Thursday, December 27, 2012

Heavy Load .. Apologize in advance


I honestly delight in knowing my positive outlook helps others. I am filled when others say “you give me perspective”. I live with the mission of taking what we get and seeing the good in it and sharing that good. We've been through a lot. Not anymore than anybody else, we all have trials, but I think it is safe to say we've been through our trials. And I am not even saying I am an optimistic person, because I am not. I am a realist. My husband says pessimist, but I totally disagree and call it realism. I think when your heart has been broken more times than you can count; you are always waiting for the other shoe to drop. At least I do. But even as a realist, I still am able to find the good and share the good. I don’t think I would survive without it. I know the light is from God and I am just glad I have figured out how to find it. I know without that light I’d be a wino living in a dumpster. I have that tendency to find a place where my troubles won’t find me and I am so glad I found a light that keeps me from that dark.

But with all that said, last night sucked. I honestly went to bed last night wondering if Lily would wake up today. I think I knew she would, but it didn't keep me from waking up constantly and going into her room to check on her and basically annoy her by waking her up, touching her making sure she was breathing. Her seizures were so bad last night they surprised me. And that is not easy to do after 10+ years of dealing with seizures. After they settled we just sat on the couch, I held her while I watched Parenthood on Netflix while Oliver ran amuck. Andrew and Andi Jane headed up to Greer early so it was just us three at home last night. But my mind started racing, and no good was being found. Yes I was able to snuggle my 10 year old on the couch while she slept. Who gets to do that? But I couldn't help but think she should be up north with her dad and sister planning on going snowboarding. Not sleeping in her mom’s arms because the seizures have been relentless on her body and she is so exhausted a loud 3 year old doesn't even jostle her. Yes I was loving the cuddles, but she is so passed out it probably didn't matter if she was in my arms or in her bed. I had to think about Lily and this disorder that had completely changed our entire beings. So much to be thankful to Lily and who she is, but so much to feel angry towards as well, and I know anger is secondary and it is secondary to my sadness that yes I know life isn't fair, but does it have to be this unfair?

I think about the kids with cdkl5, rett, cerebal palsy, md, ms, angelmans, etc and I just say, really?
I think about the majority of kids with rett and other disabilities and those who have passed away mostly do it in their sleep. Or in a hospice. And I think is this what we are waiting for? A morning she doesn't wake or a long drawn out awful process in hospice. And I think again. How is this fair?

I think about how on Dec 20th we went to meet a Palliative home care team and social work team. I know they are for our good and will help us make choices that only benefit Lily, but I think about the meetings we have coming up where we make decisions that we will place on a virtual shelf and pray we never have to bring it off the shelf and actually put these choices we made during sound mind to action in a time of chaos. I know we are doing the “right” things, the “responsible” things, but then my breath hitches at the thought that we are making decisions no parents should ever need to even remotely think about. These are things you talk about regarding your grandparents or parents. Not good things, not happy things, but in the true cycle of how life is supposed to go, things that are of this life.

So last night after a really crappy night and followed up with a pretty crappy morning, I am not seeing or feeling the light. I am sad. I am overwhelmed and I desire to drink mai tai's on a beach somewhere far away. But because I am a woman of God who knows and truly believes all things work together for the good of those who love him, I know that even these times that I am not shiny and happy, I am still loved and grieved with. And understood for not faking it and maybe even loved a little more for being honest about it all.
It’s hard leaving a post like this. I realize the darkness of it. I realize I am saying things that are only thought about and I am sorry for that. I know that my outlook seems grim, but my heart also knows that we love Lily with a ferocity that is undeniable and we will love her for as long as we get. I will love all my children as long as I get to. No days are promised. Nothing is promised here on earth. We see tragedy happen when innocent kids are sent to school. Life is not fair. Loving others can be the most painful experience we will ever have the pleasure of experiencing. I'm just sharing my heart today as it is fresh right now and things have been brought up to us recently I have been happily blind to. I am sure I can get back to my place of oblivion, if we could get these seizures to chill out. Lily is so healthy. I'd dare to say healthier than anyone else in our house, she kicks a cold faster than any of us. She is a strong little girl. I have to say it's the seizures that keep me in fear. So my praying friends please remember her in your prayers. 

I know people will want to share words with me of love and support and I appreciate them so much, I relish in them. But know I am ok. I am just having a bad day. My heart hurts and it needs to heal, again. My heart is always healing and I’m glad it is able to do that. I get another evening with just my two kiddos and it will be what I need.  If you are a praying person, pray for Lily to find relief. We are used to seizures but when they attack her one after the other it is a lot on her and it is a lot on us who love her.
Thanks for reading and thanks for loving.


Friday, December 21, 2012

Another Year Older... Wiser?

It's been crazy. Like I haven't rested this week until my butt was in my bed by 10pm each night and up and at em at 7am each morning.
This week I became another year older and I pray wiser. I was a lucky girl to celebrate that event with very important people in my life. I also celebrated Christmas with some moms I never would have survived Lily's "condition" without, they have been with us from the very beginning. We got our passports ordered and hopefully will be here by February so the Make a Wish trip will really happen. We watched Andi Jane delight us as she played Mary in our church play. We had a pretty important Dr. appointment for Lily, meeting a new team in an effort, we pray, that will make the future easier for all of us. I am pretty sure we could have used this team a long time ago, but so glad to have this now. I will go into further details later. I just recently got this kick butt computer for my birthday and so I can now solomonly swear that updating this blog will come back to a priority. Even if no soul reads it, I need this for my sanity and I like to look back at this crazy life we live and see the seasons we have all weathered. I feel that 33 was a blessed year for me. A solid relationship with my husband, new friendships and amazing old, a family that I know I am so lucky to have and no drama and I owe all that to my relationship with Christ that I have continued to deepen and feel so amazing about. I spent so many years "knowing" God and am inspired to spend the rest of my years Loving God. Living for God. I know I have many friends from all walks of life and I know not everyone agrees, but the important thing is I am not that insecure 17 year old girl that withheld anything from others if it made me look less cool. I am now a 34 year old woman who is cool by the standards that matter to me. But I will never be that judgy christian so many nonbelievers think we are. I have walked a pretty muddy path, I have many things I wish I chose not to do, I don't live with regret, I am thankful for that mud that got all over me because with out it I would never know what it feels to be clean. I desire to live like Jesus. I want to invite everyone to my table. I want the unloved, the sad, the sick, the dirty to know they are more worth than gold. I want my life to be a reflection of the one who first loved me.
This has been a great year, and no matter what this next year brings, it will be a great year as well. I am learning life isn't about what is dropped on our door step, it is what we do with it once it is in our home.
This upcoming year will be a year with vacations of a lifetime! A trip to NYC with my mama to see all my CDKL5 mamas "sisters"! A Disney Cruise with my most awesome hubby and kids. And maybe something else, who knows. I love the anticipation we have with each new year. Wondering how it will be. Our baby will be 4 soon and it feels like we are embarking on a new world of parenting. Our baby is 4. I have gone 10 years always with a baby under 4 it seems. Now there are no more babies. It's weird. Sad, but happy. But isn't life just like that. Happy with one thing, but it makes you sad on the very same hand. New things make us sad for the old. At least me anyway, I am an old sap.
So anyway, cheers to a new year! Merry Christmas from us! The crazy households of the Nordy family!



Friday, December 14, 2012

Praying for many today


This morning was a little different from the others. For starters I woke up to Oliver’s cute face. Oliver has been having a really hard time falling asleep in his new room and last night fatigue won out for me so when he came into our room and asked to cuddle I said “come here” and rubbed his sweetness until he fell fast asleep.  I woke up, saw his face and kissed it lightly before I rolled out of bed with 2 hungry, so excited she finally woke up so we can eat, dogs following me downstairs.
I catch Andrew before he leaves for work bright and early I gave him a big long hug and told him I am praying for him. We got real backed up at work and he is putting out a lot of fires are trying to manage to finish these jobs in half the time. He said thank you and kissed me goodbye.
Then on to getting Lily ready. She is always the first I get up, dressed and fed before I wake the others. This morning I sat on her bed with her. Her mood was gentle and sweet. She wasn’t whiny or sad. A lot of times in the morning she is a bit on the grumpy side, but not today.  I asked her how she slept and if she approved of the outfit I picked out. She was quiet which I took as I did well. I sat her up to change her shirt and she leaned into me. I took that as hug time and there we sat, I’d say for a couple minutes. Lily doesn’t generally hug. She will cuddle on your lap but body to body hugging typically leaves her squirming. But there we sat, her cheek against my shoulder and my hands rubbing her back. I decided to pray with her for her day and rubbed and kissed her some more. Then I said Lily we better get you ready for school and went about our morning in the usual way.
Next I holler up to Andi Jane if she is up, she was and was getting dressed. She came down stairs and I, in the mood for hugs, tackled her with a big hug that she wasn’t necessarily ready for or wanting. I said we always have time for hugs and smiled at her. She giggled. I walked her a few houses down to school and when we parted ways she hugged me hard and gave me a big kiss.
Then I woke up Oliver and he was the grumpiest of us all today, but in true Oliver fashion a couple tickles and he is over it before he remembered why he was grumpy in the first place. He got in the bath, dressed, ate a little and we were out the door. While standing at the front door of Ms. Nancy’s house we knock and Oliver squeezes my neck so hard. Like a hug that cures all type of hug and held tight til she opened to door and we parted ways.
I drove off to work thinking, I held each one that is my world tight today and if anything happened I can say I had a special moment with each and every one of them.
Then I got to work and saw a breaking news email. Said approx. 20 kids killed in school shooting (it was early, not a final report) and I said that can’t be right and read. And cried. And prayed. And I prayed that those parents had that kind of morning I had today. If nothing else I prayed they hugged their precious child that they assumed was safe in their school as they said goodbye. Please God, don’t let their morning be like some of mine where you just want to do it all over again the next day. Please God don’t let it be because they won’t have that next day.
Oh God my heart is broken. Empathy is crushing me today. Your ways are not always known and finding good amongst this much pain seems impossible. I have no words to say if I could to these families. I just pray that your will is good and you are near the brokenhearted and crushed in spirit, please let these families know you and see you in these days that the thought of leaves me breathless.

Monday, November 26, 2012

Thankfulness, forgetfulness and more thankfulness

I have been sharing all the things I am grateful for during this month of thankfulness and it has been a real eye opening experience. Some days I struggled with what to give thanks for beyond God, my family and friends. I was able to do some stretching of course some days, but other days I didn't feel thankful for much. I know that sounds awful, but I spent part of this month grouchy. Moving sucks. I am not an organized person, but I 99% of the time know where I place my stuff, but moving has given me not even a 50% accuracy rate on finding things. And I am not talking about socks here, I have lost my debit card and had to get a new one which now requires me to renew everything I had linked to, which is a lot, and a $100 Lowes gift card. That guts me. We could really use that card and I am 50% sure it will show up again, but it kills me I lost it.
So to say I have felt frazzled this month would put it lightly. And it is nothing I want help with, I need to put my stuff where I want it to go therefore I am back to knowing where it is 99% of the time again.. I just am not finding the time with work, holidays, kids messing everything up before they are ever put in their appropriate place oh and the Christmas decorations we need to put up and gifts we need to buy. Oh and the passports we need to get. Sigh. Sigh. Ok so this is why I was scrambling from time to time to say I am thankful for the sun that so gloriously rises each and every morning and for the beautiful faces I get to see smiling at me each morning.
I lost track of what I was thankful for and this month each day, even when I didn't feel like it, I was forced (and by forced I mean I placed an expectation on myself and to all of facebook and Lord knows those are expectations you cannot deny!) to count my blessings. This has been the most eye opening and wonderful way to look at life. Am I normally happy and easy going, yes, totally! But I am also grouchy and get annoyed easily so this was the best exercise I could do for myself and shouldn't stop at December.
I started taking things that were annoying, like say framers outside our window this morning pounding away at 6 am and turned into gratefulness that we will soon have neighbors and not just neighbors, but ones with a 7 year old daughter that Andi already met and played with.
I got my eyebrows shaped for the first time in my life, back in my modeling days one dude went nuts on me and since then I have just been plucking the strays, anyway I got waxed and apparently had a reaction. My forehead was red with white heads all over it. It was atrocious! And I will admit my skin is and has always been my biggest vice. Again in my modeling days I would get reprimanded for it. My grandma would always ask me why I was broken out. Zits have put me in some real downer moments in my life and at nearly 34 they are still ever present. But this might have been the worst break out I have ever had. BUT as bothered as I was, I wasn't that bothered. I felt reminded that my self worth isn't in my beauty. I spent many years, young impressionable years, holding my self worth in how I looked and I am no longer that girl and it took that reaction to show me that yes I have broken out skin, but I am still a cool chick. A cool chick that could use a little make up, but none the less... a cool chick. At least I am to those that matter and that is all that matters.
And this morning Andi Jane disobeyed me with turning on TV before she was dressed for school. She got sassy and I had to walk away. As I was getting dressed I thought about all the years I had prayed God would make Lily throw me a temper tantrum. Something showing me she's in there and has a voice and it never happened. So I knew deep down that even though I was annoyed with my Andi Jane's choices and the way she was carrying herself, I was also thankful that she has a voice, that she has an opinion. So I went downstairs to her and held her hands and said Andi Jane, even when I am upset with your actions, I still love you and am thankful that God gave us you. Well she just hugged me harder than ever before and I could tell she was thankful for my forgiveness. Our morning went on so much better and I sent her to school knowing I am not going to set her day up for disaster.
I am not bragging because most mornings our days does not go off like that, I will yell and she will pout and I  send her to school mad and I feel awful all day. But today that didn't happen because my mind grasped the blessings I have and it changed our whole morning. It's changed my whole month. I am thankful for so many big things and yet so many little precious things that I just don't ever want to take for granted.
Like yesterday in the park. Lily couldn't ride her scooter there and play on the slides, but I was thankful that we just got to sit and hold hands.


 

Tuesday, November 20, 2012

Changes

There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. 
I have so much I want to share and write about, but my time is short. 
We are almost done moving. A few things left in the old place we have to gather and then we will finally get to work on the new place. It's been crazy. So much to do. So little time. 
The place is incredible though. Bus gets Lily, we walk Andi to school. Lily's room has so much room! She gets bathed and dressed in there and there is still room for her chair and other equipment. Her door doesn't get dinged because the wide doors and hallways are bigger than her chair. There is so much room and the kids aren't all in one room playing when Lily is resting. This move was so needed, but it was hard to do. 
So many memories in one place. Heights marked on the walls, memories all over the place. It is always bittersweet to be out with the old and in with the new. 
It seems like we are venturing into a new season of life. Baby stage is gone with Oliver and Lily is now 10.
Andi Jane is going to be Mary in our church play on December 15th and had her lines memorized the day she got the script. She wants a laptop for Christmas. The baby days are gone and my heart aches a little bit for what will be no more, but excitement also for the new memories we will make in this new home.
Andi Jane so badly wanted to be Mary and I told her she had to ask Ms. Ashley (play director) and she said "I already asked God" ... well sure enough a few names go into a basket and out comes Andi Jane's name to be Mary. That night in bed after we read the script she said "you know I got to be Mary because I asked God" I said "yup" and she said "I like that God, he's a good guy". Oh she fills me.
Lily got a Make A Wish! They called and asked if we had our passports, I said no and they said get them because we are going on a Disney Family Cruise to the Bahamas this summer!!! This is beyond thrilling because it is something our family would never be able to manage and now we get to do this. Lily will LOVE this! Warm water, warm sun. Everything she enjoys! We are so excited and have got to get our passports!
I feel I should elaborate on the whole Lily got a Make A Wish..... I would have never even asked for a M*A*W in the past but as Lily has gotten older it seems our battles are bigger that we are fighting. The biggest issue, which has always been, is her seizures. Lily has the worst type of epilepsy a person can have and when you have seizures that are not controlled no matter what you do you are given the worst odds with sudden unexpected death in epilepsy. Not something we like to discuss, not something I even dwell on. But it is a fact. And that fact was enough to qualify Lily for a Make a Wish. And with the growing Lily is doing we figure a vacation like this needs to be done much sooner than later. So that is how Lily qualified for Make a Wish and this is why we have decided to even request it and are using this opportunity to get a family vacation while Lily is still light enough for Andrew and I to still carry her. 
Our last neuro appointment didn't go as I was expecting so we are thinking of taking Lily to the Rett Clinic in Denver, CO to see Doctors who see several other CDKL5 kids. I don't even know if anything will change, but it would be nice to see someone who knows other kids with CDKL5. It would be nice to make a 5 year plan with Lily because we are coming up to some changes in her life physically and we need to make some plans. The scoli appointment and then neuro threw me for a loop and I think we just need to see some doctors who don't just say well she has Rett syndrome there isn't much more we can do. Every note Lily has says Rett, no one here knows anything about CDKL5. 
Anyway... I am going to try to keep up better on updates, I am soon getting a computer and and desk in my room!!! Maybe then I will post so often you'll know what color toe nail polish I am wearing! Ha! Like I polish my toes.



Friday, November 2, 2012

Update from Scoli Clinic

Unfortunately I heard what I knew I would hear.
Lily went from 23 degrees to 45.
We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.
Got rx to go back to wheelchair clinic, I called to schedule, but gal was out so I'll schedule that next week.
I just love this Dr. He is so wonderful and kind and caring.
He knew this was sad for me. Surgery is a definite, just not yet, but I'm sad. He said it is a neuro type of scoliosis and there isn't much to prevent it.
Her hip needs to be watched.
Her growing bigger is the enemy. This is so heart breaking on so many levels. We all say we don't want our kids to grow up, but when growing hinders the quality of your child's life, it is a whole different level.
I'd appreciate that pause button now.

{Sigh}

The lump in my throat is big and invading. I have a lot to do right now. I have no time for tears. Action only. Cruise control set.

Oliver's tonsils are due to come out on Monday at 9am. He has been sick all week with yet again another acute case of tonsillitis. These things need to go and throw them away. He has been miserable all week and will be again all next week, but then I pray he will be better for good.

Oh and moving. Got the keys. Got the house. I should be happier, but so.much.to.do.
I will smile and pop the champagne when I am finally relaxing in the new place.

Promise.

Keep us in your prayers please. I am stressed about a lot. I know I honor a good God and he will see us through all this, but the control freak in me is resisting his help.

Thanks friends for keeping up with us. Your comments mean so much to me, I love hearing I am not alone in this journey.


Tuesday, October 30, 2012

A Comb and 7 Cents

Ever see Stand by Me? You have to have seen Stand by Me! I love that movie. Just recently it was on Nick at Night and we watched it with Andi Jane. She loved it too. How could she not. Such a great movie! But as I watched it I paid attention to things I didn’t as a kid, of course. Kind of like the first time I saw Grease as an adult and thought, holy crap my mom let me watch this movie… over and over again!? But I digress; I watched the movie and paid attention to Vern. Cute Vern with the buzz top that brought on this big adventure a comb and 7 cents, a comb for hair that he doesn’t even have, and 7 cents. We all laugh at the irony of this fact. You are going over night with friends on this huge adventure. An adventure bigger than anything they had ever done in their 12 years of life and no one brings food. Some bring some money and supplies, but Vern, Vern brings a comb and 7 cents. And maybe the reason I take so much notice to this kid is because I am this kid.
 I am a 33 year old (for a little while longer at least) woman, wife and mother of 3 who brings 7 cents and a comb on my life adventures. I say more often than not, wish I had some wet wipes. Crap I don’t have a diaper. Lily is 10. There has never gone a day she has not required these two items. Yet more often than not, I don’t have them with me.
I make sure Lily gets her meds 2x a day every day. Yet I can’t remember my thyroid pill I have been taking for over 20 years each morning.
They threw a wedge in my plans and rx Lily a med only for night time. Last week we went up north and I remembered her daily meds, but forgot that blasted night med.
 I can go to Target 4x in one week and still end up running there on Saturday, the day of a party to buy a gift.
People say I handle my life so well. They say “I don’t know how you do it” and I say. “I don’t!” I don’t do it. I just manage to scrape by. I scrape by with a comb and 7 cents.
This has been the craziest time of my life I think. Closing on one house and trying to fix up the old to sell. Thinking of boxing up everything, yes thinking not actually doing, planning a garage sale on Saturday, helping Andi prepare for her co-joining bake sale that day. Helping with a project at church (which I am totally excited about helping with) oh and preparing for Oliver’s tonsillectomy and adenoidectomy on Monday amongst the moving and such.
Oh yeah and Halloween is tomorrow. I have to take them trick or treating.
 Lily has an appointment with orthopedic on Thursday and I am more nervous than I put on because I know her scoli has gotten beyond manageable and we will need to do something this appointment. Plus her wheelchair is pathetic and she needs to go to wheelchair clinic.
 I am breaking out because of all this stress. All this crap I am trying to do with just a comb and 7 cents.
But last night I read a blog about a precious girl, a girl whom we have never met but lives a parallel life to Lily, we have friends in common and even the best pre-k teacher (in the world) in common and she is hanging on to life in hospice. Her family is trying to scurry up all the hugs and kisses they can get from their 7 year old daughter in these last moments with her and my heart breaks.
I look on the news and my facebook feed and see people’s homes washed away. Lives turned upside down by mother nature, and my grandpa, the only living grandparent left and I hear stories of how he can’t remember everyone’s names. His mind is a jumbled mess and one congruent thought is hard to manage.
So today as I worry and stress about my inability to micro manage my life, I have to let it go. I am not who I want to be. I am never going to be a Pinterest perfect mom. I may always just survive my life and never perfect it, but I realize the things I do have are here now. They may all not be here tomorrow. So I urge you to pray for those whose homes are devastated, I ask you to pray for the nursing homes with people trying to remember yesterday and I ask you to pray for this precious girl and her family. I pray that you ask God to place his ever loving, precious hand on their family and give them the peace they need right now. And count those blessing of which you do have. It isn't always easy when you feel ran down, but we will always be blessed beyond more than we will ever know. I read about friends of ours who moved their family to Haiti on a mission for God and they don't have hot water to bathe in. Hot water is a blessing! Sending Lily to school today was a huge blessing. My husband and baby boy coming home today is a blessing. My in-laws coming to help out these next few weeks is a blessing! We have so many blessings, even when we don't see them, they are there. Count them!
 You may not feel so perfect either and that’s ok. I have a father who loves my imperfections and I know he loves yours as well.

Tuesday, October 23, 2012

Harsh Words

A friend posted this link on facebook CLICK HERE and that friend isn't even a special needs parent friend. Just a typical parent who has compassion for others and his ears sting as well when hearing the word retard in a negative way.
I am not going to go all ape poo on the word and people who use the word and definitely not going to talk about politics. I have read some beautiful blogs on not using that word and I would never be a cut above what I read and I have no desire to tantrum about something I have done a few times in Lily's 10 years of life.
All I want to say is a few things.
I grew up with my brother who has cerebral palsy and is in a wheelchair, has full mental capacity, yet his body does not have full capacity, so the word was used at him ignorantly. Inappropriately. Ignorantly. Oh did I already say that ;)
The word had never sat right with me, but I used it when I was younger. I admit it, I did. But I was more of a well they are all jumping off the cliff, I should too kind of kid. But every time I said it, I felt sick. I am thankful for that conviction. I wish that upon everyone. My brother rode on a bus with kids with that MR diagnosis. I knew kids with that MR diagnosis. I knew better. I deserved more than a sick stomach, I needed a knock on my head.
Then I became a mom to a kid with a neuro disorder. Although the word was never told to my face, I found it. It was written as commonly as the sky is blue on almost every record Lily has. Severe Mental Retardation. How do they know? She never spoke a word to them. Oh that is how they know.... or rather how they think they know.
I found that word one day on a sheet of paper and the wind was kicked out of me. One word. Although it wasn't bold and in italics it might have well been because it was the only word I saw.
Then I go hang out with some friends and they tell me about this retarded kid who sold them shoes, I ask oh really did he have down syndome? "No he was just stupid". Oh. Ouch. My gut ripped.
I used to be overly sensitive to the word and would watch people say it in front of me and apologize, or they would say that is so re...stupid. And I would feel dumb for being so sensitive. Like it was me keeping them from talking freely.
But now things are different. Wanna know why? Because I have had some years to process that diagnosis. I've had a few years not to toughen up, but to change perspective.
I feel sorry for someone who says things like that Ann Coulter twitter quote. I feel sorry for her because she has no idea what it is to love someone who finds a kiss of the cheek a highlight of the day. To love a child who laughs at a gentle breeze on her face. A bumpy ride in her wheelchair can put her into giggly hysterics. A child who will never understand that people can be bad. A child where her world is safe. A child where no one is a stranger. A child who will never know regret. A child who will never judge others. A child who has no prejudices. A child who lives happily in her safe world with people who would run to the moon and back just to see her smile.
Ann Coulter is the one to pity. Not Lily.Certainly not me. People who find that word necessary to describe their pen that ran out of ink as retarded. Those are the people I pity.
So go ahead and continue using that word. Fine by me, because I know what a treasure I have worth far more than any gold and her name is Lily and she has a medical record that says she is severely mentally retarded, and she is and will always be the best gift life has ever given me.

Saturday, October 20, 2012

Remembering importance

I'll be honest, it's been a rough week. Lily has been having up to 8 good size seizures a day. And uncoutable little ones. Finding relief seems impossible and I had a mini breakdown. No worries, I have them quarterly. I have found the old bitter me pop up and like those gopher games I have to hit her on the head to get rid of her. But today is different. Seizures aren't, but today is. Because today Lily and I sit on a front porch swing in one of the most beautiful places I know and she rocks. I kiss her she laughs. The wind blows her face ad she smiles. I know that dispite all we can't change, the things we do make all the difference in her quality of life. Our job is to make her time on earth as wonderful as possible and that fact has never been more clear to me than right this very moment. I write this for nobody but myself. A reminder back in the real life of what is most indeed most important.

Tuesday, October 16, 2012

Updating

So much to say, so much not to say. Ever have an inner tug of war going on in your brain that if you speak one minute you'll say one thing, but wait a whole nother minute and you will stay something totally different? It's like trusting your evil twin to write and then taking over and having your sweet self speak.
Do I make any sense? Ugh.
I think I am just working off a really full plate. Every time I eat something off that plate and it is gone something else gets stacked.
We finally got everything submitted to the underwriter and it is like holding your breath just waiting for that final "you are approved" email. I just about gave them everything from the paper trail of my birth starting from my parents first date. Short of giving them our first born, I don't know what else I could do for them. I am optimistic the email is coming and soon. I just want to exhale.
And because we didn't like the ridiculous pricing of the options on the home we went standard with most things and plan to DIY it come closing. Ugh. We will be happy we made this choice I am sure. Next year sometime. In the meantime it is talking our faces off on wanting real wood floors but wanting the prices of tile. Wanting wood shutters and wanting the price of mini blinds. It's what color in what room. It is like Pinterest overload to were I dream of colors and floor samples. All exciting stuff. I love that we get to move. This is our dream home. I never imagined us ever in a home bigger 2,000 sq ft. I am not complaining, I am just overwhelmed. I want a bigger budget. But don't we all. These are first world problems and I know how fortunate we are. I just want to hit fast forward to Christmas day and us sitting around our tree in the new house with this all pretty much behind us.
Andi and I will be meeting the principal at the new school and getting acquainted over there. I have butterflies for her. I hate pulling her out mid quarter, but she wants to do it. It will be so much easier for me, but I just can't imagine switching schools and in the middle of the year. This coming from a girl who went to the same elementary school, junior high and high school. I graduated high school with kids I graduated Kindergarten and 8th grade with.
But Andi at the age of 7 is a far cooler person than I have ever been nor ever will be. I know she is good.
Lily stays at her school and will be bused the same as usual. This I am grateful for.
Andrew and Oliver are heading to South Dakota for his Grandma's auction of her stuff. While he is away my mom and I am throwing a big 40th birthday bash for my brother and sister. We will wear costumes and have a great time! I hate to go without Andrew though :( We have been on fall break and by we I mean Andi and Lily. I have no break. I still work. We got a new gal to help with Lily on my work days and she was great those first two weeks. Unfortunately this week we had a miscommunication and I didn't have care for Lily, but Andrew came to rescue Monday and today Lily is my co-worker and she is a fine one at that. She doesn't gossip at the water cooler, she doesn't talk my ear off, she does require me to feed her, but considering all that she doesn't do I think she is just fine. :)
Although I should share that at 2pm she is on seizure number 7. She is taking turns from 1 minute long hard tonics to 5 min long less abrasive complex partials. I have tried to come to peace with this. I have fasted, I have prayed, I have asked for wisdom and for the most part I am much more accepting of it is what it is, but I can't deny the little crush in my heart for each one I witness. I know she has them daily, but I am sitting next to her, I catch each one. I see each one and a part of me wants to kick the seizure monsters butt.
But we're ... boom just had her 8th. Here is the silver lining, she is with me. Not a new caregiver. We are going to have to make changes. Seriously.
Back to superficial stuff that makes up our lives.
We are having a garage sale on November 3rd and Andi has been planning her bake sale for weeks now. She has the items she will bake and what prices each item will be. Although I did have to tell her most people will not buy a $2 oatmeal cookie. Wrong neighborhood.
Oliver has his tonsils out (not so superficial, my heart is torn up about this) on November 5th.
His tonsils are enormous  they almost touch. X-Ray says so are his adenoids. They all gotta go. I am convinced he will sleep and even eat better now, but we just survived this with Lily last year. I know how miserable it is and so sad my tiny little man has to now endure this. And then my poor Andi Jane has to watch another one of her siblings get special attention.
I am convinced she will break her leg just for some special medical attention.
Ok hubs is on me to wait for it... look at flooring. I must go. Not even gonna proof read. Not too many red squiggly lines so I assume I'm good.

Tuesday, October 2, 2012

Shedding Some Lights

My heart quickens when I realize I am ready to post on this subject again. Well I already did post on it, just on wordpress to an audience of none.

Linking it here changes things and makes my tummy flip flop.


I first wrote this http://lilyannablu.blogspot.com/2011/01/2010-in-depthmetaphorically-of-course.html


And then this http://lilyannablu.blogspot.com/2011/06/to-share-or-not-to-share_23.html

Then I never said another word. Some may think good, that doesn't need to be discussed and if you feel that way I am sorry for this next post. But many asked me to share how we survived and I promised to do so and just never felt like I could until I 100% believed what I wanted to say.
God gives us trials to go through and yes they suck and yes we feel like throwing in the towel, but if we don't and we dig deeper and find our way out we are so much better for it.

So here is the post I wanted to share:
http://calmamongstthechaos.wordpress.com/2012/08/07/shedding-some-light/


Thank you for letting me share my heart. I have taken this blog on a long journey of this crazy life and I feel like we are moving to a brighter place. A new beginning of sorts for me. I have made some changes in my life and have been following God much more closely than I had ever before and he is taking my heart places I didn't expect. I am excited to see where we all will end up. Thanks for following this ride and sending me your awesome comments that make my heart swell. I feel like although this is just a blog, a lot of good is being done through it and I just knew I had to share this post if I want to continue staying honest to myself.






Monday, September 24, 2012

If you want to know how my heart beats and why, here you go.......






Tuesday, September 18, 2012

"I Don't Know How You Do It"

Sitting around a table around 10:30pm on a Friday night with some amazing women in my life we talk about kids, and about being moms and the struggles and triumphs we go through. As I listen to some stories my heart swells and I wonder “how does she do it?” Then one mom says “I don’t know how you do it” addressed to me and I answer my honest answer “I have to and you all would do it too.” Because I know those moms at that table would do it and probably better than I do. They may not think so, but I know so. We always wonder how we would do in a different place. With a different struggle than the one we have and we always sell ourselves short on how we would manage it.

Isn’t life so much about learning along the way? I mean we all think we know it all at 20 and others will say we don’t, but we honestly think we do. Then we look back 13 years later and think, oh Kim you had no idea. But I love that! I love that I have learned by living. I have learned by mistakes and will continue to learn to the day we take our last breath. At least I hope so!

When we become moms, we have expectations. We have plans. And most of the time it isn’t as we expected, planned, dreamed. I thought Lily would be in dance and sports, sweet 16 and prom. I thought we’d walk her down the aisle. But those things won’t happen. Not in the way I pictured them to anyway. But when Andi Jane was born I had expectations for her as well. I had expected her to take over all those plans I had for Lily and for herself. At the time I wouldn’t have admitted to that, but looking back it is very clear. But Andi Jane didn’t like dance class. She picks flowers in the outfield, she isn’t the quickest in her studies and she’d rather spend 3 hours getting every word to a song correct and film herself sing it, off key, than do anything else. With Oliver I saw a dark hair, dark eyed boy, that looked like his dad. I expected him to have a chill out mentality and didn’t plan on him getting upset over a piece of his yogurt lid still stuck on the container. I didn’t expect him to be so hard to put to bed I certainly didn’t expect him to want to listen to Taylor Swift “We are Never Ever Getting Back Together” over and over again. I didn’t expect him to be as hilarious as he is. Thank the Lord for that one. My point is I love that Lily can giggle and my heart is full, I love that Andi Jane wants to sing all day long and I love that Oliver wears a Spiderman costume three days in a row. They aren’t who I expected and I thank God each day for that.

Many years ago I didn’t feel like that. I did NOT live like that. I felt cheated. I felt God dealt us a bad hand and I felt like a martyr. I would listen to other moms ask for prayer for their kids to get tubes in their ears and I would say (in my head) ha! I’ll pray when they have brain surgery. I remember getting so mad at a mom one time at music therapy that said I should count my blessings that Andi (at a very wild 2) was able to express her needs and wants. I just smiled but in my head I said you should be grateful your child who needs music therapy walked into this place and talks to you! In my head I was a victim. I was ungrateful and I was downright nasty, although it was in my head and never spoken out loud, it hardened my heart. It was a awhile later I was watching the news and a mom was talking about her daughters sudden and unexplained hair loss which they found out was alopecia and the mom was doing all she could to help her daughter with wigs and I even think she went on to help other kids as well. I don’t remember the exact story, what I remember is that I thought I would have felt apathy for them but I didn’t. I was empathetic towards them and thought if that was Lily’s only problem you bet I would do all I could to help her to live a “normal” life, one where kids weren’t taunting her for her for being different. That was a real turning point for me. I totally changed my attitude. The lights came on. I realized yes tubes surgery is a big deal for a family who has been told their child’s hearing is impaired. Yes unable to express needs is a huge issue for a family. I realized my jealousy towards others was only hurting me and things changed.

I have met so many families along the way, some with kids more severe than Lily and I think to myself how do they do it? I think it is so common for us to think of others who have it differently and think I could never handle that. But you could if you had to. We all have struggles, we all have hurts and we all do what we have to do for our kids. So thank you for thinking of me and someone who can handle it all, but I am not. I handle what I am able to handle. God picks us and what we will carry. He knows we may not like it, we may fight it, but in the end it was the very thing we would never change because it made us.

Thank you God for loving me enough for placing Lily in our hands! Thank you for loving me enough to give us Andi Jane and Oliver. Thank you for the struggles our marriage had to go through so we could come together like we have. Thank you for changing my heart and giving me callouses on my hands so heavy things are easier to carry.



Monday, September 17, 2012

Vote Please!

Have you voted yet? Please do! We only have til Wed the 19th! We desperately need money for research and if you don't vote I'm gonna have to hit you up for your real dough! :)
VOTE HERE!!!!!!
OR click on the link on the right side of the page Chase Community Giving search for IFCR
Please and THANK you!

Tuesday, September 11, 2012

"Write it on your door frames"

Deuteronomy 6:4-9 Talks about imprinting the commandments on our hearts, impress on our children, vs9 says Write them on your door frames of your houses and on your gates

We are moving. I have made slight mention to the fact recently, but it is getting more and more real and I think it is actually going to happen sooner than later. So I will speak of it a bit more. Plain truth we have beyond outgrown our home. Now I hate saying that. I am fully aware of people living with 2x the people in half the space that we have. I should just say we have 1st World outgrown our home. If the girls could share a room I would have them do it in a heart beat. But they can't. Lily is a poor sleeper and would keep Andi up all night and I can't imagine Andi Jane and Oli bunking up. They'd never sleep. They are hyper kids who love each other one minute and hate each other the next. So again 1st world problems. I have no desire to bunk those two. Plus they are 4 years apart. Andi Jane is on the verge of needing a bra. Need I say more?
So we found a model home that I thought would never be able to be our home. Turns out it can. We won't be paying much more than our home now and it is almost 2x the size.
Lily will have a master suite on the first floor with her own bathroom in her room and a large closet to CONTAIN a lot of her equipment. I honestly can't imagine living in a home with enough space for all our stuff. Wow. It sounds amazing and scary. I don't like change. I lived in the same home from kindergarten to senior year. I cried my eyes out when we moved to a much nicer home. It isn't pretty things that get me, it is nostalgia that I love. I am dreading the day we walk out forever of the home we brought Andi Jane and Oliver home from the hospital to. The house that I have all the kids height recorded. The house that housed lots of birthday parties. Lots of friends. It is the place our marriage crumbled and the place we restored it. It is a house that held a young families 8 years of memories. 
And as I am sad to see an end, I am thrilled to see a future. A new start. A new neighborhood, a new grocery store and a new school for Andi Jane. A balcony and a view of the superstition mountains. Sun sets outside and neighborhood block parties. (ok so that last part is my part of dreaming something into action, in our current neighborhood people only talk outside while A. watching a house burn to the ground  B. a neighbor commits suicide  C. a young neighbor manages to drive his car not only into one fellow neighbors home, but two homes) So as we embark on this new home, a dream home for us, we decided to make sure we knew how this happened and to whom it was all possible. We wanted our home to be blessed from inside out. We wanted to bless the workers who work so hard and to bless this family that will spend their days and night in this home for many years to come. So we "wrote it on our door frames" God bless this home.




Wednesday, August 29, 2012

10!

How can she be 10? 10! My baby, my angel, our Lily is 10. Wowzers!
We started celebrating on Saturday with nearly 60 of Lily's closest friends. Our house is under 2,000 sq ft. :)
We swam, we bounced, we ate. I like to think a good time was had by all!
We invited Lily's friends, most she has known since she was less than a year old and some new ones as well. We had family, our friends who are like family and well... a house full! Approx 30 kids and their wranglers. It was a great time. Next time we have a party we will be in a much bigger and frankly boring house. One where people aren't crammed next to each other forcing conversation upon each other :) I like our small house and know I will really miss it when we move come November.


My laptop is on her way to hospice and the amount of time it took to upload just this one photo tells me that this will be the only photo I upload. But I am uploading to flickr so cuise on over there if you must see the party of all parties where the mom hardly took any photos. Hey I was busy.

Lily's actual day was Tuesday the 28th and she had a half day at school, when she got home we all went swimming and later had more cake.

I could write all about these past 10 years, but I have done that a lot. I could share my hurt each birthday, but I don't want to. I just want to say Lily is an angel. She is a gift. She is the best teacher I will ever know. We are blessed to get to share each day with her and I am beyond the moon being given the opportunity to being her mama.
If can't see God in the beauty that is Lily, than you need to change the way you see.
Happy Birthday Lily! Praying for many, many, MANY more happy days with you!

Love you!

Monday, August 27, 2012

A Different View

Life has been a tangled mess leaving me feeling unable to stop and able to take a full deep breath. First Lily ran out of her medication, and no one was working with me to resolve the issue. It was one of the perfect storms of disaster where a number of things weren't done and the end result was Lily off a med she has been on for YEARS, cold turkey. It was a ROUGH two weeks. And me in all my non confrontational ways was on the phone with hands shaking and yelling at someone who finally tired of me and got meds from Maryland to my door step in Chandler, AZ in less than 12 hours. I'd hate to see that bill. It was something that never should have happened. She was also out of diapers. I was never home long enough to be able to do laundry and everyone (with the exception of me and a victoria secrets problem) out of underwear. I figure if everyone bought underwear like I did, I really could do laundry a lot less often. Then add my responsibilities I carry as an employee, a wife, the one who is trying to get everything on everything about anything I have ever done in my life and add the paper trail to the underwriter for the loan for the new house, a board member, a friend, a MOM, hello. I was wrecked. So in over my head. The thoughts of everything I had to do and the actual time I had to do those things didn't match up. And I also felt when you have a million things to do nothing is good. It's all crap because your focus isn't on any one thing. It is a not a good feeling to realize everything you are supposed to do is going to crap. So I had a poor me moment. And although I really am not a "list" person per se like for my daily activities, I am learning nothing is impossible if I just list it out. Put them in by priority and I can only look at one thing at a time. If I see the whole list, forgetaboutit, but one by one I can do it. Like one day at a time. I totally get that whole mantra.
But we all have our days, weeks, months, when life gets overwhelming. I know I am not unique in this. I just hate who I become when I can't handle it. I'm trying to take care of one thing and this other thing is like "look at me, look at me" and I ignore one for the other. I am so focused on worry about Lily and her ending up in the hospital over missing her medication that I am like on pin prick away from deflating all over the house.
Just last week our pastor made mention about watching our kids when the whole "watch me" is insisted upon. And I am not kidding, I can be in the middle of feeding Lily and hear out of two mouths "watch me mom" "watch ME mom". I look and they are doing a flip from the padded ottoman to the padded couch. I wonder what am I supposed to say, yay you didn't break your neck this time. But after hearing that from the pastor and I know he said a whole lot of other things but I obviously was convicted on this one point because it is all I can remember. Watch me. Watch me. Watch ME. And I do. I watch, then look away and am scolded to watch it again. And in that moment I realize I am annoyed and want to fold my laundry, do the dishes, feed Lily, whatever task I am doing more than watch Oliver take a car and wind it back and watch it move forward. But feeling this conviction I have been trying to take more notice. I make sure my eyes are on his when he looks up to see if I am indeed watching him and the smile on his face, the satisfaction of being seen if worth those seconds I would have folded a towel in. And this just had to be the one thing I am working on when I take Lily to the eye Doc and see in front of my own eyes another mom go through this issue. A beautiful young mom sits with her two boys in the waiting room, her one son has his hair gelled to perfection with his stylish outfit plays with a truck, her other son, equally as handsome and dressed for success had his arms missing from elbow on and his legs from knee on. The little guy pointed as he knew how to a toy across the room and a little girl brought it to him without a second of doubt. The mom sat with her son as she tries to help him maneuver this new toy. They are working hard as I see her other son saying "mire mama" "mama" "mire" he must have said in spanish look mom at least 5 times. And she never looked. Never. And I am NOT getting down on this mom. I am not. I have been this mom. I have not looked. I have probably not even heard the request. But I saw the hurt on this precious boys eyes and I saw Oliver. I saw Andi Jane. I saw hurt eyes who want their mom to see something important to them. I was crushed watching this. I wanted to tell her to look at her son, but what right did I have to do so? I just sat there sad. I realized this was a learning moment for myself. I actually got an outside view of my inside and I didn't like it and now I know what I have to do to right it. I will watch. I will see what is important to them.
I know it isn't easy being a sibling to a special needs child. I have to remember each and everyone of them is their own sweet person and I have to remember that they need us. They need US to see what is important to THEM.
But I did tell them if I watch them break their arm doing flips off the couch, I am not taking them to the hospital.


Tuesday, August 21, 2012

hE mAkEs BeAuTiFuL tHiNgS

My good friend Codi came by on Saturday with her camera :)
Here is the outcome:






I sat in tears as I looked at these images and listened to "You make beautiful things" on the radio. He indeed makes beautiful things. The MOST beautiful things. I can get upset at the unfairness of it all at times, but one look at these images. Those blue eyes, those perfect lips and I realize God has his hands in everything at all times. No mistakes are ever made and every life is precious.
Thank you God for giving us some of the most challenging and rewarding 10 years ever. Thank you for blessing us with the gift of being parents and being the parents to these 3 beautiful kids. I am just feeling so blessed. Thank you Codi! You couldn't have possibly captured her any more perfectly!

Tuesday, August 7, 2012

It's the stuff that make memories

I wanted to share our weekend we had last weekend in Greer, but have been so busy it almost seems to late to bother. But I am going to anyway. And add some fun photos to boot.
Our family went to visit my parents in Greer last weekend. It was the Kick Ash Bash weekend they started last year after the Wallow Fire almost left Greer nothing but a memory. We went up after Lily's long fitting for new AFO's. I must add to this that Orthotic Specialists is the best, most innovative place ever to get AFO's! Brett and Barb are a husband wife duo that care about each client and keep up with the most current education and they are just so darn sweet! I just love those guys. They are so patient with Andi Jane and Oliver, it was a long appointment, and they really care about Lily. Brett decided to try Lily's AFO's with a heel and she walked so much better! She even stood more firm. It was so amazing to see and we are just waiting for the  ugly shoes to accompany the impossible to fit AFO's to get her wearing them daily. We will also add SPIO when the weather cuts us some slack, possibly in October. Brett really thinks Lily will do better with more pressure on her and help her proprioceptive "issues". I was so impressed by the AFO's, I totally believe him!
So after that appointment we headed up to Greer. A fun little 4 hour drive. Ha. Kids were good. Weather was amazing. Saturday the sun shined and the rain poured. It was a bi-polar weather type of day that us from the valley enjoy. My mom needed some help finishing up these little wooden boats for the boat races on Sunday so my Saturday was spent on the porch making boats. Sitting inside watching Olympics making boats. Making boats.

Andi really wanted to stand with Lily and I got some amazing images from the sweet session. I love these girls. I love Andi's compassion and tender heart and I adore the way Lily loves Andi Jane. At times it hurts seeing "typical" sisters interacting, playing, having fun and I wish for my girls that type of relationship, but then we have moments like this that tell me our family is who it is supposed to be. <3 p="p">


The rest of the day, in between boat making, was riding on the Ranger and being silly.


Saturday night we realized Oliver had been playing in the van and locked the keys in it. I needed to run to my parents store and so Andrew and I tried to jimmy the lock. There was a lot of "to the left" "who's left?" "My left? No your left" It was fun. Divorce court fun. The rain started. The sun set. It was a blast. I ran inside to get a towel, I bent down and came up hard on the corner of a cabinet. I hit so hard I saw stars and my head bled. I came back out and finally he hit the unlock button. Sigh. By then it was to late to go to the store and my parents were heading back to the house with what I needed. An Advil and dinner out while my parents watched the kids mended it all back up.
Woke up to a beautiful morning. My parents took Andi and Oli down to the boat races and Andrew and I took Lily to meet everyone in the Ranger. We had not driven the van since we unlocked it, just a note to keep in mind. On the drive the the creek Andrew got stung in the belly by a hornet. His belly was inches away from Lily's arm. He took one for the team because I don't want to know how Lily would have felt about that. The boat races was fun. Oliver had two boats make it to the semi finals and Andrew, Andi Jane and Oliver had the fun job of catching the boats.


Grandpa and Oliver

Lily had the job of catching butterflies. Poor girl had a seizure and slept the day away.


After all that fun we had to get going, we had a group to meet up with back at home at 5pm so we get to the van, get all loaded up and..... the battery was D-E-A-D. Yuppers. Oliver left the auxiliary button switched. Gah. My dad had to jump us, it took way too long. We were to late to make our group. But we had some Chinese food and watched the Olympics. And then we all went to bed.

And this is how Monday started for Oliver.

I loved that weekend. We always love our times in Greer, but that short weekend had so much happen that made us laugh (in retrospect) and made me think of all the family vacations we had as kids where someone got injured, or scared or made a mess and those end up being our favorite memories of all.

What did Jon and Kate say, It's a crazy life, but it's our life. I totally concur.

Thursday, July 26, 2012

Acceptance.... Again

So I feel like we are on this roller coaster. One day we are upset and trying to see what we can do to change the outcome. Then we find that place of peaceful acceptance. Then there is upset and we are again in turmoil. I think it is and always is surrounded by Lily's seizures. They are what sets us in these highs and lows and again we have to say, and something I say very easily with the other two kids, knock it off.
Last night after Lily's, yet again, late afternoon nasty hard seizure, Andrew and I had a talk.
We take a med away, she has it. We give her a new med, she has it. That late afternoon seizure happens regardless what we do. So I said "what harm is this causing her?" and I mean it in the long run of her life. She has the seizure she doesn't cry before or after then she falls asleep. Is she more hurt by it or are we? Andrew just looks at me and says so what are you saying? I am thinking to love Lily is to hate seizures. It seems to be no way around this equation. What if we love Lily and be indifferent to the seizures? Maybe if we put less of an importance on them, maybe we can just love Lily as she is. I am not saying we'd love her more without the seizures I think we just have always felt it would make everyone happier for her to not have them. But maybe that isn't a possibility. Neuro wants us to do brain surgery. But is that late afternoon seizure bad enough to cut her brain open? Is it bad enough to risk, even to the slightest degree, risk her life? No. It isn't. Seizures suck. I pray one day they cure CDKL5 and learn to wipe out epilepsy. But as of right now Lily has seizures. She has them everyday. We have fought them tooth and nail and they still win, but we can't let them ruin us. So here we go again. Another round of Acceptance. Lily is safe, she is comfortable and we make sure those seizures never hurt her. So we will once again welcome that peace that comes from that beautiful three syllable word ACCEPTANCE.

Tuesday, July 24, 2012

Another First Day!

    How do we have a 5th grader and 2nd grader???!


Wednesday, July 18, 2012

Living with CDKL5

I am so excited to share "Living with CDKL5" from the AdaptiveMall site!
Click here for Lily's story
A few months back I saw the whole "living with" series on the site and emailed them to ask how we can take part and they sent me a questionnaire and asked for some pictures and I was thrilled to oblige!
I love how it turned out and am so grateful they included so many photos and even our CDKL5 and Me video I made 2 years ago.
So happy to be able to share our precious girl with the world and bring more attention to CDKL5!
Hope you all enjoy it as much as we do!

Tuesday, July 10, 2012

How we roll

Me: My period is starting soon
Andrew: Doesn't she know by now we don't like her?
Me: At this point babe we like her much better here than not here
Andrew: True

Monday, July 9, 2012

Which mama we talking about?

Andi Jane was in Greer with Grandma and Grandpa for almost 2 weeks and I didn't like it. We missed her so much and totally realized how helpful she is with the other kids. Sunday morning I was very hesitant in sending Lily into her Sunday School class because Andi Jane wasn't there with her (unfortunately I was rightfully so in my hesitation as she did have a seizure in class). Andi should be in the 2nd grade class, but instead she is in the 5th grade class acting as Lily's aide. And she is the best aide Lily could get. I am sure I will be the cause of much money spent in therapy for Andi Jane one day, but we do what we do as a family, right? We try, we make things work and then look back and see how all wrong we were. It's the cycle of life.  
Even Oliver, my funny, sweet little Oliver has been exhausting! I didn't even know this until Andi Jane left for the week. He talks to me all day long. All day. Every minute. And he is very hard to understand so he will ask me a question I will hesitate as my brain tries to catch up with what he is saying then he says, "Hu Mom? Say Yes" so I do. I say yes and the next thing I am doing is running around the house on a broom because don't you know he and I are witches? I said yes that we were. It never stops. I love that he wants to play with me, as second fiddle of course to "his Adi" but a mama does need to do other things than playing bad guy, spider man, ming ming, and a witch all within 3 minutes of each other. So funny all these things I would probably murder to have Lily do and I find myself totally hypocritical on this by being bothered with Oliver and his insistence on being up in my business all the time. I am a hypocrite. I know it. And by murder I don't really mean I'd murder someone for Lily to pick up a skill, that is silly. It's an expression. Actually a dumb one at that. But I would do pretty much anything to get Lily to talk all day long. But there isn't anything I can do legal or illegal so the whole thing is moot. Something we all say when we want something we can't have. And don't get me wrong I love playing with Oliver, he makes me smile like no other, I just now realize Andi handles a lot of that energy he produces. Granted they do fight and again my eyes are open to why Andi gets so frustrated. She is dealing with a 3 year old. Enough said.
And maybe my patience are cut short because Lily's seizures are just outrageous right now. And she was doing well. I even told her neuro she was doing great. But she is not. And to be quite frank, it really pisses me off. I seriously get angry inside because of it and as someone who has spent some time getting counseling, I know anger is a secondary emotion and I know in this case it is secondary to my great sadness I have over the fact Lily can't go a day with out a seizure. Heck she can't go 6 hours without a seizure. And she is almost 10. Almost 10 years with this beast. This stupid beast that we think we finally find a way to slay, at least handicap yet we never do. 
Saturday night we took Lily and Oliver to a Diamondbacks game. We do everything to make sure our seats are handicap accessible, we find elevators, we park in handicap parking. Everything we do is around the wheelchair and we don't complain. Ok if I see no van handicap spots open and see a little sports car in the only place my van is able to load and unload Lily, yes I complain, but for the most part we don't complain. It is our lot in life. It is Lily's lot. She is in a wheelchair and we do what we can to adapt our life to that fact.

Here is where I complain, we were in our seats, having food, I was feeding Lily her dinner and meds when mid bite she goes into an awful seizure. A big seizure, one that made me think she will choke her food and I was mad. Almost mad enough to leave. Lost my own world with Lily I hear Oliver singing "This is serious", you have to watch The Wonder Pets to get the tune but one part of me wanted to scream THIS IS SERIOUS! This sucks! Our life sucks because we can't do one single fun thing without these stupid idiotic seizures ruining everything. You know in 40 year old virgin when he gets his chest waxed and he screams everything he can possibly say? Well that is how I feel. I want to scream every expletive imaginable because for some reason I think it will make me feel better. This is my rant that is running in my brain. The life isn't fair tantrum. BUT instead of letting her take the show I shut her down and look at my son and sing back to him "this is serious" and I kiss his sweet buzzed blond head and swoop him up on my lap and snuggle him because he doesn't know yet that life isn't fair and I am not going to be the one who tells him that. He has plenty of life left to see me mad, I can't let my anger at seizures get redirected to him. 

And right there at that moment I realized man I sure can compartmentalize. 

Lily slept and the rest of the game was cool. I did my best to enjoy our family time but all the while that selfish me stood there with her arms crossed and totally pissed.   It hurts. It hurts with this intense burn that burns in my gut. I'd say in my heart but it really lies in my gut. It also hangs out in my throat and makes it hard to talk. It fills my entire body yet I shut it down. My great sadness I shut out. Yet with Andi gone it was just so much more prevalent. And I guess if I had to put into words why, I'd have to say and I hate this, but I think we pour everything into Andi. I think we put all our hope for 2 daughters on one poor girl. I try not to project on her, but I think I must. How else can I explain how hard it was when she was gone. Yes she is my daughter, yes I missed her, but my anxiety over Lily was heightened in her absence. That isn't fair. It's like I share my burden of Lily with Andi. I never knew that and I hate that, but there must be truth in that for me to have felt it so much in her absence.
I had let myself get into a bad place again obsessing over things I can't change and want to change. In New Orleans I saw videos of kids communicating and I think if we can stop the seizures Lily could do so much more. I obsess on the thought of if we can do this, than this. I wear myself out because what I want is not becoming a reality and then I find myself in the words of a 'real housewife", Angry Spice. 
Did I let myself get into a bad place mentally again because my prayers weren't answered how I saw fit? Maybe. Was I upset because my 7 year old daughter whom I place way too much responsibly on was out of town and I didn't have her around? Possibly? Am I just cycling all my sadness again like some kind of clock? Possibly, it is almost Lily's 10th birthday and lately I have been running into a lot of 10 year old little girls that crush me a bit every time I hear them tell me their age. I do so well for so long and then that selfish arms crossed, pissed at the world girl starts taking more and more space up in me and I am realizing it is because I am letting her. I am loosing my focus.
Lily is having more seizures, Lily is also entering a new physical stage and it is possible her hormones are out of whack. We are seeing an endro for her and who knows, maybe they will have some suggestions. Andi is back home and I am going to do my best to lighten her load some. I had no idea how heavy it was for her. It is probably why she wanted to stay in Greer forever, I don't blame her! I need my focus to go back to a safer place, a quieter place, a place I am loved as I am. I am not expected to be everything. The one place I can lie at his feet and be completely vulnerable. I have strayed from that place trying to be all to everyone and by doing that I weakened myself. I need to go back where I was last year and find solitude again. 
I can't let outside circumstances ruin who I am. Lily has seizures. Has practically since birth. I can't change that. I can't mess with a petri dish and change her future. Of course I can still hope and pray and do everything I can to change the future of CDKL5, that is in my blood, that is what I am supposed to do. But what I can't do is hold all my self worth in her and her seizures. They have become the idol in my life I am worshiping. The very thing I despise is what I am worshiping. And that I can't continue to do that. I will continue to compartmentalize. I will always hold my sadness, my anger, my happiness all in the same body, but I have to let that hopeful girl shine through them all. Give her far more precedence than all those other mood suckers. I am working on changing my attitude and my heart because as we all know we often can't change our circumstances, but we can change our attitudes. 
It's not easy and I do think at times I am working with a half full heart, but aren't we all? I have to love with that heart no matter if there are cracks in it, it has to be used, all of it. My kids need to know how special they are each in their own way. Lily and her smiles and princess attitude. Andi and her heart full of compassion and Oliver his humor that is spoken in his own language. They are all perfect. And just because life didn't hand them to me in the package I had planned and expected doesn't make them any less lovable. I thank God every day for all three and especially that 4th of July vacation we brought home with us because if it weren't for Andi Jane, totally unexpected, I don't think I would have known the brightness parenting can bring. I pray I can love them seizures, attitudes, non stop mouths and all. All of them. They will have all of me. Even if it's not enough. Thanks Matt Hammitt for writing the best song ever when talking about loving our children. They are worth every fallen tear. Worth facing any fear. They will have all of me. And the good me.

Sunday, July 1, 2012

New Orleans!

New Orleans was awesome! What a wonderful weekend! It was awesome to have some couple time, it was awesome to have a face to face meeting (for 4 hours :) instead of a conference call) with the most amazing women I could ever possibly get to know and get to meet other CDKL5 moms and Rett moms that I have gotten to know and love via the internet. It was awesome relaxing in the big easy, drinking on Bourbon street and attending a tribute ceremony with amazingly awesome people. Get a room full of people who love and adore their child with Rett and CDKL5 and you find yourself at home. Friday Andrew and I ventured out a bit on our own with the thankful advice from my favorite Louisianan, Wendy, and ate.
(Acme Oyster Bar)
Then we met up with other CDKL5 families and went to eat again! It was so much fun finally putting a face to a fb profile picture. We all got along so well it was like we were all meant to be friends. And getting to meet a few of our CDKL5 kids was so fun, the sweetest girls ever! And so inspiring to see some walk and even have words! CDKL5 can really vary and I enjoy seeing what other kids can do!

(I'm fairly certain Andrew would have brought her home with us if he could have)

Saturday Andrew and I went to breakfast, again on the advice of Wendy, and had the best time. Then we walked, laughed, talked to strangers on the street, and went back to the hotel to lay out by the pool before I had to meet my ladies (board team) for a "little" meeting that went on for 4 hours.

(we loved the bright colors we saw everywhere)

And I would have been ok it going on for 8 hours. This is the best team of amazing woman! All with different talents to contribute, with hearts for our kids, working for one cause. Then Andrew and I broke off for again, yes food, and met everyone up for the tribute ceremony. I won 2 raffles and was so thrilled. I apparently won an ipad holder, but I thought I was winning an ipad. A little awkward, but not too bad :) I did have a couple of drinks in me so I really shouldn't have been trusted for much. At the end of the ceremony was a beautiful video of all the beautiful kids and of course it made me cry. THEN... we hit bourbon street. And I will let us all remain nameless and eventless because as much as they say what happens in Vegas, stays in Vegas.... it really should more so apply to New Orleans ;)

(....I don't know)

Sunday I woke up at 8am. And at 9am. And at 10am. And Andrew finally said you have to get up at around 11am. I did have a busy day. Oops.
Our conference started at 1pm and we got to hear from some wonderful speakers. We learned more about CDKL5 from the man who found CDKL5, John Christodoulou, all the way from Australia. Kind of surreal to ask him personally questions about our Lily and her faulty gene that really messed everything up.
We heard from the wonderful Dr. David Frame, our President of IFCR's researcher hubby, he talked about research, where we are, where we need to be and goals for the future. We could have not got any luckier having Katheryn and David as our team leaders to finding a cure! Katheryn spoke beautifully about IFCR and we had therapists speak specifically on working with our kids. It is so eye opening to watch kids like Lily be able to communicate once they find the right device to do so. I have said this again and again, Lily has so much to say, we have to help her get it out!
My friend and fellow board member Kelly and I spoke on fundraising and media. I didn't say much, showed a video I made of past fundraisers and hopefully inspired others to join forces and do what we can do!
Afterwards we all went out to eat and just talked and talked and talked. I met the sweetest little girl named Carly that reminded me so much of Lily at that age when I held her I didn't want to put her down! Her parents I had just met, but we talked like old friends. Every moment was cherished. I love all my CDKL5 families and their kids and I just wish we could all live in a little neighborhood where we all can just be around each other all the time. But since that can't happen I am glad to be able to meet up any chance we get! I love the energy everyone has to make a difference, to raise funds for research and to get the name of CDKL5 out there! Our goal right now is to get a big name to back us! Any tips from you out in cyberland we'd love to hear them!

(Karen and Samantha)

(Kristin, Patti, Susan and Melissa)

(Amy and Carly)
(During this dinner we saw a parade of elephants walking the street. We don't know why, but it was quite the show/dinner stopper)

Monday several of us got breakfast at Cafe Du Monde and we laughed when the menu was how many beignets you wanted. "What no eggs" asked Kristen? It was quite comical. But those were some darn good beignets, closest thing to them at home is a funnel cake from the fair. I loved that one last chat at breakfast with our friend and then it was all over. Time to head home. We had a great time, but I really wanted to see our kids!
Then we took a long trek home. A delay after another delay, after another had me antsy, I just wanted to see my babies but by the time we got home they were all sleeping so Tues morning was when I got all my hugs and kisses in.
So glad we went. So glad it was in New Orleans. So glad Andrew joined me. So glad that we were given this opportunity to have our meeting and if it weren't IRSF giving us this opportunity it probably wouldn't have happened. We are living a blessed life! It may not be the easiest life, but it sure is blessed. Thank you Jesus!
(Awesome new shirts!)

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