Mentally exhausting day

Sorry for the delay in posting-if you didn't already know, Ethan was discharged Tuesday afternoon-we got home about 4:30pm. Not without a bit of drama, of course.  

Per Cardiology Resident and two nurses:

It's not his heart. 

It's a virus.

No need to involve Pulmonology or Immunology. 

His sats are acceptable to be at 90, or even high 80's when ill. 

It's just a cold. 

Brian and I are seeing a pattern with Ethan eerily familiar to the 6 months prior to him being admitted to the ICU for drips for congestive heart failure and a BNP of 3500. 

We are seeing a fussy, lethargic, panting child with no other respiratory distress indicators. 

We are seeing puffiness of his feet and color changes and mottling up his legs and arms.

We are reminded of the months we took him to his pediatrician saying "he's just not right"

We are back to admissions for minor viruses, causing him considerable drops in his O2 sats. 

We are seeing a kid whose hand you can't keep out of his mouth without a brace on it too weak to put it there because he is lying with his arms over his head to help him breathe. 

We are envisioning a slow downward spiral of our guy reminiscent of 2011. 

We are seeing the big picture. Not sure anyone else is. 

We have been told to never take Ethan to Children's Mercy Urgent Care North again by the Medical Director himself, Dr Michael Moran. During the phone call he made to me on Thursday morning, he stated "Ethan's fragile state and deteriorating status can't be handled at the UC"

He is "Outside their scope of practice" 

And we are "not to bring him back here if he is sick". 

But wait, it's just a virus, a cold.  He's not deteriorating. Per Cardiology. 

Colds are outside your scope of practice?  

You suck as a physician then, and I will never, NEVER set foot in your UC again. 

I will be that mom that makes unnecessary visits to the ER for completely non-emergent needs like suctioning, if its after PCC hours. At least I still know a few awesome nurses there. And X-ray Techs!

At our discharge follow-up appt with E's amazing pediatrician Dr Russell Thursday afternoon, I lost it. 

I cried, she cried and then we had some serious discussions. 

The elephant in the room was addressed; we will outlive Ethan. We've known it for a long time. But in the interim he deserves to continue to have the same quality of life he is accustomed too.  And if we don't feel those requests are being honored, or are actually being roadblocked, we need a second opinion.  And we need it fast before we travel much further down this road and reach a point we can't turn back from.  Sooner than later.  

This summer. At one or all three of the best pediatric Heart Care Centers in the country. 

University of Michigan

Boston Children's

Or CHoP -Children's Hospital of Philly 

Her words. Someone who has cared for E for 5 years. And she sees the big picture. 

We need a plan of action. I'm not asking for a crystal ball reading to tell me when he's going to go into failure and how it's all going to come out. I'm asking is there anything else we can do in the meantime to ensure he continues to have the great life he has.  And at what point we intervene, and based on what his symptoms are-how do we intervene?  Meds?  Oxygen? Surgery?  And in what order.  

If he does this-we do this. 

And if he does this-we do that. 

Etc. 

I don't need a timeframe. I need a "when he does do this we will be prepared plan".

Give us some standards. Make a plan. Cause if we make one-that will inevitably ensure Ethan doesn't follow it!   It's when we wing it that he will prove to us he's in charge, and it won't be pretty. 

At this point, the sit and watch and wait for him to gain 22lbs to be eligible for the Melody Valve Transfemoral Catheter procedure approach doesn't work for me. 

In all fairness, we have not spoken to Dr Kaine, he may not even know yet E had been admitted two days after our Cardiology appt last Wednesday. But I have called clinic and left a message for him to please call me at his convenience. 

He may have a plan, I may just need to ask him to clarify what that is. 

But if he doesn't, or we have other options out there and I don't know about them and seek them out, I will always wonder if I did enough for him. 

It's my right and my responsibility as Ethan's Mom to do this for him. And if any, ANY doctor caring for him can look me in the eyes and tell me they wouldn't do the same thing for their child then it's time we parted ways with that Doctor. 

Because we're not giving up on our little bald guy. 

We know him best. 

And we're not going down without a fight. 

So be on our team, or get out of our way. 

To my besties who called me, text me, sent FB messages, and the things you said and offered;  thank you. I needed it, you knew it, and you were there.  

Thanks for being on my guy's team.

 I love you. 

Confused

So.....Ethan decided to visit the big house again.  It all started Saturday afternoon when I made the mistake of checking his O2 sat with our little portable monitor because he was kind of fussy and agitated and while holding him noticed he was panting to breathe and could feel some rattling in his chest. It read 67. Not good. But I wasn't sure I believed it. But before we traipsed on over to Children's Urgent Care, after the ordeal I got for taking him there last time-and not really wanting to drive downtown to find ours was inaccurate and he was really 97, I thought I would verify with a real monitor. Called my sis, and being that we just happen to know some people who know people, we had front door service with a real monitor in about 15 minutes. 

Long story short-our sat monitor was inaccurate. He was actually 73. He lives at 98. 

By this time he was no longer panting, in no respiratory distress, not retracting, just had oxygen sats in the crapper. Looked perfectly fine. But he was wheezing a bit. So we figured his asthma had been exacerbated by the change in weather and allergies. I figured some deep suctioning, Atrovent and the miracle car ride would find us going right back home in a couple of hours. So we took him to Urgent Care North. Sats in the 70's there bought him a chest X-ray, blood work, a couple of breathing treatments and some steroids, and after all that, when his sats wouldn't come back up, an admission downtown.  The Dr there has taken care of Ethan in the past, and really felt he sounded and looked like an asthmatic episode. But his white count was elevated and his liver function labs were elevated.  The Dr wasn't overly concerned with us bringing  him there. The Respiratory Therapist however, was, for lack of using nicer words, a prick about it. He berated me for not calling an ambulance  and having him run hot downtown. He continued to say that sats in the 70's always require an admission.  And how I should have known better than to bring him to UC-what if they had to provide him with more support than they were already doing?  Oh, what, actually do some work?  Cause as soon as his breathing treatment was done, we didn't see him back in the room until it was time for another. As a matter of fact, after he helped us take Ethan over to X-ray, while I was helping get his chest film, he said he would be right back to help us take him back to his room, and stepped out. Guess who never showed back up?  And as the tech and I managed to get him back on our own, he was sitting at the desk chatting it up. 

 If Ethan were so critical he couldn't be managed there, I'm guessing I wouldn't have been the only one in the room with him except when labs or breathing treatments were being done. I know what critical looks like. I've seen it with Ethan. My son was a DNR at one point. And like I told the admitting docs who asked what his normal baseline was and I pointed at him and said 'just like this-minus the low sats'. Ethan looked no different than he did when we put him on the bus for school Friday. My crazy mother instinct told me something was off, and I was right. 

Strike 2 for Children's Urgent Care North. 

They don't get a chance for #3. It will be downtown from here on out. People who don't want to take care of my son don't get to. We will let you use your mad skills on runny noses and ear infections since he's too complex for you. 

Up to 6 Henson we went-but not before seeing all Mom's old co-workers in the ER who couldn't believe how big the bald kid had gotten and couldn't resist a few hugs and rubs on his handsome smooth head.  

Last night he did ok, slept with 2 liters of oxygen on, and when they tried to wean him he dropped to 78-even while awake. We have not yet seen any low heart rate episodes this time-knock on wood. 

They did do a virus panel and it was positive for rhinovirus and enterovirus. So he has a cold. And a virus everyone else tolerates like a cold. But he's got sats in the 70-80's. 

Today the team rounded and decided to just completely shut his oxygen off and as long as he remained above 80 he could go home this afternoon.  80?!?!?  He lives at 98-99. He had to be admitted for 70's and last admission-5 weeks ago-he couldn't go home until his sats were above 96 on room air. 5 weeks later 80's are acceptable??? What changed???? Oh, I forgot, we saw Cardiology on Wednesday and his valve leakage is now severe, and a valve replacement is probably 12-18 months away. However since we know Ethan doesn't tolerate pulmonary insufficiency very well, it could be sooner.  And as Dr Kaine said-Ethan doesn't do anything typical, so who really knows. But we are going to do follow-ups every 2 months. So I guess since we know his valve is crappy again we should just expect sats in the 80's and accept them.  

The resident said the cardiologist on today was not at all concerned about any of this being his heart after having reviewed his last echo, EKG and Dr Kaine's notes.  

But after I mentioned he's not on oxygen at home, he lives at 98-99 and the reason he had to stay so long last time was because he had to be back at baseline why is 80 now ok??  

No good answer, but oddly enough his orders got changed to "has to be at 90 or above or back on oxygen". And he's been on oxygen again since 1pm. 

Oh, and we just got transferred to 4 Sutherland.  

The heart floor. 

Hmmmmmm.......

Oh, and check out his feet. Puffy much??   

And then the nurse noticed his oxygen tubing was leaving a mark on his face, but it hadn't been tightened.  Retaining fluid maybe?  Nah, it's not his heart. No way. 

I always knew I loved this woman......

Yep, Angelina Jolie did it for me again. 

Love this chick. 

Her announcement of a double mastectomy with reconstructive surgery due to her BRCA gene mutation is nothing short of amazing. 

Like the article states-it was her choice. 

Prophylactic mastectomies may not be the answer for every woman with a BRCA gene mutation, as my choice may not have been even that of my best friends.

 But that's what's awesome about having choices and options in your healthcare. 

Angie -yep, we're sisters now, I can call her that- basically said she was consumed with fear that she would die of cancer at an early age, much like her Mother losing her battle to ovarian cancer at 56. Or her Maternal Grandmother who died at 45 of an unidentified illness. Odds didn't seem to be in her favor, I agree. And I understand. My Maternal Grandmother died of breast cancer at 53. I often wondered which of us women-one of my Mom's 4 sisters or her, me, or one of my sisters or female cousins-would be the one to be diagnosed with breast cancer.  Not could one us, who and when would one of us be diagnosed? Cause I just always felt certain that breast cancer had never fully left our family alone.  So I get that fear. 

“She is a special case, and you can completely understand why she did it,” said Dr. Susan Love, the author of a best-seller, “Dr. Susan Love’s Breast Book,” and a breast surgeon. “But what I hope that people realize is that we really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”

*taken from the NY Times Health Section 5/14/2013

She's a special case and you can completely understand why she did it, but still find it barbaric?  She was very clear why she did it-to be around for a long time for her children and partner.  To help ease her children's fears of losing their Mother having never gotten to know their grandmother. Well, Dr Susan Love, I don't see anything wrong with that reasoning.  And you making that statement sounds like you don't think someone like, me, for instance, would be special enough, or have good enough reason to want to be cancer free-or at least sway the odds more to my favor.  And I think my husband and children would disagree with you.  Even though I do not carry the BRCA gene mutation, I researched being tested a few years back and knew what my decision would be if I did.  Prophylactic treatment all the way. 

When I was diagnosed, I had cancer on one side, in one breast, in two locations. I had to ask my surgeon to take both my breasts. He never offered it to me while presenting treatment plan options. I had to ask if he would, and if he thought insurance would pay for it.  I had to ask about nipple sparing technique-which I did not do BTW.  I had to ask for the oncologist most likely to do genetic testing. And I had to ask for my surgery to be delayed so we could wait for the genetic testing to come back first, in case it was felt a hysterectomy or oophorectomy would be in my best interest to be done adjuvantly.  Had I not educated and advocated for myself, and my health, those options would not have been offered to me. I have said many times since that I am saddened by women who don't know to ask, or what to ask, or where to start and are guided by physicians who have no vested emotional interest in their patients. My question to my primary care doc was "who would you take your wife to?"  Cause that's who I want.  Don't get me wrong, I was very well taken care of by my physicians-friends and co-workers and referrals. But I also walked into the office already having an idea of my own how this was gonna play out.  And I got what I advocated for. 

So if you think Angelina Jolie can't bring anything to the table when it comes to her announcement other than more media recognition or greater celebrity status, I say you're a fool. 

She did her business in private, and can I say WOW, really private for nothing of the sorts to have leaked prior to her announcement!  And she isn't asking for pity or acknowledgment. She's letting all women out there know-the 200,000+ that will be diagnosed this year alone, that there are fabulous options available to them.  She encourages women to empower themselves with knowledge and advocate for what they want and need. 

She mentions more than once the costly expense of genetic testing. The BRCA test is about $3400 and you need to submit some familial info to be approved. No medical records of family members, just relation, diagnosis and age at diagnosis. And you have to meet some criteria to be considered for the testing. And there is ONE, I repeat ONE  lab in this country that does the testing. Myriad Genetics in Salt Lake City, Utah.  Maybe a little pressure from a well known celebrity could drive the cost of this test down, or prompt more insurance companies to consider the price of genetic testing and prophylactic treatment vs surgeries and chemo and radiation once the cancer emerges.  I know having the mutation doesn't automatically mean one will get breast cancer, but in this case the doctors say having done the mastectomy, her odds went from 87% down to 5%. Those are some damn good odds I would be willing to go right to my bookie with.  Because even with my mastectomies, chemo, and tamoxifen, I still have a 10% chance of recurrence. 

And these days with a lot of focus on preventative medicine to prevent diabetes and heart disease, why not preventative treatment for breast cancer?  I don't discount healthy eating and exercise, but with a gene mutation, the groundwork is already laid for something to go haywire, so doing everything right and still getting cancer is likely. 

 And while it's said that having the BRCA mutation is rare, and preventative treatment is drastic, there are doctors who admit even doing what I did was unnecessary! And I personally know two women with gene mutations whom I consider brave, amazing people.  One who knew she had the mutation prior to diagnosis and said she was just waiting for the cancer to rear its ugly head, and the other has a significant family history and chose prophylactic treatment to hopefully never endure what she saw her loved ones go through.  These women have helped me so much along the way, they are my personal heroines! 

And rare or not, doctor or not, degree or not, take a walk in the shoes of any woman on the receiving end of a cancer diagnosis or a 87% chance of getting cancer and then you can judge her decision. 

And only then. 

Cause statistics simply don't stack up against the will to do whatever it takes to watch your children grow up. 

And nobody has the right to take that away. 

To my Children on Mother's Day

I can't thank you enough for being given the privilege of being your Mom.
And I can't apologize enough for the things I did wrong.

Our life is crazy and wild. And I wouldn't trade a minute of it.
Even the minutes that made us hurt, because those are the ones that made us stronger.
Those are the ones that let me, as your mother, wrap you in my love, and kiss away boo-boos and tell you everything would be ok. Even when I wasn't sure it would.

Cause that's what Moms do.
Or at least that's what I've figured out over the last 16 years of being a Mom.

Because there was no handbook that came with any of you.
Sure, there were plenty of Dr Spock books, and "What to Expect...." books and other experts ready to tell me when to feed you, when to change your diaper, when to put you to sleep and when to wake you up. What car seat, stroller, high chair, bathtub, thermometer, brand of diapers, wipes and formula were the best for you. When and how to potty train you. How to "baby proof" the house.

I bought a few of those books. And I read a few pages of them.

And then I realized, through common sense and a lot of advice from my Moms and Grandmas and aunts and sisters and friends that you will cry when you are hungry or need changed. And when those basic needs are met if you keep crying it's perfectly ok to put you in your bed and let you exercise your lungs for a little while longer.
And if I put you to bed too early-you would be up even earlier. So if I put you to bed later, I would actually get a long stretch of good sleep. And those nights that you did wake up, it was the most magical time to sit and rock you back to sleep, just you and I.
And to never, never, ever wake a sleeping baby. EVER.
As far as car seats, strollers, and all that stuff goes, breaking the bank or taking out a small loan to buy the most expensive, top-of-the-line brand didn't make you any happier or better baby. That brand comparison stuff comes a little later-and lasts a lot longer-and that there are mean kids out there who will judge you by your brands. Toddlers don't pass judgement on whether you are in a Britax car seat or a Graco one. Just the Moms did, and it's easier for me to walk away from those people than it would be for you growing up.
As far as potty training goes, they don't tell you boys are much harder than girls, and that at some point I would be throwing Bob the Builder underwear away in the McDonalds bathroom because I thought taking you to the play place for lunch in your big boy underwear would be the breakthrough in potty training. And I forgot to pack a diaper, a clean pair of underwear or a plastic baggie.
That "baby proofing" the house really meant putting everything I ever liked, and wanted to keep, away until you were, say, about 10. And that I wasn't going to do that. I wasn't going to decorate the top half of the Christmas tree only, or cover every outlet so that when I needed one, I had to pry the cover off and break a nail in the process. I was going to teach you which items are yours and ok to touch and which are not. And if you happened to shock yourself trying to plug your Christmas tree lights in, you would only do that once.
Those books don't tell you that your baby will roll off the bed, or changing table because you turned your back for one second. And that they will be fine after all their tears, and mine.

It wasn't one of those books I referenced when I didn't know how high I could let your temperature get before I needed to worry. Or how much Tylenol was ok to give. Or what was the best way to relieve a colicky baby or constipated baby. Or if that cough sounded like a barking seal-and how to help. It was my Mom. Or My sister or Aunt. Another Mother.

And I messed up. A lot.
I forgot it was 'dress like your favorite book character' day at school and had to come up with a last minute make-shift costume at midnight.
I sent store bought cookies when homemade ones were still allowed.
I wasn't a PTA mom or a classroom volunteer Mom, or a bus-stop Mom.
I threw away most of the artwork/schoolwork you brought home-just saving my favorites instead of packing them away.
I was so tired and broke that one night after work I let you pick out your dinner at the Conoco Gas station around the corner from our house, so I didn't have to cook anything and could use the gas charge card. I did make sure you at least got a sandwich made on whole wheat and milk to drink along with your chips and cookies.
I was late picking you up from school because I was 8 months pregnant and had been taking a nap and I showed up at school in my pajamas with bed head.
I let you eat crappy cafeteria food for dinner every night while your brother was in the hospital.
I kept you out too late at night and let you miss naps.
I let your feeding pump go off for hours after it was done because I was so tired I fell asleep,and never heard it.
I forgot to give you your medicine. On time. Every day.
I didn't make it to every practice, game, concert, choir performance, awards ceremony or class party.
I yelled and lost my temper. And yelled some more.

I hope you realize that those events I missed while at work I hated to miss, and made sure your Dad or another family member was there standing in for me.
I hope you realize my absence was because I was at work, earning money to feed and clothe and house you.
That feeding you from a gas station is never as bad as not feeding you at all.
That I would rather sit at home and watch movies with all of you in my bed than go out with my friends.
That every time I attend a game or meet or concert or any event you are in that I cry. I cry tears of pure pride and joy.
That when you aren't home with me, I worry about where you are and who you are with.
I worry if I taught you right from wrong and that you make the right decision. Or if you aren't sure, that you are never afraid to ask me.
That I wish I could protect you from mean words and hateful people, but that I can't stop what other people will say or do. I can only hope I have taught you better than to do that to others.
That your heart will never be broken, but when it is, I want you to know you can cry on my shoulder, in my arms, no matter how old you are.
I wish I could shield you from sick siblings with life threatening illnesses and multiple surgeries, and a Mom with cancer, but know that it was your love and sweet faces that helped me get through those tough times.
That being the bigger person and saying your sorry doesn't make you weak. But that sometimes some people don't even deserve that.
That I've taught you who to walk away from, and who to keep in your life.
That I've taught you to stand up and defend those who can't defend themselves.
I hope that through all the mistakes I've made, that you never question my love for you.
That we are all human. None of us are perfect.
That I never wanted you to be the prettiest, smartest, most athletic.
I want you to do your best with what you were given and to be kind and compassionate.
To always be the nice kid. Never the mean one.
That the time I spend with you means more to me than the things I can give you.
And I know we won't always have that time, or that you won't want to spend it with me. And that's ok too, because Mommies need a break every now and then also.
I hope that I have lead by example, but that you take with you the lessons I learned from my mistakes too.

I hope you someday have kids as wonderful as yourselves, and know that along the way mistakes will be made. And it will all be ok. And I will always be there for you when you're not sure.

Happy Mother's Day to all the influential Mothers in my life, because you are who made me the Mother I am today.
To all my Sisters, Cousins, Aunts, Friends and those Mothers I've never met in person but share common bonds with-I hope your day was as fabulous as you are. Because you deserve it.

*yes-I'm in my Pjs on Mothers Day in this pic. Why? Cause I can be. Welcome to our crazy life.

Frustration

A week from tonight, I am supposed to be going back to work. If I still have drains in, I'm not sure that's gonna happen. Yep, drains still in. And putting out about 50cc per 24 hour period. In order to get them pulled, they have to be less than 30cc/24 hr for 2 days minimum. Ugh. And they hurt. And the skin around them is destroyed from the tape I've been using. Tonight I finally got all the excess sticky off with warm water, my fave Zum soap, a little Argan Oil, and rubbing. Oh, and help from my darling husband because I can't reach the drain site on my left-it's more posterior than the one on the right.
As far as my scars look, they look awesome! Dr B went right back in through my mastectomy scars, but sealed them with internal dissolving sutures and glue on the outside. Some of the glue is still on the scars, and kind of scabby, but overall look pretty good. The expanders she was able to get in are 550cc sized. Since I started with 50cc, and got 30cc more injected last week, I have 80/550. I am going back this Thursday for another fill, because she is hoping by filling, we will push any excess fluid out by giving it less room to accumulate. Then I can do every week, or every other week for fills. For my 'fill friends'-man the muscle spasms are terrible! I'm still having a really hard time lying down-like to sleep-but I'm hoping that is attributed right now to still having two drains in?? Just a little frustrated, hoping I would feel much better by now. Ive had a couple of crying days, and hate feeling that way. Brian feels bad because there is nothing he can do to make it better, and the kids get upset and worried. I hate pity parties, but have been in kind of a funk the last few days. My nurse seems to think I may be doing too much-thus the pain and continued drainage......hmmmm, me, do too much??

On a good note, Ethan's new PCA-Personal Care Assistant started last week, and has been wonderful! She has accompanied me to a few of his appointments, and especially right now, does all the lifting for me! It is nice not to have to have Brian take a day off just to help me. His PCA's name is Denise, and she lives about 3 minutes from us. Her availability is primarily days, so we have another gal to meet who can help us out at night. Ethan seems to be getting very used to her, and she is very good with him! Thank goodness for the Lopez Waiver! We are so grateful.

Today I got to take the bald kid to his second Vital Stim appointment. This is a therapy that works on helping him to swallow more consistently. They attach two small electrodes to his neck, one on each side of his throat, and it emits a slight electrical current which 'hugs' his throat. She then gives him tastes of foods, and we watch for swallows. The thought process is that with the Vital Stim patches on, it is a little difficult to swallow, thus when off, he will find it's easier, thus do more naturally. Today he did grape sucker, hot tamale, lemon juice, and frozen applesauce. He did so well, he got to swing at the end-which he loved! He was also on the patches for 41 minutes, which is awesome! His therapist, Amy, is the Aunt of one of Hailey's friends-small, small world. I am so excited for this therapy for our little bald guy, and looking forward to positive results!!!

I did get to do dinner and drinks with some work girls on Friday, and it was nice to get dressed in clothes other than sweats or PJs and go someplace other than a doctors appointment! Thanks NKCH girls for the laughs!

Hailey's final VB tourney was last weekend, and the girls did pretty well. We went into Sunday playing for Silver, but didn't pull out the wins. A couple of the girls on the team made comments about 'playing poorly and losing on purpose so they wouldn't have to be there all weekend'. Frustrating for the girls who love the game and play with their hearts, really kind of takes the wind out of their sails. Hailey is generally known for her positive, upbeat attitude, and I didn't see it this season because most of the other girls were just so negative. I have had more than one coach, parent and even a photographer at one tourney tell me how much they love watching her play- with her constant positive attitude and expressions. Sad to see that sucked out of her this season. Oh well, live and learn. And get the hell away from the negativity!!!
Hailey was also a little nervous, as we are pretty confident the anonymous text came from one of her teammates. I can't imagine how she felt out there, playing beside someone who would do that. But she's a great kid, and did what she was supposed to do; hold her head up and be proud. However, I can say I am glad this season is over, and Hailey has decided she won't even try out with this club again next year. There are plenty out there, and she saw a couple of coaches she did some private lessons with last fall who were very interested in her still. Now that she drives, getting her to Olathe, or Shawnee or Lee's Summit won't be such an issue for practices.

Parker and Brian are hoping to hit the driving range this weekend. Doesn't look like the weather is going to cooperate. He has also mentioned he may want to run cross country next year, so he and I are going to be working on mapping some long runs. I will be riding my bicycle while he runs. He has been making himself a Nutri-bullet smoothie for breakfast every day, and been experimenting with new fruits and veggies. Today he did spinach, steel cut oats, strawberries, kiwi, apple and almond milk. He's getting pretty handy with the smoothie making-and loves them! Great way to get his fruits and veggies in!!

We are supposed to be heading to Lawrence Saturday for Hailey's sister play her Senior Day of softball at KU-please Mother Nature cut us some slack! We really want to go watch Mariah play!!
Then we are planning to swing by Overland Park on our way back in town as Jonny has a soccer tourney he will be in KC for. Again, Mother Nature has to cooperate for all of this to happen. And if I don't get to go to The west bottoms for First Fridays at my favorite shopping spots-Good Ju Ju and Bella Patina, etc, etc. I am not going to be happy!! And me in pain, with drains, and cutting out sugar-oh yeah, doing that this week also- not getting to spend hours perusing the treasures of others, might just be an ugly site.

Gotta try to sleep now in my 45 degree position propped up with 3 pillows behind me, one under each arm and a small one on my chest so I can get up and take E to his Pool Therapy tomorrow morning. But a quick shout out to my nephew Kellen, who hit a 3 run in-the-park homer tonight I got to see! Go Kellen!! We have my other nephew Taylor's games tonight-hoping he does as well!!

Happy 30th to me!

Ok so maybe 30 is about a dozen years short of the truth, but it's a nice round number, so I'm sticking with it.
Thank you all for the Birthday wishes-really made my day!
My husband is working tonight, so I celebrated with the kiddos, pizza and an awesome episode of The Voice. Brian has plans for later in the week when he's off. Or so he says...
He already promised to take me to First Fridays in the West Bottoms Shops next weekend, and I would be completely happy with just that! And a Babycakes lemon cupcake.

To all of my wonderful bald kid and Hailey supporters, I thank you from the bottom of my heart. My heart was full of joy with the responses, posts, shares, private messages, emails, phone calls and texts in regard to my last post. I read just some of them to Hailey, and they helped her immensely.
I worried maybe I overreacted with posting the text online, but as my cousin Anthony Rizzuto put it best; "Ethan is an amazing 9 year old with special needs, and is still here on earth, long after doctors told us he wouldn't be, because he needs to help us teach a lesson or two about bullying and hate." And he's right. I didn't overreact, too many people under react -or don't act at all in the face of hate. So if me bringing our incident to light, sparks one conversation between parent and child, or friend to friend, or stranger to the special needs parent looking for just one friendly face in a crowd of parents of typical kids amidst the stares and whispers, then I've done some good.
After much debate with Hailey about whether or not we would pursue forwarding this text on to school officials, she was wrought with uncertainty. I don't understand kids these days, especially little girls. Hailey was genuinely worried we would paint a target on her back and she was worried of being pegged a narc. But it was Parker who surprised me the most. He told Hailey we HAVE to defend Ethan, because he can't defend himself and if we don't do it, who will. And if standing up for him, or anyone else, when someone bullies them makes people not like you, then Too. Damn. Bad. Yep, he said it just like his mother would have. You go Parker.

I also talked to Hailey about what a strong, confident, well-liked girl she is and how she would deal with this, and move on, as that's what strong girls do. But I also explained that the person who sent this text has probably done some sort of bullying before, and will probably continue to. So what about the next time this person sends a nasty text or posts negative comments on a FB or Twitter feed about a girl or boy who lacks the self-esteem she has and God forbid feels that ending their life is easier than dealing with the bully. Could she live with that? Of course not. But it happens, too many times. We all, and I mean ALL of us, have a responsibility to stop bullying and hate and intolerance of those different than us. And as parents, we must not only do this ourselves, but lead by example for our children.

So I ask you, my personal and Internet family and friends, to make this my best birthday year ever, take just one hour of your life this year, just 60 minutes of the 525,600 minutes we will live this year and make a difference in the life of a special needs person or family. Go spend that hour of your life with a special kid, teen or young adult. Go volunteer at a Special Olympics event. Go to a school like Ethan's and spend that one hour in their classroom. Take a friend, take a family member, take your child. Most of these places and events run on shoestring budgets and rely heavily on volunteers. Heck, if you're comfortable enough, I could probably even hook you up with a family who just needs a break, a date night, but can't afford or find a provider to sit with their special child for an hour. Because believe me, if you do this, it may only be 60 minutes of your life, but you will forever be changed by the experience, I guarantee it. And if we could get teens more involved in activities like this, it would go a long way towards changing the negative attitudes associated with handicapped, "different" kids.
I know many high school kids volunteered in classrooms Ethan was in while at CCVI, how come our Northland public schools don't have the same type of program set up around here with a state school right down the street??

Maybe I should spearhead a volunteer program like this?? I'll be thinking of a catchy name and mission statement this week.
Then I'll be looking for locations and volunteers.

Like I've said before; Ethan really is just a simple little boy. In a complex body.
But aren't we all?

In regards to the text and its anonymous, blocked sender, we did speak with the Clay Co Deputies, School Resource Officers, and Administrators at Hailey's school. They have some programs already in place to help weed out the perpetrator in situations like this. Beside the fact that whoever did it is only a child, with a young mind and I'm sure a big mouth, and won't be able to resist running it at some point. If, in fact, it is someone Hailey doesn't attend school with, but maybe knows through her extracurricular activities outside of school, we have had tons of other offers of private investigative, legal help in finding this person. And all in the name of my sweet little bald kid, and beautiful, brave daughter. We will be utilizing some of these resources, and are fairly certain we will know the culprit before the end of the week.

And I have no intention of crucifying this person. We all make mistakes. And maybe, once realizing the magnitude at which these words hurt, and all negative words hurt, I can change the perspective of one kid. Cause every good thing starts with one person's good intentions. And something good has to come from all this, right?

Now excuse me while I crawl around on the floor like a jonesin' for a hit crackhead with my phone for a flashlight looking for the Dialudid bottle I just dropped that rolled into the black pit of dust and unused crap under my bed spilling my beloved pain pills everywhere. Which BTW are not much bigger than the size of a grain of rice.
Momma needs her narcotics.

Your words will NOT ruin our day

This early Sunday morning for my family was spent at the Maple Valley 5K Run, Walk, Roll in support of Ethan's school. The weather was chilly, but nice, and the sun shined down on all of the wonderful people there for the same cause. Our special kids. Special kids of this community. Kids who struggle to do the simplest things most of us take for granted. I didn't break any records, or even finish the full 5K, but one week post-op with two drains and operating on pain meds, I owe it to my son, to walk for him. Because I can, and because he can't.
My sister Kim came and walked with us, my older kids ran it together-Hailey finishing 3rd in her age bracket! My husband drug himself out of bed after working last night and getting but a few hours of sleep. It was a glorious morning.

So you can imagine my heartbreak when I read the text I am about to post here.
This text was sent to my daughter Hailey while at school on Friday. It was sent anonymously, from a blocked number. This text is disturbing. Disturbing enough that Hailey was never going to show it to us. I was perusing her Twitter site when I found it.

Stop posting photos of your pathetic little brother.
Hes bald and retarded and his teeth are messed up.
Stop asking for sympathy and prayers cause no ones going
to give you any. Just leave and don't come back.

Yeah, wow, right? I copied this verbatim, poor punctuation and all.
I have run the gamut of emotions since reading this.
Shock. Anger. Disappointment. Disgust.
I really don't know where I'm at right now with my emotions.
Somewhere between crying and wanting to find out exactly who sent this to her and go right on over to their house and punch them in the face. And their parents for obviously raising a child with no manners or moral compass.
But since I refuse to let these words bring me to tears, and I'm afraid punching someone right now would hinder my recovery and getting my drains removed this week, I will use my words.
And know this anonymous, blocked texter; I am not afraid to put my name with these words like you were too big a coward to own up to yours.
My name is Kari Rawley. My address is 1418 NE 93rd St. My cell is 816-885-9525. And my personal email is karawley03@yahoo.com. Oh, and I'm on FB as Kari Haile Rawley and
Twitter as @krawley. You want to say something about my kids, or feel the need to pick on someone, come find me. Shoot me a text and we can hook up in person, because you mistakenly just bullied a defenseless, handicapped 9 year old.

YOU-anonymous, blocked texter (sorry, it's really the nicest way I can refer to this person right now) YOU are obviously "friends" with my daughter on FB, Twitter and/or Instagram to have seen all the pictures she posts of her darling brother. No one has forced you to look at these photos of her 'retarded' brother. Are you sure you're not just a jealous stalker? Someone who clearly doesn't have the love in their life that I see when I look at all the pics of Hailey and Ethan? Did your Mommy and Daddy not hug you enough and tell you they love you enough? Because I tell my children I love them every single day, and the love in our family shows in all those pics. Or did your Mommy and Daddy not spank you enough as a child and teach you right from wrong and what hate and prejudice is and how not not to foster those terrible attributes? Or do you just think that behind anonymous, blocked texting you can act like a bad ass and spew hate? I'm sure betting you saw my daughter at some point at school on Friday and yet didn't have the guts to say any of this to her face.
Nor will you now.

But I'm calling YOU out anonymous, blocked texter. That kid you called 'retarded' is a public school student and thus protected by the same bullying laws that protect YOU from having some kid punch your lights out. And telling my daughter to 'just leave and don't come back' sure sounds like a threat. We will be forwarding this text on to school officials tomorrow. And I'm making no threats here. This is a promise. A pinky swear, on my life promise that I WILL find out who sent that text and we will have a chat. In person. Probably with school officials and law enforcement and hopefully with a counselor for YOU and your issues.

How dare YOU make my daughter feel the way she has this weekend because of your rude words? To belittle the love and affection between two siblings that I see in all her photos. YOU must be perfect and have perfect siblings in order to be so judgmental of other's physical differences. But since I know you're not, because NONE of us are, YOU must just be a sad, lonely, person with little self confidence and making fun of others makes you feel better about yourself. And I'm sure that just you, one person sent this text, but more than a few know about it, and eventually someone will dime you out. You can't have gone through life, even just 15-18 years and acted this way and not made an enemy or two. Someone who knows YOU does know this was wrong, and their conscience will get the better of them.

I don't want an apology. Or an " I didn't mean it that way". I want you to spend a whole day with this 'retarded bald kid with messed up teeth'. I want you to see how wonderful he is.
How he can make you laugh and smile just being around him. How he would never think the terrible things about you that you think about him. How he knows no hate or meanness. For you to see how proud of him we are for the things he's accomplished in his nine short years on this earth. Surely more proud than your parents are of you. How he changes people for the better.
How he makes you instantly feel better when you're having a bad day.

If you spend a day with him and don't feel any of these things, then you are a shallow, closed-minded, self absorbed, evil, disgusting, poorly raised child who doesn't deserve to breathe the same air as my children. And the sympathy and prayers I ask for will be for you.

I want you to think twice before posting something negative and derogatory about another person online. Actions have consequences. People have feelings. And though my Family will not let your words ruin us-believe me little person, I've heard worse-we will forgive you for your nastiness, but we will never forget your attack on our special boy.

In the meantime, thanks to the wonderful wide world of social media, I'm starting an Ethan photobomb marathon until you either unfriend my daughter or own up to your cowardice actions.
I will post a pic of Ethan every day, multiple times a day and tag Hailey in every single one. I have 9 years and lots of pics to shower on you. Oh, and I'm off work for two more weeks-a great time to dig out even more pics of the bald kid!!
Because for those people who really are her friends, our friends, and who love Ethan, they won't mind seeing his bald, silly grin like it clearly bothers YOU-anonymous, blocked texter.