Wednesday, December 21, 2011

Holiday Card Letters

Yeah, so I do not do them. Never have. I feel like I would be lying if I told everyone about all the wonderful things about life and left out the icky parts that consume us a ginormous part of the time. Yes, I am very blessed to have 3 beautiful children, a loving husband and a home over our head, but there are lots of little things that "add up" that seem to be overwhelming. If I were to write a letter it would go something like this:

Greetings from the R family:

This year has been an interesting roller coaster ride to say the least.(as usual for the last 4 years) We feel very blessed to have each other and to be alive! At this time of the year in Maine you would expect snow, but this year we got it for Halloween and Thanksgiving. I guess God is trying to shake things up a little. Now on to what everyone is up to.

S: He is still working at the same job for almost 12 years. He also has a second job to keep up with our health care expenses.  He almost left, but then his boss decided he wants to throw people with mental illness and developmental disabilities out on the streets so we decided it was wise for him to keep that job for now. In his spare time..................oh wait, there is no spare time. He works 70-80 hours a week at 2 jobs so we can keep a roof over our heads. When he gets a chance he helps out with the kids and is very good at trash duty every Tuesday morning. He is quite grumpy because of the awake overnight shifts, but manages to stay awake on Sundays so he can watch the Patriots play. We managed to both make it to Sam's gingerbread making party today.

Me: Hot mess. I stay up way too late so I can get some quiet time. That is when I watch my inappropriate trashy tv that little eyes should not see. Right now I consider my job to be case manager and/or the executive advocate for my kids. I have not had to go into the school to advocate for Kailyn yet, but get called or texts multiple times a day to deal with Type 1 Diabetes issues sometimes. No one scares/intimidates me anymore. I once was scared of speaking my voice, but now I say everything on my mind and make sure that things are being done right.  If things get bad enough there is always home schooling. I have gone into school for Sam a few times and even tracked down the Principal to set things straight. I deal with juggling Dr. appts. including, but not limited to; Developmental Pediatricians, Regular Pediatricians, Pediatric Surgeons, Pediatric GI Doctors, Pediatric Endocrinologists, Pediatric Neurologists, Pediatric Epileptimologists, Pediatric Pulmonologists , Social Workers, Physical Therapists, Speech Therapists, Developmental Therapists and Occupational Therapists.  I volunteer at the school when I can, joined the schools PIE group (PTA), bring my kids to soccer, volleyball, band, kids clubs, basketball, dance class etc.... Luckily we live close to everything so the mileage is not bad if any at all. (I can walk to the kids school)  Grammie is also very willing to help with the car pooling. I don't like to bring Keira out too much because I fear her getting something that might set off seizures. In my spare time (cough cough) I sit on the couch and think about all the things I should be doing, but get overwhelmed so I do nothing at all. I play games on my phone, chat on twitter or the phone. Forget about out.... Oh, I almost forgot. I also had pneumonia this summer and suffered my second PE. Thankfully I did not die. 1 in 3 people do. Luckily I have been spared twice and now I am on blood thinners for life because of a genetic blood clotting disorder. I get to go to my MD and get my levels checked every 1-2 weeks. I hope to start working on getting my pre-pregnancy body back soon!

Kailyn: She is doing really well this year. Her anxiety levels are way down. She has joined Band and does  Tumbling, Hip Hop and Ballet classes. She also enjoyed Cheerleading for the Gorham Grizzlies.  She is doing well socially. Seems to have a great group of friends even though most of her old friends went to new schools. We have had a hard time keeping her Diabetes under control, but managed to get her back down to levels so that she won't go blind by the age of 20. (one of many complications)  I worry daily about her. I have been hearing a lot of stories about children dying from T1D lately. I should not read them, but can't help myself. I want to know why so I can prevent it from happening to K.  She is a very happy and helpful girl when her blood sugars are not high or low and is growing into such a beautiful girl.

Sam: He is the one I worry the least about. Sam loves to try every sport thrown at him. Soccer, Volleyball, Football, Basketball. He particularly LOVES football and wants to play tackle football next year.  He still has High Functioning Autism, but is managing to make his way in this world. He is doing things well beyond we ever hoped or dreamed when we were given his diagnosis 4 years ago. (the first devastating blow to our family that would start a domino effect for 4 years and counting.) He was not talking at 3 and was diagnosed with Classic Autism at the time. You would never know it unless you spent a good amount of time with him. Academically he is catching up. He is at grade level in Math and does not get Title 1 support for that anymore and is at grade level for Reading, but still receives support due to his anxiety. Especially around test taking.  He still thrives on routine and has his issues, but nothing that we can not deal with.

Keira: Our little trouble maker. I think I say "get down" 300 times a day right now. A year ago now I wondered if she would ever walk. She is a completely different child than then, when she was diagnosed with Failure to Thrive. Now she is climbing up a storm. I wish we could afford a jungle gym for the basement. She was diagnosed with Autism Spectrum Disorder and we are waiting to see if we can get the ABA we want for her and know that she needs. She is not learning to talk and still has her g-tube. We had to put her back on seizure medication because the Myoclonic seizures came back after over a year of being gone. We are not sure if it is due to trying to wean the G-tube feeds so those are back again. I don't care if she has it forever as long as she can talk and function. When she was having the seizures she was not uttering a word. (Usually gibber jabbering)  Our hope is for her to be where Sam is in four years. Early Intervention is the key and I am advocating for it tirelessly.  Besides being a trouble maker she is a ton of fun. Loves to run around nakey and hang with her brother and sister. Dancing and singing are major favorite past times. Twinkle Twinkle Little Star and Itsy Bitsy Spider being the top two. Reading and looking at books are fun too!!

So there you have it. As bad as it sounds, I guess things could be/get worse? I do have woe is me days, (getting far and few between). I think I am getting used to our new normal of craziness.  I have given up the dreams of a perfect ideal family, because there is no such thing. I don't care if my house is messy. (I don't like dirty though) I don't care about gourmet meals. I care about my children and husband. If every ones needs are met at the end of the day then it is a good day. THAT is actually a perfect day.

Hope you have a Merry Christmas and A Happy New Year!!! ;)

Disclaimer: This letter is totally sarcastic, but almost reality. At least ours. There is much more to our life, but like all good sticky sweet la la la our life is wonderful letters, I had to keep this a bit short. lol