Sunday, January 31, 2010


It took me awhile to send Lily to class at our church. Then when I got comfortable with the kindergarten class I kept her there for 2 years and then finally this past September we put her in a class of kids her age (2nd grade). The room is separate from the sanctuary so this was scary for me. She wasn’t just outside the door; she was outside the door into outside and into another room. But we took her. Andrew typically drops the kids off since I need to get to my class to teach aka baby-sit and he always tells me about this little girl who is so nice to Lily. I think it is sweet, but ignore him since we are always busy talking and chasing kids. So one day I am the one to drop off Lily and there she is. She says “Lily is here!” she shoves a chair out of the way and helps me steer Lily and sits right next to her. I’m caught a little of guard by this as most the other kids just stare as we wheel by. I say bye to Lily and go into church and tell Andrew about this little girl, he lets me know that he’s told me about her many times before. Well I can’t get her out of my head so today with a sleeping baby in my arms I ask the children’s ministry leader who this little girl is and who is her mom. I needed to meet this woman. She gave me their names and I was going to look them up when I got home, but while I was in the nursery waiting for moms to come pick up their kids, in walks a darling family asking to see Kim. I say I’m Kim and recognize the little girl, they tell me that they were sent here to talk to me and I just blurted out “I just wanted to thank you for raising such an awesome little girl” I was blubbery and rambled and not really sure what I managed to get out. I had planned to formulate a well written email thanking them. Because I am much better in this form that verbally. But there they were right in my face and the mom started to cry so then I had to change the subject since I’m not a fan of that crying stuff. I found out that it is indeed a small world and her son is in the AM class that Andi attends PM. The dad told me how he appreciated me telling him what I told them. I’m not even sure what I said, but I just needed them to know that their little girl made my world feel safer. I’m sure they already were but I wanted them to be proud to have such an amazing child with a heart like that. I’m weepy and emotional today. That did something to me. Being able to let parents know that they are doing the right thing, made me feel so good.
A few weeks ago my beautiful 19 year old niece Ariel spent the day with Andi Jane and a couple days later she sent me and email about Andi and what a great kid she is and tells me it is because of our parenting and because of Lily that Andi is who she is. That email swelled my heart and I feel that I gave those parents that feeling as well today.
I love our church. I love that I get to be a part of a church that doesn’t just say pray for others, it does for others. A team went to Haiti with Dr’s and nurses last week on a whim, because it needed to be done. I will share the blog so you can see for yourself the selflessness of these people. This church cleans up neighborhoods in our own city as well as builds homes in Mexico and changes lives in Malawi. I came home today knowing that money I sent went straight to Haiti last week. I love being a part of something that doesn’t just say we should do something, they DO something. I come home every Sunday feeling empowered to follow my dreams and passions! Church isn’t just signing a hymn from page 83 and reading scriptures that make no sense. It is living and loving God by living and loving other people. Can I get an Amen?
Here is the blog:

Wow....If I were talented I could've written this

Saturday, January 30, 2010


I'm sitting here at 9:52pm, just barely got the boy to sleep (what was that all about?) and the house is quiet. Andrew went up north again and this time took with him Andi Jane AND Lily. It's a nice break, but honestly, I'm bored. I had to do a lot of cleaning to get ready for Ollie's party next week and yeah, well the baby isn't much for conversation, so yeah I am bored. My mom used to tell me that I must be a boring person as a rebuttal to my 20 calls a day to her at work during the summer break telling her how bored I was. So I guess I am indeed a boring person. It's amazing how busy I always thought I was when I just had Lily and now caring for a baby by itself is a piece of cake. It isn't really, but compared to having all three at home, yeah it's easy. I'm tired and talking like a crazy person. It's funny how different life is when you are alone. Like eating for instance. Last night I made myself a nice salad, a yummy pasta Andrew doesn't really like and had a beer. But today, today I did not feel like cooking yet I had no idea what I wanted to eat. I had the opportunity to eat anything I wanted, yet had no clue. Andrew gets so annoyed when I say "I don't care" to his dinner ideas and this should be proof, all alone with any food choice I desire, and I still don't care. I did however have to eat and made a nice choice of Pei Wei.
Oliver is being a sweet boy despite the fact he still has an ear infection. We went into for a follow up and his ears were still a mess! I was shocked! He is clingy, but I sort of thought it was a personality flaw. Maybe once they do clear he will be able to do an activity for longer than 15 minutes without looking for me and crying at me when I walk away to do laundry. You'd think I kicked him in the head when I walked by him without acknowledging him. Tears and all. My baby boy. He is a walker now too. Like that is what he does, no mas crawling. No mas dirty knees, maybe the calluses will be gone now.
Lily got antibiotics as well to try to get rid of the green gunk she's had for freaking ever. I haven't seen her today, but yesterday it was still pretty bad. Poor kid. She needs a nose sucker machine. Anyone have one?
My mom called me a little while ago and said Andi Jane is coughing and has a fever. I couldn't believe it. She was just sick 2 weeks ago with fever, ear infection, pink eye. How can she be sick again? She got the flu mist on Wednesday and I was told to keep an eye out for cold symptoms, but my mom said she is very hot and coughing bad. WT?????? How can a child be sick that often? I don't get it. Andrew said she only went down the hill once and was crying and whining and that makes sense now. My poor girl. And she was breast fed for 26 months! There goes the healthier kids argument.
Wow! Call me Ramble Mcrambler. I'm tired, good night. My family (the rest) comes home tomorrow!

Tuesday, January 26, 2010

Geneticts update

Monday my mom and I took all three kids to Lily’s geneticist appointment at the hospital in downtown Phoenix, the appointment was at 8:45am. We amazingly made it there within minutes of the appointment, yet didn’t see the Dr. for over an hour and because she is so thorough she sat with us for well over 30 minutes we ended up being there over 2 hours. Thank God my mom came to help! I would have gone crazy!
We really heart the geneticist. That is modern terms for love. We saw her years ago when Lily was an itty bitty and after all the tests they found nothing, I gave up on that avenue for awhile. It’s funny I never called her for the CDKL5 test, but we weren’t following up with her at that time and I thought I could just get our neuro to do it. Even when he shut me down I still didn’t go to her, but our pediatrician said he’d do it and since I was convinced that was her diagnosis I knew I just needed someone to sign off on the paperwork with an MD at the end of their name, I never thought about her.
Then the test came back negative and I quit for awhile searching. That was back in 2006.
It was 2008, before we got the call about the positive re-test, I had gotten an email from a CDKL5 mom who said she just knew Lily had CDKL5. I then started looking back into it and decided to call the geneticist and see if we can test Lily again for CDKL5. I looked at the data on CDKL5 and if Lily didn’t fit every single symptom then I don’t know who did. So I call, get Lily scheduled for months out and a month later we get a call from the pediatrician who says Lily was re-tested and she tested positive. We hadn’t even been to see geneticist yet! Man, this is a long story. I keep our appointment and we saw her last Dec (08) and we have been following up every six months since. She has diagnosed one other child with it so far here in the Phoenix area. She is incredibly smart (obviously) but also has amazing bedside manner, she is a mom herself and is very caring. She went over Lily’s whole body, she asked me questions, wants to do an upper GI next appointment to make sure Lily doesn’t have reflux. She asked for a copy of Lily’s EKG and wanted to make sure she has no arrhythmias. I guess Rett girls can have that problem? She asked me about her breathing, wants to follow closely with her scoliosis. She understood my needing a second opinion on the bracing and said that she is still young, but we will watch her closely. She asked me what she could do for me and made sure I am taking care of myself. I have never had a Dr. ask me if I am taking care of myself. It is so obvious she is a mom.
Anyway although the appointment was long and probably stressful for my mom who was trying to entertain an 11 month old and keep a very loud 4 year old quiet, it was a great appointment.
Lily has a runny nose yet again and I don’t know if it is a cold or she is having a reoccurring sinus infection, I think I better take her into the Dr. to see if she needs antibiotics. Oliver has a follow up on his ears tomorrow so I will just bring her in for a two for one again.
Andi Jane is doing great, full of her usual spirit and happy. Oliver is almost one and walking all over. We are having a barnyard party for him with a petting zoo here next Saturday. Should be fun, except that I am not happy he is becoming a toddler. How did he grow so fast? My mom said yesterday, he is going to have a temper, and I said going? He already does. Here comes the fun times!

Thursday, January 14, 2010

Mother of the Year!

Oliver started having cold symptoms on Monday, just when Lily and I were getting better. I didn't think too much of it since well it is rare that someone doesn't have a cold in our house. Then Monday evening I was at Target with Andi and she was a bit whiney, I looked at her eyes and said, "Oh my, you are sick" she said her throat hurt. Well it wasn't an hour later we were home and she was running 101 fever. That poor child, her eyes tell me more than her mouth ever can so she will not get away with much as a teen unless she can fix that. I still think nothing of it, Andi always runs a fever whenever anything is wrong with her. I'm sure in a few years a math test will put her at 104. So Tuesday I keep her home from school and take both kids into the office. Oliver has been very clingy and whiney but he never had a fever so I just figured the cold bothered him. Then yesterday Wed, I keep Andi home again since she was still running around 100, not high but high enough to keep her home. I did take them to the gym with me. I figure everyone has colds, mama needs to get her work out on. Besides Andi seemed totally fine. We do some running, probably pushing my luck with Oliver, then we get in the car on the way home and Andi says, "my ear hurts", I tell her we'll go home and get some bubble gum medicine (motrin, healer of all) and then starts getting more hysterical. At home I put Oliver in his crib and Andi and I sit in the rocking chair and she is screaming about her ear. I give her Motrin, I put ear ache drops in her ears, she just screams and screams. I call the Dr. they say come right in, I explain I have a sleeping baby so we push it about 90 min later. She cries and cries on my lap, I rub her back and she falls asleep. For Andi, that is a sign something is seriously wrong. Andi does not nap. An hour later I take the kids to the Dr. and he looks at Andi's ear and says it is moderately infected in her right ear. Then he says let me peak in Oliver's ear and he says "ok raging infection in right, moderate in left." Then he says "pink eye as well". All he said he had to do was look in his eyes and knew he had an ear infection. Ouch to my mommy heart. Here I am dragging around this baby all around town, putting him in daycare at the gym. Complaining that he is whining and I am worried about Andi who I could tell by looking in her eyes that something wasn't right. Sigh.
Of course we are in a 72 hour transition of an insurance swap so we're not covered for rx. I tell the Dr. Andi refuses Augmenten so he rx something else that taste like strawberry milk. Guess how much the GENERIC costs? $215. Per kid! Target was very kind and worked with me and all I have to prove is I have insurance in 5 days and we'll get reimbursed, and she figured something out to get the total down to $150, so if we don't get that proof of insurance in time although I will be out a buck fifty, that is a lot better than a truck payment. Sigh. Insurance crap.
So yeah. I am worried about one kid who is not near as sick as the other whom I wasn't worried about. Mother of the Year.
Tomorrow we are headed up north to go snowboarding. Lily and Oliver will be in the child care center there, they said they will have a one on one staff member with Lily, cool right? Andi will do lessons again and I will get back on a snowboard for the first time since Lily was a baby. Oh brother. Don't be surprised if I am posting from a hospital bed next update.
Go Cards!

Thursday, January 7, 2010

I got it on camera!

Little man just started taking more steps while watching Andi at gymnastics. He wouldn't have fallen if he didn't have to clap for himself.

Wednesday, January 6, 2010

Big boy!!

My baby turned 11 months yesterday, ok our baby, but ahhh he is my little cuddly lovie boy. And he turned 11 months yesterday. I really thought his babyhood would have lasted longer. I thought if I appreciated his infancy, reveled in it all, he would have stayed a baby longer. But nope. He's almost a year. And he took 3 steps to me today! We were loosing hope in him walking, he has been crawling since the day he turned 5 months. He was pulling up at 6 months and cruising at 7 months. We were sure he'd be walking at 9 months. 10 for sure. I mean the child climbs up the couch, but walking he says no way. He stands for at least 10 seconds, claps for himself then goes down and crawls. And he crawls fast! So tonight in the kitchen we couldn't believe our eyes when he went from Andrew and took 3 steps to me!
And today he cut his 7th tooth. Lily's loosing the teeth and Oliver's getting them. And Andi Jane is pretending hers are loose.
Oh and who watches Modern Family? That show is hilarious!!! I love it!

Sunday, January 3, 2010

My co-pilot

Andrew decided at almost 5 years old, Andi Jane was ready for her first snowboarding trip. I was a bit nervous, but Andrew is very skilled at snowboarding and he is a good father so I let go a bit and tried to relax not thinking about my baby girl flying down a hill of ice on one board. One small little board that happens to go really fast down hills of ice.
It’s amazing how much you take for granted when you have it with you at all times. I rarely give my husbands shout outs because in my eyes I think it goes with out saying, but maybe it shouldn’t.
This weekend it was Lily, Oliver and me. When I am home bound with the two non walkers I don’t get out much. It is way too much work. I did try to return some shoes at the mall while Lily spent time with her hab worker. That didn’t go to well. The gal at ALDO was an idiot or their return policy is idiotic, whatever the case all that ended up happening was I yelled at a stranger and then had to go back home. With my shoes that are too big for me. With two receipts in hand btw.
We managed a couple walks because the weather here is freaking awesome but that was about it. I got to sit and feed two mouths by spoon three meals a day, not to mention snacks and drinks. I had to bathe two people, dress two people, put two people to bed. I did get to spend some time mastering my Wii golf and tennis skills after they went to bed but all in all it was pretty boring. Don’t get me wrong here, let me throw in my disclaimer, I love Lily and Oliver. Of course I do. But they aren’t much for conversation and with Andrew and Andi Jane both gone it is very quiet in the house. Well except for when Jake on the challenging team in tennis was kicking my booty. Then I got a little riled up. But that doesn’t count.
Now they are back. Apparently Andi Jane is an old pro at snowboarding and her and Andrew had a great time also Andrew thinks you will be seeing AJ at the X Games in a few years, he dreams such small dreams. I am now trying to write while Andi keeps picking up Oliver while he screams at her. Lily is rolling on the floor and Andrew is playing my Wii and I feel so much more comfortable now. The loudness feels like home. Lifetime has been shut off and football is on, but that is ok, that means my husband is home. There is yelling in my ear and that is ok because it means my rambunctious girl is back where she belongs.
When I went back in my journey I failed to mention who was by my side the entire time. I don’t really think I was leaving him out because he isn’t there; I left him out because he is always there. We are yin and yang. There is no me with out him. I am not the mother I am with out him being the father he is. He is the full glass to my not so full glass. And when he is gone, even when he is doing something with his child, being all he can be as a father, I miss him and want him home. I want him at the table with me, feeding the baby while I feed Lily. I want him telling me funny stories about his friends. I want him telling me about his new favorite song, because it will be the number one song on the countdowns not much after he tells me about it. He is a music nostradamus.
So if he is not mentioned, it doesn’t mean he is far from my heart, actually quite the opposite. He is quietly steering the wheel on this road of life. Sometimes I wish he’d share his feelings on Lily here and how he got to the place of acceptance with her, but his story is so simple. She was born and he accepted her. She had her first seizure and he accepted her. She never hit those typical milestones, he accepted her.
It is me who has to psychoanalyze it all. The one who has to write out her feelings to the world to figure out why and how I feel the way I feel. He is a true rock star and I simply adore him for the man he is.
Now if you’ll excuse me I am off to kick his ass in tennis on the Wii.
And they said we wouldn’t last… no really they did.

Friday, January 1, 2010

Journey #3 The Light

Anger has to fade. At least for me it does. This must be a personality trait of mine. I don’t have the ability to hold a grudge and being angry doesn’t suit me well, so it had to fade.
To quote one of my favorite movies “Stop feeling sorry for yourself! It’s bad for your complexion!” What movie?
But how to free oneself of that anger? Looking back now it seems like there was a light bulb moment, but really there wasn’t, I’m sure there wasn’t. But you know hindsight.
There were a series of events that all worked together to help turn the light back on in my life.
One was reading a little book called Purpose Driven Life by Rick Warren. During the reading of that a lot of things seemed to make a little more sense. I started to realize maybe I was praying for the wrong things. Maybe being on my knees praying to make Lily “normal” was not what I needed to be praying for. I needed to pray for myself. Pray that I could accept Lily for who she is and pray that I do what I need to do to be her mom.
Now, easier said than done, absolutely, but I was on the right track. It took a lot to start praying again, it was a slow process but when I finally prayed that prayer the one that said “Lord help me”, I felt a weight come off my shoulder.
Having Andi Jane helped a lot a lot (I purposely wrote a lot twice to make a point). After I realized Andi was ok, and that wasn’t easy to finally realize, I was able to enjoy those typical milestones with her and enjoy Lily for the sweet cuddly girl she was. I’ve said it a million times; having both those girls is like having the best of both worlds.
And time. Time heals all they say, right? Well sometimes clich├ęs are made because they are right. Over time I started to see who Lily was and who Lily was meant to be and I just started to accept her and all that came along with being her mom. And acceptance doesn’t mean I lost hope, it just means my sights were set more realistically. Some can believe that things will be how they imagine it to be, but not me. I am more of the hope for the best and plan for the worst because having your heart crushed on broken hopes hurts way too much.
None of this goes with out saying I still wish to see Lily run, laugh and talk. Oh to hear her voice. To hear her tell me about her day…that is the hardest thing about all this. Never hearing her voice. Having to be her voice. What if everything I think she likes isn’t what I think it is? I would love for Lily to say, mom actually I hate pink. Although picking the blue wheelchair kind of told me that. But yes my heart still breaks for that little girl I never got. But I have to remember to thank God for the little girl I did get. There were times (before Andi) I used to wish Lily would throw herself on the floor at Target because she didn’t get what she wanted. Then I had Andi Jane do that exact thing and I said, thank God Lily doesn’t do that. But no matter how accepting I am I can’t pretend that raising a special needs child, especially a severely affected special needs child, is easy peasy and I always have a great attitude because that is a lie. But staying angry at God and the world in general isn’t fair for me. Being angry only hurts me and my marriage and my family. So I really only had two choices, be angry or get over it. I chose to get over it. Some days I want to be angry and some days I just let myself be. But other days I fight with myself. And other days I wake up just excited to see Lily and revel in all that is Lily.

Crazy Baby

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