Denial

I had a realization recently that really helped me understand that I am still in denial about Brooklyn. It really shocked me. I consider myself a pretty realistic person and of course I live with the reality of how Brooklyn's deficits match up to the real world everyday, so I was suprised at myself.
Brooklyn contracted bacterial meningitis at the age of seven. She was in the middle of second grade and was keeping up with her peers in class. To understand what a feat that is you must realize it took tremendous effort from me and many intinerant teachers, and therapists to get her there. We had worked so hard to get Brooklyn caught up to her peers. When she got sick she lost EVERYTHING. She almost lost her life. Everything her brain had learned about the world had to be relearned. She couldn't even see, because her brain couldn't process visual information! She was a newborn baby.
In November 2008 Brooklyn was evaluated and was determined to be at an eighteen-month to twenty-four-month age as far as cognitive function and reasoning were concerned. At her next in-depth evaluation in February 2010, she was at a four to five-year age level. My point is that I am very aware of her ability level, and yet I was still caught off guard.
At the start of Brooklyn's IEP last week, the teacher was saying that this meeting would be in effect until our next meeting in the spring and then we would have another meeting to transition to middle school. My heart stopped. In my mind I was thinking, "MIDDLE SCHOOL??!!! What??? My daughter is still in second grade". I was shocked to realize that somewhere in my coping mechanism I had been thinking that time had just stopped so that Brooklyn could catch up. Of course I didn't consciously think this. That of course makes no sense, however, when your daughter behaves like a preschooler it is easier to accept she is only a few grades behind. The reality is that Brooklyn is in fifth grade, and yes, next year will be in big, bad, middle school. My heart hurts thinking about this. Why can't time just slow down a little for her? Why is it just racing by while she stays stagnant? I hate it.
Of course there is hope, and I have to leave this post with a positive thought. She had made progress of more than 5 years in less than 3 years time. Her seizures have significantly hindered her progress the last year, however we have reason to hope that a new diet we have just started will offer relief and possibly the chance of reducing her many medications. So far we are hopeful. Hope is the only thing that helps me get my bearings and perhaps that is just another word for denial. Whatever you want to call it, it is what helps me push forward.

Stuart's Sixteenth Birthday Party

I woke up this morning and every muscle in my body aches! Yesterday I spent the day cleaning, decorating and preparing the house for Stuart's sixteenth birthday party. Brian had to work, so I had help from the kids and Stuart's friend, Malia, to help get everything ready. We strung up all of our Christmas icicle lights randomly all over the ceiling and I used some huge plastic, black, wall covering with stars to cover my concrete floor, (all from last year). We interspersed blue lights everywhere too. The kids played ping pong, listened to music, ate pizza and nachos and had marshmellows around the bonfire. I think it was a sucess! Stuart had fun and that is all that matters.
What I am happy about is that I was able to do the whole party for under $100 dollars! That is including everything! We are on a tight budget and so I had to stick to under $100 dollars. I am so exhasted today! ( Just another reminder that I am not anywhere close to sixteen anymore!)

My Graduation!

I finally did it! It has been so hard! I have been going through the interpreter training program since 2008 and I finally finished.

Two years ago when Brooklyn was freshly out of the hospital I really needed something to bring me back to life. So I decided to go back to school, as an outlet for myself. I first night of class was the first time I left Brooklyn with Stuart since her hospital stay, but I thought it would be ok. I was late for school, got lost and had to walk in 20 minutes late. At the break I called home and eveything was ok. After class I had missed a message from Riverside County Sherriff saying they had Brooklyn! I called immediately and found out she had left home "looking for me" and lost her way. Some neighbors called the sherrif. Stuart thought she was upstairs the whole time. Needless to say, I felt like quitting the first day. I was so intimidated and didn't know anyone. I thought maybe I couldn't leave my family. But I didn't quit. The classes were very demanding and didn't really turn out to be an outlet at all, but it was good for me. I honestly think it forced me to be strong again.

For two years I have pushed forward, overcoming numerous obstacles. I had so many doubts along the way. Despite my doubts and insecurities, I got stright A's in all my classes. This last semester was by far the toughest. I had to complete 92 hours of intern interpreting hours, in addition to working and taking care of my family. It was rough, but I honestly can say the Lord was with me and thats why I was able to suceed. For some reason the Lord wants me to do this. I hope I can be of service to deaf people, but really, I just hope that I can be the best mother for Brooklyn that I can be and get her all the help I can. She is the reason for all of this. I am thankful I didn't quit, even though I was tempted so many times! I am thankful for my family's sacrifices and support! Yay! I did it!

Notice I am leaninf down? Brian was out and about in his wheelchair from his recent surgery.

Carmen and I. She's my work buddy and we helped eachother get though this last semester. We are the only ones in our class who are married with kids.

Brooklyn's room...in progress

For those of you who know me, I have always liked home decorating. However, since moving to this house over two years ago, I haven't done much. Its a combination of less time, energy and money! However I do have great plans for the future whenever I can manage all those commodities at the same time.

This past January I finally got around to painting Brooklyn's room. Wow! What a difference compared to pasty, dull and dirty white builder's paint! I love this color, and the inspiration came from the print displayed on her dresser. I also tried using a"candlelight" paint in stripes over the base coat to make it look like wallpaper. When the light hits it right it looks really cool!
I bought that chandelier at an antique store over three years ago, and finally things are looking a little more cohesive. I plan to make a padded fabric headboard and a faux canopy from the ceiling with matching drapes. Like I said, just need the time, money and energy...

Anyway, here is the progress so far!

Reflection

As we come into February I find myself being very reflective on the last two years since Brooklyn got sick. On February 27 it will have been two years. Sometimes when I look back on my life, I think that I never would have guessed I am who I am and I am where I am in my life. Life is so different from what you expect.
I finally am starting to feel more healed than not these days. The days of utter depression and crying are getting fewer and farther in between. I guess I am getting stronger. The anger has subsided now too. You know, when we found out Brooklyn was deaf we went to support groups and learned that parents go through the same stages of grief when they have a child with a disability as the stages of grief after a loved one dies. The first stage is shock, then denial, anger, etc... I don't have all of them memorized, but I finally feel I am coming out of anger stage onto acceptance. It feels good. I feel wiser and stronger because of it.
I was really angry for a long time. Not really at God, because I knew that wasn't right and felt guilty for that, and I couldn't be angry at Brooklyn, so I had a lot of undirected anger. I was angry that this had happened to my child who was already deaf. Seems so unfair.
What I have learned is that we all suffer from a notion that life is supposed to be easy and when it is not, we feel singled out, picked on. I have learned that life is not supposed to be easy, after all we are here for such a short time compared to our whole existence, and we have so much to learn. I guess I am accepting that more and more. I know it sounds depressing, but really its not. Its reassuring to know that everything has a purpose, and that God loves us and our trials are not because he doesn't love us. They are actually because He wants us to become more like Him.
I guess the Lord really wants me to be an expert at patience and long-suffering! Having a child with a disability is so challenging! It is also so rewarding. The simplest things are so cherished. I remember when Brooklyn said "I Love you" for the first time with spoken words. It was New Years Day, 2003. She was two and half. I will never forget it. Or how she used to say "Mop" when referring to me because she couldn't hear the ending "mmm" sound. I miss that so much.
But all is not lost, because now there are new things to be thankful for. She can eat!!! Yeah! She can walk, and run and ride a bike. She is toilet trained. She is here. And sometimes I need to remember what a gift that is.
Brooklyn still has seizures periodically. If she misses even one dose, she can have a three minute Grand Mal seizure. It's very frightening to see it happen and not be able to do anything about it. Well, Brian and I went to the movies last night to see "Extraordinary Measures" (good one by the way) and Stuart was supposed to give her her meds before bed. When we got home everyone was fast asleep in bed! What a great surprise! But at 1:30am Brooklyn was up and rustling around the house. She was trying to lay next to me, but was fussing and moving and playing that finally by 3:30 I was coherent enough to have the thought that she obviously did not get her meds because she was up. (One of her meds helps her brain sleep, without it she is awake all night). I got up and saw she wasn't in PJ's, dressed her, gave her meds, washed the icecream off her face from the previous day and waited for the medicine to kick in. At 4:15 I put her to bed and tried to go back to sleep. Well, I hate getting up in the middle of the night and I REALLY like my sleep, so I was kind of grouchy when the sun came up. But, you know what happened? Brooklyn came in and woke me up at around 8:00 with a PB&J sandwich on a plate for me that she had made by herself! I think she was trying to say thank you for helping her last night and she loves me. I was so touched. She really appreciates me! Wow. Those moments are so rare that I will treasure that little memory forever.
Well, sorry I am rambling. I just want anyone to know that reads this, that you are not alone if you feel that life is sometimes hard too.

Knott's Berry Farm

Hello there! Is anyone there??? I haven't posted in so long! Well we finally got a camera again so I can post some pictures.
Just before Christmas we took the kids to Knotts Berry Farm for Fire and Law appreciation day. It was great! Brian and I got in free and the kids were only $15.oo each. We met up with Brian's old partner, Brian Murphy and his wife and son.
We were a little anxious about going to an amusement park with Brooklyn. We haven't been to one since Disneyland in 2007 when she was still in her wheelchair. Its always an ordeal to get Brooklyn to walk where you want her to and to stay by us and not run away. Think a deaf two-year-old with out a stroller! We managed ok. It was soon apparent that she could not wait in lines though. We just kept doing the kid swap thing so we could spare all the poeple around us in the lines. It wasn't great, but we managed and the kids had fun. I hope we can keep practicing taking her places and at some point it will be a totally enjoyable experience. For now we at least are trying.
We kind of tricked Carson into going on our first ride, Ghostrider. He was so scared that he started crying at the top of the hill! By then it was too late! He did fine though and at the end we all cheered for his bravery. He was proud of himself, but fom then on he refused all the big rides and preferred the little kid ones. Who could blame him!

Back when we went to Knott's when Carson was a baby we did one of those Old West pictures. Well, Brian had it planned that he would take one with his old partner with their real badges. I snuck a few pics of then as they posed. Then Stu wanted to get in on the act. I think Brian looks really mean!

School Days Update

Well, I haven't posted in a while so here is the update:
Stuart is in his sophomore year at Lakeside Highschool. He has very long days. He goes to seminary at 6:30 and then straight to school all day and then football practice till 6 or 7 at night. Then as soon as he gets home he eats, and has homework and goes to bed. I feel so sorry for him sometimes. I feel it is too much for such a young man, but he insists on playing football and I insist on seminary so thats just the way it has to be for now. He is on JV football and also on the varsity team, so he has two games a week. As I write this it is 10:00pm and I am waiting for him to get back from an away game. Despite the long days he is adjusting better to highschool so far this year. His grades are much better and he even has A's in Chemistry and World History! We are holding our breath and hope it lasts. This is better than he has ever done as far as grades go.
Jackson is doing great at school as far as we can tell. Its hard to get him to talk about anything. He just likes solitude. But we force him to pay attention to us and give us feedback as much as we can. He has been complaining about being in the school band and so I finally relented and let him switch out. He really wanted to go to drama, and frankly I didn't think it was a good idea. Jackson really struggles with stuttering and being outgoing and social is not really his thing, but he insisted and so far is loving it! I am pleasantly surprised. Maybe this is just what he needs! We'll see if anything becomes of that. Jackson of course had all A's and has the highest grade in his math class. He usually gets his homework done before he even gets home! Its great. He just turned 12 last week and had a sleep-over watching "Goosebumps" movies all night. The boys had fun. He will be getting the priesthood this coming Sunday. He doesn't really seem to care, but he is definitely glad to be out of Primary.
Brooklyn has had quite some changes recently. We have made some medication changes and so far she hasn't had a seizure in a few weeks! Her interpreter emails me everyday about her progress, and he reports much improvement in her attentiveness and signing. I am very encouraged by what I see at home too. She attends to tasks longer, initiates conversation and can reciprocate a conversation as well. Her signing is still only one or two signs strung together, but more is emerging. She actually watches TV now! Before she could'n't even pay attention long enough to one thing to sit and watch, but now she does. It is so nice and gives me a little breathing room! We really struggle when it is time for her daily chores though, such as taking her medicine, brushing her teeth and hair, getting dressed etc. It is very frustrating! She has made me late to work on a few occasions because she just refuses to do these things. She has a sticker chart and we are trying lots of positive reinforcement, but it really just depends on her moods. Over all I see quite an awakening in her countenance. We feel very hopeful for the future.
Carson is my little helper boy recently. I have told him he has to be the model for good behavior for Brooklyn. I use him as an example alot. He has a sticker chart and is so diligent about his daily jobs. He gets two dollars on Saturday if his charts are full. He really likes this system. He is doing well in school, however first grade is a big adjustment from Kindergarten. He has lots of homework every day and his day is longer as well. I am shocked at the first grade expectations! Daily homework is two pages (front and back) of math and writing spelling words, practicing his high frequency words, and reading for 20 minutes. It is alot, but he has adjusted and he now can do most of it all on his own without ay help.
Well there is the update. I am working about 24 hours a week and taking two classes as well. We all have to follow a very tight schedule to fit it all in. What is the most awesome is that Brian is working day watch and we can all be home together in the evenings. What a difference that has made in our family!