Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So Ollie got sick Monday afternoon, by Tuesday he was really sick so I took him to the ped with one swipe we found out he had strep. While he napped that day I started to pack, I never pack that early before a trip so I must have known something was up. I prayed that if I were going to get strep let it be Wed so I’m over it by Friday and boy did God answer that prayer. I was knocked on my butt! High fever, body aches and the worse sore throat ever! I had to take Andi and
Ollie with me to Urgent Care and I was sure enough strep positive as well. Got antibiotics and was miserable that day. It was awful! At 3pm I went to bed. Oliver was napping and Lily was with her care giver and Andrew picked up Andi from pre k. I went to bed at 3pm and didn’t get out of bed until 7am. Seriously! Thank God for Andrew and Sharon (L’s care giver) I couldn’t have done that with out them. I’m still not so great, but fever is gone. My throat is still on fire, but I’m much more functional today so I know I’ll be ok to travel tomorrow. One of Andi’s classmates’s mom offered to take her to the last day of school party so I am just resting at home while Oliver gets into everything. Oh well its safe here for him to do so. I can’t count the times I’ve had strep, overwhelming amount of times and it is awful every.single.time. I read that it is most common in kids and teens. So I guess with strep and acne I might as well pretend I’m 15. Anyway, if anyone wants to send a prayer this way. I still have so much to do and no energy to do anything. And I’m starving. I haven’t eaten since Tuesday night so that might be why I have no energy, but I can’t eat because my throat is on fire! Ugh ok io hate when other people complain so I will stop. I just wanted to check in before I head out!

Last week Lily got sick, this past weekend Andrew went camping so I let my dear friend Julie take care of the kids and me, I may be a bit of a mooch, so what! AND the wifi on my laptop is no bueno so I have to stand in my kitchen to go on line and nothing seems that worthy online. Many good things come out of not being able to hop online.
1. I save lots of money not being able to jump on VS.com and Gap.com whenever.
2. I don’t sit and read status updates on FB instead of doing stuff with the kids. (now I can still read them on my phone and I do so I am no Mother Theresa)
3. I don’t blog about nothing. Just when I feel it’s necessary to bore you.

But things are good, extra hetic! I’m so glad we got my beautiful niece Ariel qualified to be Lily’s respite worker. She is down from Flagstaff (NAU) for the summer and doing great, helping me out so much and school isn’t even out yet! I had Lily’s IEP at 7:30 am today and Andrew had a can’t miss meeting at work so sweet Ariel came to my house at 7am to watch all three kids! Meeting went well and Lily’s awesome teacher will be back again next year (her past two teachers both left at the end of the year) and we’re excited for her to start 3rd (gulp) grade!
We don’t have a final word on Andi taking the bus with Lily, but I’m pretty sure it will work out.
I just can’t believe 2/3 of my kids will be in school! Wow!
Lily starts back with horse therapy tonight at a new stable so this should be fun. She’s had a long break so it will be nice to get her back in the saddle again….(Andrew would give me a simple wow after that quick wit)
Friday I head off to Co Springs for the Rett Syndrome conference, I can’t believe how fast time flies. I’m excited, but very nervous about leaving everyone. Another big gulp. I hope to meet some of you CDKL5 and Rett mamas!

We have been working at this garden, not only growing stuff but we are composting too! I had no idea how much fun gardening can be! Showing the kids how food grows is such a fun experience and it is a great way for us all to be outside together each evening, watering and taking inventory of what is growing, what isn’t doing so well and of course eating the fruits of our labor. Andi Jane’s favorite thing about the garden is this little caterpiller she has dubbed, her pet.

Just wanted to report some good! Andi’s pre k class had a special mother’s day party, they sang for us and we had treats. It was adorable and I felt choked up reading my card that said all the things Andi loved about me. It was so personal and I love that.
Then our whole family was on the trampoline last night for almost an hour. I know memories were made. Daddy doing flips, mommy pretending to try. Us laughing. It was like a one of those photographs in your mind. True to fashion Andi didn’t handle the fun being over and then things got a little sticky, but overall yesterday was a good day. Andrew even put Ollie and Lily down for me when I was making a run to Walgreens. All I had to do was read and pray with Andi and I was off scotch free for the night! Free to catch up on all my shows since Andrew was done by the time I came into our room. Sweet! TV time for me and it was. I caught up on House and The City. For those of you playing along, last night was Thursday, House is on Monday. The City? Who knows when it is on, it just ends up on my TIVO and it is about 18 minutes without commercials so I watch it. Plus I like Whitney’s hair. Anyway, I’ve never been so far behind on my TIVO, but wanna know why? I’ve never had a full nights sleep! Oliver has been getting up anywhere from 3-5am for what seems like ever. I would nurse/rock him and watch a show, put him back to bed and either go back to sleep myself or just stay up and watch another show before getting Lily ready for school. Well heavens to Betsy! Oliver is sleeping. Oliver is still sleeping! I woke up by alarm today! Alarm! Got Lily up, just the two of us, now I am sipping coffee, writing and waiting for the school bus. Lovely morning! Maybe it’s a mother’s day gift. Maybe they want me to return after Colorado Springs, whatever it is, I’ll take it!
So after a week of forgetfulness, lots and lots of running, my cat getting into expoxy and having to take him to get shaved, Oliver being sick and still having fluid in his ears (have to now see ENT) and ups and downs with Andi who happens to be on week two of a nasty rash…..I am seriously enjoying this morning. My coffee. My Lily.

Oh and BTW we are saying goodbye to those beautiful locks on Lily’s head. We’re giving them to a little girl, woman, someone who needs hair and actually likes hair. I’m done with the fights. I didn’t really plan on going that short, but I realize her hair grows like a weed; it is in perfect condition, why waste it by just cutting 6 inches rather cut 10” and send it to locks of love.
Promise to post pictures. Of course I do. Just can’t promise when.

I write this sad entry, pouring out my heart, and then disappear. I assume since you all didn’t see me on the evening news you figured I was fine, so thanks for that. But man what a week. What a week. I look back at weeks like this and wonder how we survived and then realize it’s only Thursday. Last week I had a hell of a time with Andi getting her out of the house to get to MOPS and I show up and no one was there. Apparently they meet 1st and 3rd Thursday of every month. Well I swear this whole year it has been every other week so I just showed up. I even prayed on the way, please speak to me today Lord thru our speaker. I need it. Then yeah, basically empty parking lot. Andi says “let’s go to IKEA since there is no church” so I say “alright” then she tells me my earrings are a little too fancy for IKEA, but I figure we should go anyway. It ends up being pretty fun. The kids were good and I let them jump on the furniture and play in the pretend kitchens and bathrooms. Do I care if I get the ole stink eye from an old lady? So totally not! So that was fun. Then lunch in their cafeteria and on to Andi’s pre k. I guess the Lord told me at IKEA to loosen up. I wish he told the ole stink eye lady as well.
Then although our weekend was great, really great! It was also really busy, flew by in minutes not days and before we knew it, it was Monday again. I was rather bothered by someone who comes into our home weekly as she was not patient and kind to Andi and ended up hurting Andi’s feelings. I told her and she apologized, but left a bad taste in my mouth. I will not put up with it, if it happens again. Call me for the unedited version if you may, but this is the internet and I must protect the “innocent”.
Then it was a week of me forgetting to show up one place, forgetting to send gifts for teacher appreciation week. Not getting Mothers Days card in the mail on time and just not being who and what I want to be as a mom. I tell Andi on our way to pre k, after spending 20 minutes (20 MINUTES) at the grocery store getting snacks for her class, took 5 minutes to grab the snack, it took 15 for the machine to malfunction on me in the self check out. Oh my heart was racing. We were so late. I tell Andi, I am just not a good mom. She says, “Yes you are, you are a great mom”. She’s so sweet… and has no idea. But it is nice that she still sees me as awesome. Then while we are talking I am trying to make a left out of the lane, still in the parking lot and I say “you people are so awesome, thanks for letting me in” and she says “yeah people, you are awesome…but not really, right mom?” So there I am forgetting things, being super late and teaching sarcasm all at the same time. Bravo for this mom.
I know we all aren’t perfect and I will never be even close. I just hate being a scatter brain and I need to get my crap in order. I just seem to get overwhelmed when I look at my calendar lately. Thank God for bill pay online or we’d probably be homeless. Not for the lack of money, but for the lack of time to pay bills. This was just one of those weeks and I will be glad to see it go. Honestly I will be glad to see this month go. In 3 weeks I will be going to CO Springs for the Rett weekend conference, then the girls will be out of school and seriously that sounds so nice. Our own schedule. Lazy mornings. I’m actually looking forward to not sending Lily to summer school. We’ll do our own thing this summer. It will be even better! Maybe a week in Greer? San Diego?!
Andi’s boundary exception was approved and she will be going to school with Lily! I have Lily’s IEP at the end of this month and I will see if Andi can ride the bus with Lily. Wouldn’t that be perfect?
MOPS was today, finally, and it was awesome. It was a nice time to fellowship and I got to listen to one of our fabulous mentor moms talk about making a legacy with your family. I do want to make a legacy as well, and have a close family and I want to see my kids grow into awesome adults. I just gotta get my poop in a group.

Whenever I find myself chatting with a second grader I am always surprised by how bright they are and I enjoy every minute of our conversation. Then when we stop talking and I go along my way, my heart starts to sink a little bit. I can’t help but feel sorry for the greatest loss that we have and that is Lily’s voice. No matter how ok I am with her special needs, the wheelchair, the seizures (well sort of ok with), the pooping problems, and everything that goes along with her, it is the loss of her voice that I just can’t seem to ignore or get over. It is something that trips me up at the least expected moments and I don’t get angry. I just feel sad. Some reason today as been a rough day. I know I will snap out of it and writing will help me do so, but I’m just going to take some time to mourn the loss of what I was supposed to have. No matter how many kids we have and all the milestones they succeed easily, it will never replace what Lily can’t do.
There is a Christian song that even mainstream music listeners have probably have heard and it is called “I can only imagine” and in that song he talks about what he will do when he stands before Jesus. He says “Surrounded by Your glory, what will my heart feel Will I dance for you Jesus or in honour of you be still Will I stand in your presence or to my knees will I fall Will I sing hallelujah, will I be able to speak at all I can only imagine.” That song has a double meaning to us because we wonder that about Lily, will she dance and sing praises. Will she finally be able to do all the things on earth she never could? And it makes me think that one day, hopefully in a long time from now, Lily and I will be sitting on a park bench surrounded by pearly gates in a setting similar to central park in late spring, and we will be talking. We will be laughing. We will be singing. We will make up for all those years she just listened to me and I will listen to her. I will relish in the sound of her voice. And laugh at all the jokes she will tell me and tears will flow, and finally not from sadness, but from pure joy. I pray that day is very far away, but I do have to say I look forward to it.

As I mentioned we had our back yard revamped (yes I know I have failed to upload pictures, hang me) and with that we had to have some deliveries made. Block was one delivery made to the house. The guy shows up, long hair, bandanna, tattoo sleeves… you get the picture. Well I let the kids watch him unload the block, because it was kind of cool how he got it all off the truck and on the drive way, and maybe the guy was fun to watch as well. Who said that? Anyway as the guy finishes and drives away he waves to us. Andi Jane said, “Mom! Did you see that? He waved to me!” “I know, he was really nice, wasn’t he?” “Mom, I think I am going to marry him”.
Oh brother.

Lily’s having a big seizure each day. The new med is making her so tired and I’m thinking it may not be worth it. I really hate trying to figure meds out. They make her tired and she is still having seizures. I would love to take her off everything, hospitalize her, and start from a clean slate. Lily is on four meds right now and I know she doesn’t need all four meds. It’s so frustrating! I just put her on the full dose today of the new med, Vimpat, and we will see if it helps, if not I may just take her off. She is spacey and sleepy on it and I’m just so tired of trying to figure it all out. I don’t know this stuff. I’m not an expert. I’m a mom thrown into this and I’m just trying to find my life boat. Can someone just toss me a life vest? Please?
Talking about being thrown into this, yesterday Andi Jane spewed evil hatred upon me, and left me wondering what the hell I do with this. She didn’t get her way and bam, she told me she hated me, won’t love me, that I am STUPID (a very bad word in our house, she might as well thrown an f-bomb on me). It was awful. She was out of control. I drove home while she yelled at me and didn’t say a word. We got home and I said, “Get your butt in your room right now. RIGHT NOW!” She went and there she stayed until dinner time. It was about an hour and a half. But I was like, what do I do with this? I’ve seen her freak out before, but this was ridiculous! She was very apologetic later, but still… I just didn’t know what I am supposed to do. I didn’t react, I didn’t yell, I didn’t spank. But then I felt like a doormat. Did I do the right thing? I have no idea. I didn’t take her with me to the store and that is a punishment in itself, since she goes everywhere with me, but I just think I needed to do more. Or maybe I did enough? I don’t know. Sigh.
Oliver is still my sweet boy. Thank God. No complaints about him, yet. Give him a few more months I’m sure.
There IS good news though, the guys finished up our back yard! Yay! It looks great! Well not really finished it, the big stuff is done, we still have to paint and put in the actual BBQ in but otherwise they are done. The kids loved having Papa Steve here for 10 days and I think him and Andrew really enjoyed working together, well except when they were close to killing each other. 🙂 I am going to put some pictures up on flickr today. If we are facebook friends you will have seen it already, if you aren’t…. why not?