Mother's Day

I know better than to put expectations on things. On people. I know better. But I do it anyway.

I think that is why I end up never really enjoying special days. I end up having better Mondays because I expect Monday’s to suck and when they don’t I’m happy.

But Mother’s Day, I don’t expect world peace, but I guess a little sanity would be appreciated. But it didn’t happen yesterday. The day started great, sweet gifts, lots of love and hugs, Andi Jane made chocolate chip pancakes that were really good. Andrew helped with the flipping, but otherwise she pretty much did them on her own and cleaned up. That was awesome! Church was good, I had to work in the baby room the next service and that was great. I had two girls snuggle on my lap the whole time. One fell asleep. If you know me you know I love holding sleeping babies. I was made to snuggle sleeping babies.

Then we get lunch with my family and that was nice too, but I was starting to get frustrated that Lily was on her about 5^th seizure by then. And they just kept coming. It seemed like they were hitting every 30-60 min all day.

The kids fought in the van.

At home there was more fighting, more seizures, and then while dealing with one issue I hear Oliver screaming a pain cry and find him at the bottom of the stairs where he tumbled down to. I was so scared but he was ok. Scared, but ok.

Then Andi says while I am doing laundry “Mom, don’t stress, but I forgot I am star student this week and need a poster board of my life done by tomorrow morning” eek.

And Lily is still seizing this awful pattern so Andrew takes the kids to the store, I give Lily a klonopin that makes her finally rest and I sit on the couch and fold laundry and think what the heck. This sucks.

Did I mention my grandpa passed away on Friday? He was suffering with COPD and I know he is now with Grandma and their daughter Karen, but it was still a shock, as death always is, so sudden and final.  I guess shoving it down to deal with the rest of my crazy life kinda caught up and I was sad. I was upset, I was scared, I was overwhelmed and I was also happy that day.

As I sit and fold laundry, and wipe my tears I reflect on everything and I realized all these emotions are what make life, life. What makes us moms. We can want to strangle a kid one moment and in the next second want to hug and kiss them. We experience peaks and valleys often on the same day and we work harder than we ever imagined, we love deeper than we thought was ever possible and we feel like failures more often than not.

So while I sat feeling sorry for myself that I wasn't getting the Mother’s Day I expected in my head, I was experiencing motherhood in the way only we mothers know how to experience it. So yeah it was Mother’s Day. It was a heck of a one. I’d like one with massages, champagne and being all alone, but those days will come. Yesterday was Mother’s Day in its truest form and by golly why would I not experience it just like that? We survived it, I survived it. I will have more, God willing, and I know and trust that I experience days like this so when an unexpected super awesome Monday happens, I know how awesome it really is.

Oh did I mention my night ended with my dog biting me? Yup, that happened.

Lord please keep reminding me that expectations only end up ruining what precious gifts you have for us. Thank you for my abundance of blessings that fill my life. Keep my attitude right and my heart in line and thank you for loving me the way you do. 

It's a Drag Getting Old

I’m getting old. Not in, I need to find a place for assisted living, I am just coming to terms that High School was a lot longer of a time ago than I think it was. I’m the baby of my family so I really am not allowed to even say this out loud. They say oh you’re just a baby. Wait til your 40.. 50…60.. But even when I get to 40 they will say wait til your 50… there is no winning. But what I am learning is that I am getting older. A few signs have crept up on me lately. I am only 34, but I have had 3 kids and I think somewhere there is a golden rule about each kid aging you by something, I think something like dog years… then add all the time we spent in the hospital with Lily and time spent worrying about her and you know I am about up to 80 life years.

OK in all seriousness I just think the signs of my age are finally starting to hit.

For example… no sneeze is safe. Jumping is not safe. Even if you are in jump rope competitions pretending to be much younger than you actually are. Not safe. If you don’t get this, you will.

Crying happens. Like all the time. It doesn’t matter what I am doing something will make me cry.

All those goofy faces I make when speaking causes wrinkles on my forehead. One big crease that is there indefinitely, unless I get Botox, but then I can’t talk with goofy facial expressions any more… wait… that might not be a bad idea.

Zits. Yup I still got em. But I am thinking it is the amount of grease I produce that keeps me from having too many wrinkles so 15 year old me… quit whining. It’ll pay off. Just stop making those goofy facial expressions.

The expression “youth is wasted on the young” makes SO MUCH MORE SENSE NOW. And you find yourself mumbling it often.

Alcohol, it’s not for a fun night out, it a glass of wine and the remote control after the kids have gone to bed.

And fun nights out. They last til 9pm.

Your weight. The metabolism you bragged about all your life just turned its back on you.

Your mom. She was right about everything.

As I think about all the changes I have made over the years I like to think they have bettered me, humbled me for sure. As for those kids that cause the wrinkles and stress break outs and alcohol dependence (just kidding). They have made me learn to love deeper, to try harder, to worry more and trust God so much better. They have molded me more than I have them I think. And I look back at my mom who molded me and taught me and annoyed me and I think she was right. I should have moisturized every night. I should drink more water. Stand taller. Smile always. Pray hard. Entertain others. Listen to others. Share my thoughts and feelings without regret. Be honest. Understand all points, but stand firm on my own. Care for others, but learn to care for myself.

We all get older. If you don’t well then you die. So although there are many things that can annoy us, make us feel defenseless against it, we also get wiser, we understand deeper, we see things differently. I wouldn’t go back to 20 if you paid me. I’d like my old body, but certainly not the girl inside who had no clue who she was. I still lack confidence in myself. I lack faith in doing things right, but I have come a long way and I pray that I will continue to grow and age gracefully. And I know if I am letting God steer this ship of life we will get where we need to be.

PS not one grey hair yet. Boom!

Happy Mother’s Day to all! To those who have loved someone from the moment they were in your arms, biological or not. To those who taught, who prayed for and loved children, Happy Mother’s Day. Happy Mother’s Day to my friends, my sister, my sister in laws, Grandma Betty, my aunts, my mother in law, and my mom! I hope we all get what we want! (ps a massage and a morning where you get them all up and ready while I sleep, or play candy crush, I think we all know who that was for)

The Eye's Have It

For 7 years Lily has been on Sabril. She was on it before it was called Sabril. We used to call it Vigabitrine. We used to have to get it from a Canadian pharmacy, it wasn't FDA approved for many years.
Now that it is legal here it is cheaper for us to get (ie insurance covers it) BUT the process to get it is exhausting. Eye Dr. every three months and if you miss that appointment you don't get your meds. Even if you missed the appointment because you had a funeral to attend in another state and the Dr is so busy it takes you three months to make up for that missed appointment... you still don't get you meds. And your child almost ends up in the hospital for going cold turkey off the med ... you don't get the med til you see the eye doctor. And we have been seeing this same doctor for probably close to 8 year now. He is wonderful and thorough and I have sent every friend his way (well that needs to see a pediatric ophthalmologist duh). And trust him with Lily's eyes as I have never trusted anyone else. And yes we have seen a few other doctors regarding her eyes. He is the best. Today was another one of these gotta do appointments. One of those you spend over an hour there, she gets dilated and you watch your son play with every single toy in the place. And your phone. And your shoe laces. Ha like I wear shoes with laces. I live in Arizona. But he would have I am sure. But my point is it is a pain. An appointment that is just an obligation.
But today was different. Lily passed out because she had a huge tonic clonic right before she saw the doctor, but they were still able to dilate her eyes and he checked her with his bright light and special little magnifying glass just like always... but today he said... "she is showing damage" What???? He says it is minimal but if it is worse in 3 months she has to come off the medication. The one medication that I had ever seen any real positive results in. For real???
Lily needs what eye sight she has. She can't keep taking this med if she has damage. She is showing damage. This blows.
All I can do is pray. And whatever will be, will be.
If she needs to get off the med I pray for a good escape route.
This road we travel is bumpy and unpredictable. It's messy and frustrating.
But at least we know this is the road we are on, we know we are heading in the right direction and we know God is leading the way. The rest I guess we just put on our seat belts and see where it takes us.
Pray for Lily, for her eyes, for her seizures, and maybe for her mama.

The Realist gets Optimistic?

My Dad always says "disappointment is my only friend". He always says it with a chuckle of course because my dad always seems to be joking. I am sure it is surprising to know not only did I get my dutch looks and nose from my dad but I also got his ability to laugh at times of sadness and when someone falls. And when it is totally inappropriate. And maybe a bit of his pessimism thrown in with a joke to make it look like it is not so pessimistic, it is ... what is the word I am looking for friends????? REALISM! Yes my friends, I believe there are optimists, pessimists and realists and only the optimists look at a realist and say oh they are pessimists. But it is not true, us realists are so not pessimists, but the crappy thing is only we know the difference.
Woah...tangent... annnnd we're back.
But I get that whole sad statement, disappointment is my only friend. I don't relate to it. I actually have awesome friends. The best a girl can get. So I don't relate, but I get it. I think I am disappointed 80 times a day. I get disappointed in choices I see other people make. I am not judging them, but I do feel a sense of disappointment when I see things on the news, or hear about someone who did something. And I am sure I disappoint others time and time again. It is a fact of life and some people find comfort in knowing disappointment. They know it is always there and will always be there. Again, I don't love disappointment, I just am very well aware of his presence and don't shudder when he comes. I, well, I usually chuckle at his entrance.
But I am not here to talk about disappointment and negativity and all those things that make us warm and fuzzy.. I actually wanted to talk about things that made my week so much better last week. Bright sunny optimistic things!
I saw hope in our future. I saw a twist on what I always thought just was.
I saw (not personally but via the internet) that Karly got to go to prom! Karly at 16 who has CDKL5 just like Lily, got to go to prom with her brother. She looked gorgeous and had a smile to light up the room. Karly's mom thought Karly would never go to prom, so her brother made that a reality for her family. I too thought prom was just another thing we had to count on not happening, but now I don't feel that way. I know Oliver is probably not gonna be the one to take her considering he will still be in elementary school when Lily is in high school, but I have confidence that it now isn't a never for us anymore.
AND last week I went to watch my niece Skylar pole vault in her high school meet and I watched a set of parents who sat there for hours waiting to watch their blind daughter pole vault. Yes, blind daughter pole vault. I think on an interview they did of her she said she had 20/400 vision. I don't know about you but I had a hard time seeing at 20/40 and got surgery to fix it. All I could think about was her parents, because as much as I hate to admit it I am far closer to being a parent of a high schooler, than an actual high schooler anymore, and I watched how proud they were and how I can only imagine when she was little and was diagnosed with a severe visual impairment, I imagine the lists they made of all the things she will probably never be able to do, but look at her now. Pole Vaulting! I was so impressed and inspired by this girl and her parents, they may or may have not been crushed by the news that their daughter had a disability, but it didn't stop them from letting her try things and inspire others.
So while the world may never stop disappointing us, I also hope it never stops inspiring us as well. And I hope everyone has their eyes open to these experiences that show us life may not be what we always think it will be.

Update

We saw a different neuro last week. I met Dr. N when I went into TGen and had a meeting in a conference room with a table longer than my house. I met 4 researchers who were interested in CDKL5. I don't know how we are moving forward, but I was thrilled to speak with these guys and just let them know about CDKL5 and know that it could be something they want to look more into. I met Dr. N and learned that he has been researching Rett Syndrome for 20 years! He sees lots of Rett patients here in AZ and I thought, Lily needs to go to him. She needs to see a Rett Dr. considering no one seems to have much of a clue about Lily and CDKL5 here in AZ, at least a Rett Dr might have more of a clue about CDKL5. So we see him. He was kind, interested in Lily, let us know of some research in the works, did some blood work (that I was thrilled to have done, an x-inactivation test, I will follow up on that when we get results back) and then he told me we must stay with our neuro as she is the best with epilepsy, but he would still love to occasionally see Lily and learn all he can about CDKL5 and let us know of any trials, or research he feels may be of an interest for us. I had a little more faith in the appointment that it could help change our now, but I am comfortable knowing that he may be able to change our tomorrow. I like people to meet Lily and then when they read a report, or think of ways to research they will think of her blue eyes and gap tooth smile and think let's do this for Lily.
I am disappointed in her seizures. What's new? I am disappointed her being on 4 meds and still having up to 4 tonic clonics a day. I wanted him to say let's do this and this and waala things would be different. But is it ok, we can't always get what we want. Mick Jagger told us that. I do trust God and I am glad we went to that appointment. I will also go back to our neuro and see if we can't change things again. Something. Never stopping.
I am however excited about an upcoming road trip with my girls in July! Lily has an appointment at our one and only CDKL5 Center of Excellence Clinic in Denver (for now our only!)! It is a partner with the Rett Clinic and there we will see every Doctor you can think of that does/can/will relate to CDKL5. It will be a long clinic and even a longer drive, but that might tell you how much flying with Lily is not happening. We will be flying in June for her Make A Wish and I think that is the most we can do for a summer. So it is my girls, me, lots of music, lots of fun stops, especially in Albuquerque to see one of my oldest dear friends.... she is not old, I just mean we have been friends since the 1st grade. Which was a really long time ago, so yeah she is old too I guess ;)
But we will see Uncle J and Aunt A, cousins J and M and we will enjoy some beautiful weather that is not Arizona in July. I may be nuts, but I am so relieved knowing we are driving and not flying.
We are also hoping to plan a CDKL5 get together with the other families who will be at clinic and those who live in Colorado! I can't tell you enough how excited I am for this trip!
I know this wasn't too thrilling of an update, but I just wanted to share what is going on right now.
We are praying for Boston and sad for these acts of incredible cowardliness. We were so happy to cheer on Team Rett who worked so hard to go to Boston and run for their kids and to have this senseless act happen....ugh.. I pray for the families whose lives are forever changed and pray that they will overcome with strength and courage.

Retraction of the Biggest Kind

I would like to retract my whole last post. I pride or blush myself on my honesty. I find myself relating to others when I am honest. But what is honesty truly? Like say I don't like your dress and I say I don't like your dress, then follow it up with what I am just being honest. But is that really honesty? That is just sharing your rude opinion. It isn't really honesty. But when I say Lily's seizures break my heart. That is honesty. Relating honesty. But when I go on a tirade about a frustrating day, maybe that isn't really being honest. Well it is, it is being honest in the sense of this is how I am feeling, but kids staring doesn't always make me so grumpy. Actually normally they don't. It was like I let insecurities build and threaten me and then I blow off steam and vent in my blog and then cover it up with hey I am just being honest. I didn't like that post. I debated hitting publish post and then regretted it. And you wanna know why I regretted it? Because I knew I wasn't really being honest. See that word again. I wasn't being honest completely. I was venting and when we vent we just go nuts and say things we don't necessarily mean to say. But I am glad I was well aware of my nuttiness and glad at least I was 100% truthful on that aspect.
But see in my gut I knew I wasn't right in my post. I was taking out my "I have a special needs kid" card and trumping others with it. I carry that card in my back pocket and use it freely and I do hate that about myself. I will let myself get into a pity party and want to trump others who I feel don't carry as heavy of a cross as I do. But that is so dumb! Ugh! So dumb. I need to throw that card away. We are not special. Yes our family has different circumstances than others, but don't we all? I remember my friend, another special needs mom, texted me and asked us if we want to go camping with them and I replied, "dang I can't use my typical I can't I have a kid in a wheelchair excuse with you" and we both laughed. Well I assume with both did. I laughed and she said LOL. But that is how I roll. Say no to things that will be too difficult because we have special circumstances. This is something I somehow shed light on (all by myself) and so glad I did. I know each day I grow and learn and if I don't I am loosing out. I am learning every day and I hope to one day know it all and rule the world. Just kidding. I just want to rule myself. Own myself. Trust myself and respect myself. I want to know my limits and stretch them. I want to never be too comfortable and always be willing to do more. Speaking of we said yes to camping this year. Yes STRETCH. HUGE STRETCH.
I am totally off track and wanted to share why I retracted my last post. So....I post this post. My kids are great. They know better than to stare or to ask questions. They aren't rude or nosy. RETRACTION. Isn't God awesome. You think you know it all and then you go to Target (don't judge me and my Target, ps shouldn't I get some royalties by how often I mention my happy place?) with your 4 year old and your 8 year old and you are so busy, stressed and at your limit that you pay no attention to the fact the person that is checking out your lane is a little person. Sweetest guy. I see him all the time. (at Target, don't judge) always makes my day seeing him and how kind he is. BUT I wasn't prepared for what happened with my 4 year old whom I told the world was better than others who point and stare. Let me just say this was the most excruciating check out in a mothers history. I never have a few items either. Oh my gosh. Andi is my sweetness, my love, my helper, she tells him hi, she helps him bag. She makes small talk with him and then there is Oliver. Oliver who says "MOM! MOM!" "Look at that little guy!" "MOM!" "Mom! Look at what his feet are standing on!" "Mom... Mom.. MOM! LOOK!" Oh my goodness. I am trying everything, honey say hi. Yes sweetie, do you need to go potty? Go potty.. Go find another family please (just kidding, didn't say that) I was red, I was flustered. I was dying. Andi finally said "Oliver can you go throw your trash away in that trash can" which sent him away for about 5 seconds and then we are finally leaving and I am dying, I give a weak smile to this guy and as we walk away Oliver says.. "Mom! Dad is way bigger than that guy".
I don't even know what to do or say. God said Kim, oh no. You are not who you said you were. And I said you are right God. Holy crap, you are right.
So then we talk, and talk and talk to Oliver. Andi and I both. We tell him we are all different, just like sissy is different. Some people are small, some are tall. And we go home and read some more Todd Parr. Oh my heavens. Let me just say that was excruciating. EXCRUCIATING. And I am sorry. So sorry for my last post. And so sorry Target guy. We will come through your line again and I promise I will do better. My child will do better. Sigh.
So the day after that experience we go to CHURCH. It is Good Friday and we have something called an Easter Walk for the kids, it explains all the events, acted out, leading up to Easter Sunday. So wonderful for kids and I just love it. After the walk kids are coloring and I am giving Lily some cookies. Then a crowd of little girls we didn't know just stood around Lily, staring. And the first couple seconds I felt unnerved. I felt protective over my Lily. Then in a moment grace washed over me and I knew that if I don't tell these girls about Lily they will continue to just stare and never know. If I don't teach them, who will? So I say, "Hi! This is Lily" and then the questions start coming, "why doesn't she walk?", "can she talk?" and I explain to them simply that she is different and they say "oh" and then a friend comes up to the girls and says, "Oh that's Lily! She is my friend" and at that moment my heart melted. It was mush. Had I stood there being annoyed, or turned Lily from the stares I would have missed that precious moment where Lily was explained and understood by a peer her own age. Oh the blessing that moment was to me.
So I am learning. I am moving forward. I am not going to let myself pull out that card in my back pocket. I am going to be more conscious. I am going to be more graceful. I am so glad that I did write that post, just so the following events could happen in a way that I saw them so differently. God is so good. Be thankful for the uncomfortable situations that help you to know and understand and grow from.
But I never want to relive that check out line again. Ever.

Spring Break ?

Spring breaks are long here in the chandler unified school district. Very long. They go to school for 9 weeks and then take off 2 weeks and 2 days til summer and that is when this whole thing pays for itself, summer break is only 7 weeks. Boo ya. Is that how to spell boo ya? Is that two words or one? I'll take words that aren't words for 1000 Alex.
But yesterday was the last day of our long spring break, then they get Friday off. For Good Friday you ask, Lord no. Yes, but no. It's "Spring Holiday". Then we are back in session til the end of May.
Why such a long introduction to what I want to say? Because I wanted to. I always do. I give way more back ground to a story than an actual story. So there.
Spring break... ahhh break is never a word I think people should be throwing around when you work out of the home some days and have to figure where they all need to go and the days you don't work you work 2x as hard with all three kids in the house together. They fight, yell and break things.
I was able to get care for Lily on my work days the first week because ASU had the same break so Lily's respite worker was able to help out and we put Andi in an acting camp that our neighbor took her to and from for me and Oli went to Nancy's where he always goes. The second week Lily came to work with me, Monday and Tuesday and Andi came Tuesday as well which was really helpful, she is the best sitter Lily can get :) But what I am trying to talk about is the days I didn't work. The days I had all the kids. The days that I felt nutty.
We had appointments to kill one day, a zoo-date in record breaking heat another day, mall trip (I already spoke of), Target trips, pool days (my favorite), birthday parties, daddy driving race cars and lunch dates. We never stopped the whole break. Never. Grandma and Grandpa came from South Dakota on Thursday and it has been so helpful to have them here! I was able to get to work early on Friday and Monday .. so early in fact I am done with my work today and now blogging to you all.
Also during this break I have been trying to track down medical records that I have to say on record HAS BEEN HELL! Hell I say! I won't even bother going into the details of this hassle, just know that pre HIPPA I was able to call MY daughters Doctors office and ask them to send ME her records. Today that DOES NOT happen. Caps are needed. Actually butt chewing is needed, but caps is all I can do right now.
But all this crazy spring break stuff made me come to a realization... I have awesome kids. Like primo awesome. Yes it is a lot of work to do with all of them, but they really are great. Andi and Oli do feed off each other and can be hyper as all get out in a store, or fighting in a store, or whatever, but in matters that matter they are great. And I am bragging and I am gonna say something that people may get offended by and I will apologize in advance for it. Some kids stare. Hard. And their parents don't do anything about it. And it really sucks. And if my kid made your kid feel like a zoo exhibit I would say something to my child so that never happened again. I guess in our bubble of school, church, and neighborhood people don't stare. But spring break we broke the bubble and went places we normally don't go and so I got reminded how normal our family is not.
I know my kids are lucky, they have a sister in a wheelchair. They have an uncle in a wheelchair. They go to events with tons of kids who are "different" than them and they play with them and become friends with them. Andi especially has the biggest heart for these kids and causes fights in Lily's class because all the boys want to marry her. She sees someone different and wants to friend them, hug them, help them. Oliver just usually covets cool wheels and doesn't understand why he doesn't get a "cool wheelchair". We have people of every color, race, religion in and out of our home and they understand we are all different on a level most kids just don't naturally see or understand. Our kids are lucky in this way, I know this and I don't expect other kids to not be interested in people different than them. We are naturally curious. Kids are most vocal about their curiousness and I find it refreshing most of the time. It's honesty in its purest form!
But when you walk into walls gawking it isn't. I had to box out a little kid who was staring so hard at Lily having a seizure I should have gotten a foul. I am already upset at a seizure, another seizure, again and again, she is having them all the time now and yes I get upset about it. I am trying to keep my attitude in check. I am finding my blessings, but sometimes I am angry. I am angry that we can't just have a nice day at the zoo with friends. It turns sad. A fun day at the pool turns sad. I have to click off a part of me that is sad and turn it to happy to be with my other kids who deserve a mom who is not always sad. So I am two faced. I do multitask my emotions and it can make me a little nutty and a little off balance and a little not ok with people staring. Probably way more sensitive than usual. And I am sorry.
I do want to say for the staring kids 9 out of 10 have moms that say "hey don't stare" or "hey she's just like you, just in a chair" (my favorite response I heard by a stranger followed with a sorry my kid just did that smile) so I am not a grumpy lady mad at the world, I am ok with those situations. I was even ok when the kid super loudly said "what happened to her mom?" it's fine. I had Andi stalk this poor little person at a store and I did everything in my power to show her jewelry, clothes, anything to get her to leave this poor woman alone, but despite my hardest effort to distract her, she still went over to her and told her how much she liked her earrings. Phew. But I get it. Kids are kids and that is fine, great even! What I find not ok is how some parents just let us be totally uncomfortable with lasers beaming Lily and I while watching Oliver play in the mall play area. Like lasers that hurt. Like stop. Please. We have no second act. We have no clown car. We are just sitting here. No trapeze show about to start. Just sitting here. And still sitting here.
I know that the beautiful readers of my blog are awesome parents who don't let their kids do this and so I am just complaining, not preaching. Believe me on our outings there are always kind smiles and those who run to open a door for us and I should be writing a whole post on those people, and I am sorry now that I am not. I guess I just hope our next spring break will not fall around PMS and with 2 weeks that may be hard, but sorry it did this time and with seizures so bad and with hormones my emotions were out of whack and I was grumpy and my feelings got hurt and I know I shouldn't let things get to me, but it did. 
I am working on it and thinking next time we go out I should hand out Todd Parr Books.
It's OK to be Different. It really is. 
School is back in session. I have 9 weeks before I become nutty again. Let's enjoy this time.