright. I need help. Or something? Ugh I don't know. So yesterday started out WONDERFULLY. I mean really. Alyssa slept from decent, we got up, got her dressed, fed her, played on the ground. We worked really hard on the ground. It always amazes me when I stop and think of all the things that if Alyssa wasn't Alyssa I would take so many things for granted. Really. As I lay on the ground coercing her into alternating hands, trying to get her to roll towards me, rejoicing when she sat unassisted for a bit it sorta hit me. Not everyone has to do this. Not everyone looks at their child with a thought of 'oh gosh if she could just...' I mean really. There are moms who are completely clueless of milestones. I wonder what that is like. I wonder what it is like to not see a doctor but once a year... and only see one doctor. I wonder what it is like to not have to pay attention to what you child is doing with their coordination. I wonder what it is like to not think for one minute that your baby may be doing something the 'wrong' way. However, I know that we are in this for a reason. I know that. I truly can't imagine it being another way. I mean I guess if I try really hard, but I can't imagine Alyssa being someone elses baby.
The beauty of all the wondering... it causes rejoice at things that people with 'typical' children tend to take for granted. Yesterday I handed Alyssa a block and she reached up with her other hand and brought it to her mouth. A HUGE accomplishment. I rejoiced in YAY and got teary...causing her to drop it and replace it with a huge grin. Oh that grin... it really is the most beautiful smile on the planet. When Alyssa smiles she doesn't just smile with her mouth. It is a full body emotion. Her eyes squint, her head tilts a little, her arms relax, and usually her legs jog a bit. She smiles with her whole body and soul.
Ok so the day progressed well, even including a wonderful dinner with the in-laws. Then, we came home with the dogs in tow. They have been with the in-laws since new year's day. I got home and I was stressed. Why? They weren't doing anything. It is just a natural... what are they doing? Then they bark...oh the barking makes me want to climb the walls. But why?! They did not bug me before I had a baby.
Today we made the drive to my mom's and went to church. Church was...well amazing. I cried. A LOT. I cried like no one was watching, and who knows maybe no one was. It was a matter of a vision that one lady had to write all of our problems on a scroll and send them away. To give them to the Lord and let him have them. I prayed for so many things that have been weighing on my mind, and I cried. I just prayed for strength and security. Spiritual, Physical, and Financial strength and security. I gave him the worry of Alyssa. I gave it to him. I am done...not that I ever really started. No, that's a lie. I started last night. See the neuro had mentioned a bit about CP which got me reading. DUMB! I do not read about things that affect Alyssa without researching the research first. Knowing what I am walking in to. I didn't do that last night. Instead I read about life expectancies of CP patients...who does that?! She will live as long as she is supposed to, and we will fight to give her the most blissful time we can. I can't do it without Him though. Really. So, I gave it to him. I want 2008 to be a better year. Years like 2007 are just ... flaming turds with silver linings remember.
I want 2008 to be a year I look back on and go, "WOW! We did it!" Wouldn't that be awesome. Either way I know we will make it. We will stick together as a family, but gosh I sure hope He took it to heart and takes what I asked him to. It would make it a lot easier to make it through. Maybe I should have asked Him to find the dogs a good home or increase my patience for them...ah well maybe next year ...

What a swell day!

Really, thus far 2008 could not have gone a touch better. Ok so maybe a touch, but really it has been so smooth. Hopefully I did not just jinx it. LOL.
So the last 3 days in review. Wednesday I met with my friend Michelle and another girl from DSD (Alisha). We chatted about all things in life that you can cram into a 5 hour period, and then returned to our respective houses. Wednesday night was nice and relaxing and once again Alyssa so kindly slept through the night.
Thursday we got up and headed to the neurologist. Let me just say that initially her neurologist was the one doctor on her team that I did NOT care fore. We stuck with him, because we knew he was the best in town. However, oh the bedside manner :sigh:. Each visit gets a bit easier. I think he is realizing I have a brain and I understand what he is saying. We actually had a delightful talk about Alyssa and all directions we are headed. He very rarely picks up on her personality. Well, since we chatted for a while on Thursday he made a comment about her being so perceptive. She totally is...almost to a fault. I mean the girl will not let me go farther than 2 feet away if she is not feeling well. He feels that early intervention will really help her to relax her muscles and begin to improve coordination. I can't help but agree. For the last two weeks I have been encouraging her to use her left arm more, and I can honestly say already that she is using it far more often. After we left the neuro we swung by UNLV where I discovered I only need 12 more credits to get my degree! Are you kidding!! that is only 4 classes! Of course only 3 of them are offered but what are you going to do? Worst case I graduate in December :) . We then headed over to Joleen's for a bit of lunch/drinking to celebrate. We had a great time Alyssa napped and let us have some adult time. Talk about divine lunch though. We got all the fixings for turkey sandwiches and a wonderful green salad. Overall, it was AWESOME!!
Today, ahhh today. It was perhaps the most blissful end to a week ever. Alyssa slept from 10-7 and then woke up and ate. We snuggled back to sleep until about 9. Got up and she ate again, we played for a bit, and back down at 1130. I cleaned before Neil got home and planned the menu for the week. Neil got home and we chatted for a bit, he napped, I sewed, and then Alyssa woke up. We headed out to the children's orchard for some socks for Alyssa, grocery shopping, and finally the bank. When we came home he fed Alyssa as I made dinner. She is getting SOOO good at eating. So much more is actually going in her system and she has stopped screaming at the sight of the spoon. Then the three of us relaxed and watched a movie, and I cut out a bunch of squares to sew more cubes. She crashed at about 930. Overall, it was such a pleasant day of just 'life' you know the way you expect every day to go. No one cried in pain, anger, or retaliation. We all just lived. It was wonderful. There were kisses and hugs and smiles and the day just ended on such a happy note. It was the most swell day I can remember in a long time. Really. It is soo wonderful to me to see my family happy and to know that Alyssa's skin is not bothering her. It is truly an awesome day when you know that your family is in a great place emotionally, physically, and spiritually :)

OK. I am the world's worst blogger...really. However, it is a new year and I am determined to do better. I really want to work on checking in at least biweekly ... hopefully more but really that would be an achievement. 2007 was a hectic year that is now being delightfully referred to as a flaming turd with a silver lining. As I stopped to look back today I did my fair share of crying. It really was a roller coaster of a year.
I would have never imagined how much of an advocate I would become last year. I mean never. I know stuff now that I wish I did not, but on the other hand I am grateful I do know. I learned a lot watching my daughter grow. In ways it was almost forced. I mean what were my options? Ask her doctors to research her disorder extensively? How is that fair? I mean it isn't an entirely common disorder and it can go sooo many ways... if I had left it to them odds are she would still be laying in an isolette hooked to tubes. Luckily for all of us we left it to the Lord instead. Now this is not to say she doesn't have awesome doctors. We have been so blessed by those that we have come to know, but it is nice to know that we are in full disclosure of what is going on with Alyssa.
Looking back I suppose the two things about 2007 that stand out the most are My daughter's birth and my faith in G*d coming to be...and ironically the two could not be more interweaved. Nothing could have brought me to him the way she did. Nothing. As I stopped to think today that we are 41 days away from her first birthday I realized that she has done so much in so little time. She has taught me so much and she hasn't even learned to talk. She is honestly the strongest person I know. Do you know how hard that is to admit? That the strongest person you know weighs less than 15 pounds? She really is though. I could have never pulled through what she does and she does it with all of His grace. I love that she is just so incredibly "Alyssa" every step of the way. She has never done one thing that 'they' say she will...and I adore her for it.
I am curious as to what the second year has to bring, but apprehensive as well. I am going into it with the theory that Alyssa will do everything she is supposed to do. Now, take that for what it is. She may not do everything a 'typical' child will do, but I feel very strongly that we will give her every outlet available to achieve everything she is supposed to.
I could have never predicted how last year would go. So, I am not even going to attempt to dictate how 2008 will go. I hope it is a bit easier on us, but I know it will be just as hard as it is supposed to be... as difficult as that is to think about. Overall, I am looking forward to it and trying not to look back too much.