Monday, April 29, 2013

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.

Tuesday, April 16, 2013

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.

Tuesday, April 2, 2013

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.

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