Calm Amongst the Chaos

Give Away

Kim Nothdurft

January 10, 2013

In honor of Rare Disease Day for NORD, celebrating their 30th Anniversary this year next month, I would like to get some awareness out about the rare disease that has turned our family upside down.
For my family and friends who often read this blog already knows LilyAnna Blu suffers from CDKL5. CDKL5 is a gene that you have and I have. We never knew it though, or cared right? Well you do know about it and care about it when it isn’t working correctly. One tiny gene in Lily’s otherwise perfect body has given her daily seizures. Daily.Like.Every.Day. EVERY. Ever been unfortunate enough to have or watch a child suffer a seizure from fever? Or from a fall? Heck ever have a dog who had a seizure? See one on youtube? It’s scary right? Every day. Each day since our girl was 3 weeks old (most likely even earlier) her body has seized. Then not only does she have this to deal with every day, she also has very limited use of her hands. Very limited. She has no words. None. Dr’s assume she is mentally retarded and every medical record has stated this is the case, but I look into her eyes and I don’t necessarily agree. If she is I couldn’t care one bit, but she has no words, her hands can’t even speak for her, how do any of us know what Lily is thinking? I think she is wiser than any of us. I think she grasps life well beyond any of us could ever grasp. I think she sits and she listens. I think she carries a sense of peace in her that we all desire we could have.
Lily is a ten year old girl whose life is in our hands each day. Every thing she needs we give her. We serve her and I will do it with joy until the day we no longer get the privilege. According to some doctors our days are limited, according to us her days are limitless.
I want to offer one of these beautiful necklaces to someone who would love to wear it with pride. Someone who wears it and answers the question “what is CDKL5?” with a “something we need to cure! won’t you help us?”

All I am asking from you lovely friends is to help me raise awareness by liking IFCR on Facebook
and visiting CDKL5.com and copying the address and pasting/posting it on your facebook page. Say I am posting this for Lily, or for Hannah, for Kiera, for Amber, for Mia, for Leah, Samantha, Vivi, Avery, Gage .. etc… I could go on for awhile with the names of kids who need us…just tell your friends this is something we need help in curing and I know we can with help from friends like you!
And of course after you do those two simple steps you must comment in the comment section below with the necklace you would like to have and your email! I will announce the winner Friday at 6pm (mountain time)
Thank you and good luck!!!!
PS If you don’t facebook, do it on Twitter, or Google +, or email it, or tell your friend in person, this is on your honor 🙂

Happiest of Holidays

Kim Nothdurft

no comments

January 2, 2013

I love Christmas and New Years. I think I just adore the entire month of December and feel blessed to have my birthday during a month of such heightened happiness. Although I find myself probably the most stressed out during December it is because I suffer from a rare condition called indecisiveness paired with an acute case of procrastination and when December comes those two disorders wreak havoc on me, but nonetheless I really do enjoy December. And I am promising to get my shopping done in November next year. Yup. Just like I do every year.
I admit I hit a deep sadness during this holiday season, but that isn’t unlike any other holiday season since Miss Lily came into our lives. I still love the holidays. I love that I am now able to admit that sadness, yell at it, cry about it and then turn the page to a new day. Sadness will always creep up, but we have power over it. I was able to have a joyous Christmas, we enjoyed our family time. Lily suffered several seizures, but when she was awake she was happy, she was engaging and she held my hand all day. What is not to celebrate about that?
I rarely really make New Year’s Resolutions and this year is no different. I just want to continue growing, learning, evolving, I need to be a less selfish person and that is something I have been working on and will continue to do so. I may never be Mother Theresa, but I do hope to learn some traits of hers.
With all that said I would like to share some photos from our last 2 weeks. I would like to say I honestly hope your holidays were a time of celebrating and being with those you love. I know that the holidays can find those who have suffered a great loss feeling a huge void and I am sorry. I pray that you were able to find sweet heavenly peace.
I look forward to seeing what 2013 has to offer and pray the year for you all is a year of joy and blessings. Don’t forget most your blessings don’t come gift wrapped saying I’m a blessing! I challenge you to seek what you receive and find the blessing in everything.
Much love!

Christmas Eve Jammie opening!

Christmas Morning with Grandma and Grandpa!

Lots of Happy Smiles and sleeping Lily

(Yes that is a Barbie Ken doll Oli is holding…. he asked)

Got to see lots of snow visiting Grandma and Grandpa up in Greer the weekend between the holidays.

Lots of sledding and playing in the cold.

Mama said snow is ok for a day. Just a day. She likes her valley of the sunshine.

ps Lily got an extreme hair cut. We were making life easier for all of us. It was not easy on mama. Not at all. I am looking forward to it growing out a few inches which will take days with Lily. 🙂 But I have to be honest, our days have gotten SO.MUCH.EASIER. Seriously!

Heavy Load .. Apologize in advance

Kim Nothdurft

4 comments

December 27, 2012

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 20^th 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.

Another Year Older… Wiser?

Kim Nothdurft

1 comment

December 21, 2012

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!

Praying for many today

Kim Nothdurft

no comments

December 14, 2012

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.

Thankfulness, forgetfulness and more thankfulness

Kim Nothdurft

1 comment

November 26, 2012

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.

Changes

Kim Nothdurft

1 comment

November 20, 2012

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.

Update from Scoli Clinic

Kim Nothdurft

4 comments

November 2, 2012

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.

A Comb and 7 Cents

Kim Nothdurft

4 comments

October 30, 2012

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.

Harsh Words

Kim Nothdurft

4 comments

October 23, 2012

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.