Tuesday, March 27, 2012

"Continue being Awesome"

I’ll be an old lady in my death bed and still remember him saying to Lily, touching her face and saying “continue being awesome”. It was a heart breaking goodbye said to a very special family who touched our lives in ways I could never express and those were the final moments I remember of that goodbye. “Continue being awesome.” A memory I have tucked in my heart that makes me cry at the very though of because it’s really awesome when you see someone who “gets it”.
Not too long ago I was talking after church with a friend whom we know each other through church but haven’t spoken a whole ton, but I really like her and after church while Andi Jane and Oliver played with her kids, I stood by Lily and we talked. We talked a lot. They are a very cool family willing to pack up their lives and move to Haiti. Haiti! Talk about sacrifice! Talk about making a difference in this world. So yes I wanted to talk to her, how amazing are their lives!? And while we are talking the conversation sways to Lily, as it often does, and I mention how we have a caregiver who comes in several evenings a week that helps with feeding and bathing Lily. While I talk I am thinking in my mind, am I being judged? I am supposed to be Lily’s caregiver, I am her mom. What is she thinking? We don’t know each other that well maybe I should be quiet. And that is when she says “that’s wonderful, that way you can be her mom and not just her caregiver” I agree and continue to talk, but my heart was at ease. We talked some more and when we said our goodbyes I walked away feeling a peaceful feeling. Then in typical over thinking me fashion I thought more and more on it and what she said and what a relief if was hearing coming from someone again who doesn’t necessarily “gets it” but “got it”.
There are no “normals” when dealing with a special needs child. If caring for your child in a way that each day you do things that keep them alive than there are no “normals”. And yes I understand the basics of life, making sure they don’t run in the street, not letting them around a pool, feeding them food, yes those keep your kids alive as well, but I am talking diets, medications, oxygen, surgeries, tubes, etc. Special needs. When that is your life, there is no “normal”. Sometimes you just want to fit in a world you just never feel like you fit. So you lower your expectations for some people. Not with ill intentions, just knowing when they don’t walk in your shoes, they just don’t understand the sting of the word retard. How could they, they never read it on their child’s medical record and felt like they were just stabbed in the gut. I know that if they did read those words they would have never said that word.
I am fortunate to have two other kids that laugh, fight, play, speak, feed themselves, and having them lets me in on this other world of parenting. The one where we can laugh about what they say, complain about what they do, brag about their skills and accomplishments, but having those other two will never replace the things my daughter can’t do. So it puts me at and odds. A place of wondering where do I really belong?
There are a few days a year that feel like the puzzle is all together like recently we just had one of those days, a day at the park that is for Special Kids and their families. What a breath of fresh air that is every year. Seeing Lily’s friends and their parents who walk in the same cute special shoes we walk in day after day, what a relief it is to see them. It is where I do feel I belong, I feel comfortable and welcome. But every day can’t be like that so I have to say how wonderful it feels to come across those who don't “get it” but do “get it”. People who have typical kids who run amuck and are healthy, yet somehow “get it” and when I come across those people I don’t want them to leave my side. Which is why the close friends I have are the close friends I have. It’s whom I lean towards.
I watch people, I watch them how they watch us. I dislike those who stare and love those who smile. I like those who touch and make a point to talk to Lily. I like those who will lean against her chair when standing by it. And I love those who come over and see her on the floor and lay down next to her and those not afraid to give her a big fat kiss or a nice warm back massage. Those who say I want to help you, what do you need? Those who ask specifically how she is, how her diet was going, how the medication is helping? How are her seizures?
I know not everyone is so comfortable going out of their way. I know some people aren’t so keen to touch, or some may worry I am not going to like you touching her and if you are a complete stranger I am probably not going to like you to touch her. And some don’t want to feel nosy or pushy. I don’t hate you for not asking, for not touching, I am just saying I appreciate those who do. And I get it, we are all different. I can’t expect everything from everyone. Of course I can’t. That is silly. I just want others to be aware that kids with special needs are kids. They are just as important, just as cute, and just as funny as all the other kids and deserve your time. And so do their parents. Sometimes we just want to know that even if you don’t “get it” you “get it”.
It’s hard trying to fit in worlds you just don’t feel you fit in. And maybe I don’t need to fit in everywhere. I don’t have to. I just am saying it sure feels pretty great when you are understood and feel like you do belong. And who doesn’t like that?

Wednesday, March 21, 2012

A week to recover

Oh. My. Lord. Six little 7 year olds was biting off way more than I could chew. And I can chew a lot. By midnight I was a nutty mama threatening to send everyone home. They took my threat and raised it. By 12:30am I took Andi aside and put the fear of God in her and guess what... they quieted up. But my goodness sakes. It was a long night. But came the sunlight they were all adorable again. I had to wonder how the other girls days ended up. Because this is how Andi's did.

This is her at her birthday lunch choice, Rainforest Cafe. Overpriced, nasty food, fun place I guess for kids? I am not too sure because when the thunder storm came Oliver dropped his fork, looked at me incredibly seriously and said "let's get out of here" then when we didn't, he cried and sat on my lap the rest of the time. I'm guessing that won't be his birthday lunch place choice.

The rest of her day went well. We were all dragging, but it went well. I'm pretty sure she had the best birthday ever and that's pretty cool. You have to say that like the SNL spoof on Mylie Cyrus if you are gonna say it at all. It's pretty cool.

I'd say her birthday weekend was a success. 7. How is that possible? 7?!

Lily has been ok. On Andi's birthday she had 3 grand mals. On the next day, none. No rhyme or reason. We took her to a natural path Doctor to try some more natural ideas. I'll discuss further when those go into play.

We still have a few days left of spring break. We have 2 weeks and a day here in Chandler, AZ. I feel bad at the vast boringness of it all. On the days I didn't work we have been to the dentist, to the doctor and have cleaned. I have done nothing fun. Nada. We are going to take the kids to the park on Saturday for Special Day for Special Kids that we do every year which is fun, but not even a trip to the zoo. This mom sucks. It's hard working and having a house to take care of and three kids. Fun sometimes seems to get lost ... that sucks. I so so so badly want to just pack the family up and drive to San Diego and have a weekend to remember, but it is so expensive, it just can't happen right now. So our weekends will have to be what AZ can offer. And you'd think oh sunshine for sure right?! Nope! We had to cancel our family party for Andi and Skylar because it was in the 50's and raining on Sunday! It hailed so much it looked like it snowed. Party got moved to Peter Piper Pizza, which is fine, but we had intended for a big water slide and sunshine. That's what you get for planning. Can't complain, pretty certain that is the last cold day til November. Just be ready for the complaints about the heat in a month or so. Just warning you.

Well that is my rambly updated post for now.. Oh some exciting news from IFCR!

"IFCR proudly announces its the 2012 Grant program: The International Foundation for CDKL5 Research (www.cdkl5.com) has committed $150,000 in grants for clinical research projects to begin studying seizures, gastrointestinal and cardiovascular issues as they relate to CDKL5. In addition, IFCR is pledging an additional $200,000 in research support for ongoing projects. These are your dollars at work! Thank you for supporting IFCR, we cannot do this without you!"

Friday, March 16, 2012

Happy Birthday Andi Jane!

When pregnant (by pleasant surprise mind you) with Andi Jane, I said to my OB, "You have to cut her out". With no dx for Lily at that time I thought birth injury could still be a possibility and I was not willing to take that risk. My due date was March 31st 2005 and when we scheduled the c-section date (when he jokingly told me how Hollywood I was being) he said "I'm working at the hospital Thursday March 17th, how about a St. Patrick's Day baby?" I said "great!" And so Thursday March 17th 2005 I went to the hospital at 5am and by 7:30am I was holding my baby. Well I should have been, but her lungs were juicy so they needed to keep an eye on her. Oh and I had a crazy reaction to the epidural that lowered my already low blood pressure 40 points, I don't remember anything that happened during that time, but whatever they used to reverse that issue I was allergic to and spent that day itching myself sore. I ended up getting a shot to finally knock it off. But when I finally got to hold that baby, I thought what was I so worried about loving another baby, I already love her with a love I didn't know multiplied. And that girl was feisty. All the nurses told me so. She never wanted me to put her down and I never did. Heck she nursed til 2. (Don't judge) She made us laugh. She hit milestones so quick just so we knew she was ok. She loved her sister with all her heart and she will do anything at the drop of the hat for her. She has a heart of service. Her teacher tells me that she is the most helpful kid in her class. She helps whomever is struggling. She also won't take no for an answer and has thrown some of the biggest tantrums I had ever seen from a toddler/child. She and I have conversations that make my heart swell. She is nothing and everything I thought my daughter would be. I got lucky that way with both my girls. She is what brought sunshine on our family in dark times. I knew I could get through anything with Lily with her having a sister like Andi Jane.
I thank God for that pleasant "accident" that made her way into our lives with a powerful force.
Tonight we will celebrate her amazing 7 years with 5 little girlfriends sleeping over. Aye Dios MiO! But when given the option for a big party for her whole class or just a little sleepover that is what she choose. And I'd be lying if I said I didn't have sleepovers starting at age 7 and they were awesome. We will have pizza, do some crafts and I'm sure get very little sleep. But knowing what all Andi Jane has given us, the least we can do is give up a little sleep for her. (Well.... except I am pretty sure I never got more than 2 hours of sleep in a stretch her first 2 years of life so I have already given her plenty of that).
So Happy Happy Birthday Andi Jane! Singer/songwriter, author/illustrator, dancer, actress, future fire fighter and veterinarian... oh and therapist... WE LOVE YOU!

Tuesday, March 13, 2012

Whatever Makes her Happy

We had a very encouraging neuro appointment last week. I really love this new neuro, she is so cool and really cares about Lily.
We decided to take her off the diet. She said her main goal is to give Lily the best quality of life and if foods are what she enjoys and the diet wasn’t helping the seizures than take her off. We gladly obliged.
We discussed changing some meds up. Trying some other ideas and giving these changes three months. Then she wants to meet again and decide from there to go through with the completion of the corpus callosotomy.
I am praying in three months we show up and say, she is doing amazing! No surgery needed. We are all aware of the fact seizure free is not really a possibility. But we need to stop the tonic clonics as those are the most dangerous seizures and she is having them daily. They worsen her life quality by wiping her out. They are also the most dangerous to her health.
I know when Lily was much younger, pre diagnosis; we were under this misconception (given to us by medial professionals) that if we got the seizures under control she would be able to develop. But even when she has had better seizure control she never made much progress. She was much happier for sure, but didn’t all of a sudden start crawling or walking. As her mom and I know I can speak for Andrew as well, those aren’t the things we desire from her anymore. What we want from her is to know she is happy. That she feels well. That she isn’t wiped out from seizures, wiped out from a lack of sleep, wiped out from leg cramps at night, wiped out from being on 4 heavy drugs. We want nothing from her actually. We want to give to her a good life. Give her a happy life. We want to know that the life she has lived has been a good one. And we are doing what we can to acquire that. Lately we haven’t seen much joy for Lily. She is on 4 meds. Still seizes every day. Her sleep is constantly interrupted. Her legs cramp up at night. She sleeps during the day. We just don’t feel that we are giving her the best we can so we are starting changes.
It’s gonna be slow weaning meds. Adding. Tweaking. Changing. Trying something different.
But our goal is comfort for Lily. Happiness for her. We’d love to take her somewhere and have her stay awake. Be alert. Enjoy her family. It isn’t like that hasn’t always been our goal, but I think we spent a long time wanting to make her better so she can do things that made us happy. What a selfish way to think.
We will do what we can to make her happy. Expectations gone. Acceptance once again. Breath in. Breath out. Ahhhhhhhhhhhhhhhhhhhhhhh it feels good.
Pray for us as we go through the painful process of weaning meds. Things will be much worse before they can get better.

Monday, March 5, 2012

Fondures, pet funerals and what else ... seizures

When guests showed up they saw signs displaying "Foundure for a Cure", we added the "" in order to make it look like it was a poetic spin on the words on Fondue and Cure, but the truth is it was a big ol mistake that made us all laugh. And now the joke will always be... I love fondure!
We had approx 75 overly generous guests that helped us raise over $4k! The food was good, but trying to serve fondue for a large crowd may be more hassle than it is worth, next year BBQ for a Cure! We had music, dancing, silent auctions, we had a blast and raised money for an awesome cause! Can't wait to do it again!
Still waiting for pictures to post since well we all know what happened with mine... RIP Nikkon.... but will post when I can.
Life has been on the fast track lately and I keep saying I am waiting for things to slow down, but since that isn't happening, I guess I just have to work with it.
Lily has never been sicker or more miserable than on this diet. Ok with the exception of ACTH steroid. This diet sucks and I am ready to pull the plug on it. I think I have been more patient with it than any other times concerning diets, but she has thrown up 3x this month. Lily goes years with out throwing up, this month it is almost weekly. She has gone on three food strikes. She is not happy. It is not working. We see neuro and dietitian on Thursday but I know there is nothing they can say to me to keep her on. I know my girl and I know this isn't working. We haven't even seen a slight improvement in seizures, actually quite the opposite. We have a different suggestion we are going to discuss with neuro. I am fully aware her (neuro) next step is completing the corpus callosotomy (brain surgery) and I am not ready to go along with that plan. We still have one more suggestion. I will discuss further when I know it is a go and everything is set in motion. All we have to say is that no one can judge us for trying each possibility before cutting my baby's brain. No one.
Andi Jane had her first experience with a personal death and that was her beloved guinea pig, Elmer. We had to put down our dog Hailey when she was 4 and she didn't really get it. I think she cried because her mama was an inconsolable mess, but at 4 she didn't quite get it. She had Elmer just one year, he was her birthday gift last year. He lived in her room and he was rather cute. I was the one who had to clean out his cage and make sure he was fed and had water of course, but she loved him. It was really quite sad, I kept going to feed him and saw he still had food and water, I asked Andi "are you feeding him and giving him his water" she said she was. After a couple days I say, "Are you sure you are feeding him every day" since nothing had moved and she said she only fed him once. Days ago. So when I realized he wasn't eating or drinking it was too late. The girls went to school, I went into her room to check on him and dead as a doornail. I am not one who can handle death. Like I refused to touch my grandparents in their caskets. My dad told me I should touch my Omie that it would give me closure, but I just couldn't. I looked like a character on Friends and I know it isn't funny, but I'd try to touch them but I just jerk my arm back. I just couldn't do it. So imagine me with a dead animal. If I can't handle my grandparents, I certainly cannot handle a dead animal. I call Andrew a little panicky that he needs to get home and handle this situation. He does. He put him in a box with a picture of Andi next to him and buried him in our garden. The entire day I was in knots knowing the heart break I have to deliver. Oh man...
She got home from school, she was hyper. She was fighting with Oliver. I just let her go crazy. Doing gymnastics in the living room, running in circles....she was like an unleashed dog and I just had to wait for her to chill out before we had our talk. Finally I said "Andi I'd like to talk to you in my room if that's ok" and she said "ok" nervously of course, she had been running like a feral animal so she must of thought we had to sit and talk about control issues, again. I had to break it to her. It was awful. So so awful. Andi Jane cried when we released our butterflies last year that we had since caterpillars. She has the biggest, softest, squishiest heart of all the people I know. She will save this world or die trying. So this was crushing to her. Now on facebook I had people tell me to swap animals. Andrew told me to tell her we gave him away. Tell her he ran away. I knew those were all options but these are the things that weighed me. I am all for truth. It is a known fact that one of my life quotes is there is no truth worse than your lie. I do not lie. I do not take lies from others. So I was not going to lie to her. Another issue was having a pet as a child is a learning experience. They learn responsibility. They also learn that there is a life cycle and eventually they will die. Especially those type of animals. And one other point was... I was a little glad to not have to clean out that darn cage every Saturday anymore. See truth. Just comes out.
So I told her and her heart broke. I know this because she said and I quote "mom did you hear that crack when you told me this news? Because that was my heart breaking." It was the suckiest night. She had to call all her grandparents to break the news. The worst was listening to her call her Grandpa Steve (Gma and Gpa N were here visiting her last year for her bday when she got Elmer) she just started crying and a man as tough as rocks melted when she cried to tell him the news. It was gut wrenching. That night she cried herself to sleep and I have to thank God she woke up with pink eye. I thought it was from crying, but it didn't take long to realize she had indeed pink eye. It was a blessing because I was off of work that day, had already planned Oli to go to the sitter so I could get errands ran for fundraiser and Andrew's upcoming 30th birthday she and I had a wonderful day together. There were moments she would just burst into tears saying she could have loved him better. Fed him more. Should have told me he wasn't eating. And she should have, and I believe a very valuable lesson had been learned. A sad, awful lesson. But she has recover gracefully. She still goes to his grave each day to talk to him. I can't tell you how beautiful her eulogy for him was that first day. I was bawling watching her. And I really was glad to not have to clean out that cage anymore but watching her I had wished I was able to dig him up, blow in his mouth and made a Lazerith out of that guinea pig. I wanted to run to Petsmart and get another. But I didn't. I let her grieve. And as much as it so sucked, I think I did the right thing. I must have because isn't the right thing to do always ends up being the most difficult?
Needless to say life has been busy. Lily not well. Andi broken hearted. Oli was really sick for 2 weeks, oh both the girls had pink eye. Oh and a fundraiser. Oh and Andrew's 30th birthday! Plus trying to make some big decisions in our home right now.
But I have three beautiful kids! One is going on the potty now! I have kids that make my heart burst with pride. I have a husband that makes me laugh. A husband that makes me stretch myself more than I'd like, but is always challenging me for the better. I have awesome nieces and nephews. I have an amazing sister and brother in law who opened their home to 75 people and without them I never could have had that kind of fundraiser. I have amazing friends who step up to the plate to help me. Who make me laugh. Who make me smile. And I am totally winning this bachelor game I am in which is like fantasy football but for girls who like to watch The Bachelor :) Life is Good! You just have to hold on tight and enjoy the ride

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