I wanted to post something uplifting, I have very few words to say, but a picture is worth a thousand words right? Right. These are pictures of Carter with his cousin, Faith.
Today perplexity and tears collided. It was around 1:30 p.m. today when I finally heard back from C-Man’s nurse about his bone density scan (DEXA). I called the clinic uh-gain to see if anything new has arised (maybe they forgot to call me) …well such was the case. There was a new note after some careful digging through the notes, albeit wanting to find something to tell me so I stop calling them.Â “Oh Oh good… there is a new note here – They based his readings off a five year old chart and it looks like note number 1 says, he has osteoporosis,” the nurse says over the phone. Last I checked, osteoporosis in your 3 year old – is not good. The tears kicked in. Finally hearing SOME news, yesÂ THAT is good, butÂ can we be more specific or careful with our words here? I know I would appreciate that. No, the truth is that didn’t insult me, her intentions were good, nurses do their best and their jobs are bar none one of the most difficult professions to have in my super self-appointed valued opinion.
I received a call from C-Man’s pediatrician within the hour. It was at that time the perplexity kicked in.Â “Well…there’s no chart for a kid 3 years old… and we don’t know what will happen if we give C-Man Pamidronate Infusions, as he could get hypercalcimia again and have to be hospitalized. We’ll have to draw blood constantly to checkÂ his calcium levels again to make sure he is safe… I can’t tellÂ you that you must do it, as it’s risky, but I can’t tell you not to because his bones will wither away.”
Yep, that was me thinking – sooo you’re telling me I have to choose to put him at risk of hypercalicmia/infection/blood draws/hospitalizations OR Osteoporosis?Â You probaby could insert another really long pause – because thats how I felt. It’s strange to be on the phone with a doctor who has very little time to be on the phone with you anyway and you are sitting there not saying anything. I must give my compliments to him though – he was and always has been very patient with me and Carter, even in this situation, which I am grateful for.Â Â I hung up the phone after letting him know I would think about it over the weekend and call Carter’s Endocrinologist on Monday to hear his treatment plan. I thought I already knew what he wanted to do – I thought he would say – “Let’s get started with the infusions.” Being the impatient person that I am (No matter how busy with work I tried to make myself – I can’t help it), I called the Endo office around 4 p.m. today, absolutely expecting to hear, “He’s out until Tuesday” (It’s never Monday and they’re never in when you call), but thisÂ timeÂ he was in. He called me back within 5 min. and he gave me a surprisingly different response than I had notÂ expected, “I’ve never done Pamidronate Infusions on such a young child, I would like to call around toÂ the U of M, Mayo and farther to see what has been done before. I want to make sure this will help him and I’d like to see if their are other remedies being used prior to something so invasive.”
I felt great knowing his team is willing to go that extra mile to make sure what they are doing is best for him and not simply easier for them.Â I feel great with the hands he is in here. Now the questions lies – – if he does do the infusions, will insurance cover it? M.A.? It’s still semi-experimental from what I heard so insurnace sometimes doesn’t, but how can it not with an Osteoporosis diagnosis?
We closed the book on eye surgery, tubes and his heart echo for a couple years. Now we begin the Osteoporosis road. I hope it’s a short one. He truly is a tough boy and so worth every appointment, phone call, therapy, blood draw, insurance bill, and random stranger explanation. It used to make me so mad at first when people asked, “Why is he so small!!?” I would (Sigh) and tell them – – he has Williams Syndrome. (All the while thinking – “How rude of you to point that out, like it’s really any of YOUR business, I’m simply in front of you in the grocery store!”) I’d tell themÂ some brief informationÂ and move on. But I learned from another WS mom to embrace those as valued opportunities, if they ask – they should be ready to listen! We want to spread the word about WS and we want people to know about it and what it is and how to recognize it. It’s a very rare disease and many children go undiagnosed forÂ years. The more people that know about it,Â the more people can help spot it. So now, if someone asks, I tell them all about it…usually they are like “Oh oh thanks” and ready to walk away before I’m even done, and some … are so intrigued – I know they googled it later.
So for now we wait and enjoy our love bug. I feel happy it’s not his heart. I know this will be painful for him, especially if he brakes a bone because of their current weakness, but he is strong and we know God is watching over him. He’s probably throwing little pillow clouds down when falls… Yep, little C-Man sized pillow clouds.
Tired probably describes me best today. Why I am sitting at the computer typing instead of lying in my bed, well thats the thing, i’m not quitter – i’ll go and go until I break down and have an axiety attack like i did today. Wait, let me rewind. The day went well, busy but altogether a good Tuesday. Frustration has been building as I’m still waiting to hear back on C-Man’s DEXA scan – but that’s a whole other issue and blog post I’ll wait for another day.
The day was nearing an end and I realized it was alread about 7 minutes after 5, when I normally leave. I quickly called my husband to see if he would come to my rescue in picking up C-Man. He would have maybe made it in time – but I’m a little anal about being there on time – so I quickly hung up and rushed down the steps like a bolt of lightning. Glad I didn’t roll down them, I rushed out the door – stumbled across a co-worker and said “Hi and Bye, Gotta pick up my son”. I ran across the street just to fall in the middle… surprised, but mostly embarrassed…i gathered my composure and ran the rest of the way again to my Jeep. I crawled inside and started the engine. I then proceeded to have an anxiety attack. I don’t get these often, typically about 2-3 a year… why it happens to me I’m not sure, probably stress. But once it passed I felt better.
It’s a horrible experience, I wouldn’t recommend, obviously. I wonder if there are any tricks or techniques to rid of them forever. Maybe not rushing down the steps and running across the street – just to fall? Maybe that would help? Anyway, I did get to daycare in time to pick him up and he was jumping for joy to see me.
It was like my husband new just what I needed – he decided it was a good night not to cook, but go out to dinner instead. I texted back with a smile on my face, “O.K.” The Eagle Cafe is always good to us and is the closest thing to your kitchen, except you don’t have to clean up the mess. The rustic decor and bread pudding that came with our meal was nice. This Tuesday is past us and it’s time for bed. Good bye anxiety – I’m resting now.
Today Anne and I took the plunge and had our first meeting to plan the 1st FM Williams Syndrome Awareness Walk. We made gourmet frozen pizza and ice waters and made our first plan of action. I anticipate more than a few “quick” meals before we are finished, but we know the cause is worth it!
We determined the date and location, but we have to confirm the registration, create a brochure, secure sponsors and form a committee. Lots to do, I hope this blog doesn’t suffer…Â If it does, you know where to find me! Saturday, May 14th is the big day. All Williams SyndromeÂ events around the globe are celebrating with walks during WSA Week May 8-14th, 2011. On Sunday we’re going to take a picture of our two little Williams children. We’re dressing them up in denim. Their beautiful eyes will match the blue so we’re excited to slap their picture on our brochure and get started. If you know of any business in town that would be willing to sponsor our FM WilliamsÂ Brunch please send me a message. Thanks and have a great evening, I need to get some sleep. Good night.
At a pleasant 34 degrees my treasure and I walked to our Jeep and climbed in. As C-Man begs for his mittens off, I buckle him in, pull off the mitties and hand him his toy. His laugh of joy brings a smile to my face and I know it’s going to be a great day. As I drove into town, i listened to the radio. A song about grace comes on and at that moment my heart went there.
C-Man cheerily went to his little classroom and IÂ continued my day as a working mom. I love my job, I’m very lucky to have a job that is fun and I can use my creativity. I work at a newspaper and am constantly reading about whats happening in our twin towns. Today, I read about two teen gals at Fargo North that are challenging their peers to stop using the “R” word. I was instantly interested. These gals are trying to change the way people talk, encouraging others to remove the “R” word as a derogatory slang word. I’m so proud of them! I even wrote a letter to the editor.Â I was touched that two teens would stand up to their peers to help make a change.
Teens learn from other teens – saying “Oh you retard” or “That’s so retarded”, except teens also learn from their parents. In fact, in my opinion, parents are the single-most influential role-model youth have. (I’m sure their is a statistic somewhere that agrees with me). Maybe the teens of Fargo North High School willÂ have such an impact on other teens that those teens can teach some of the parents too. It’s possible,Â through grace.
I know there are people who defiantly disagree and think that since THEY don’t think of it as mentally impaired people, they just like to use the word…but that’s just it…you really can’t. Because although – you don’t think it’s hurting anyone, it is. It hurts the people that were born with disabilities, they didn’t smoke themselves into this phyisical condition…they didn’t do anything to choose it. And their diagnosis is being used in a derogatory way? But you don’t think that should hurt? Ignorance is one thing – – but once you’ve been told it hurts, and continue to do so… that’s what hurts.
This high school teen says it best:
The Potency of the R-Word
By: Ami Fields-Meyer, Junior, Milkin Community High School
It hardly comes as a surprise when Ann Coulter makes an offensive comment. The conservative commentator seems to make a career of spewing language that denigrates a different party practically each week. This week’s off-color moment came when she tweeted about a cable news appearance by Christopher Barron of a Republican gay rights group called GOProud.
Wrote Coulter: “Great video: head of GOProud interviewed by retarded person on MSNBC.”
She is hardly the first public figure to cause offense with the R-word. Earlier this year, Rahm Emanuel, the president’s former chief of staff, called conservative Democrats “F—-in’ retarded.” Rush Limbaugh piled on, calling Emanuel’s subsequent make-up meeting with mental health professionals a “retard summit.”
It’s not just celebrities, though. As a high school student, I hear the R-word thrown around in offensive ways daily.
I’m in my trig classroom staring at a whiteboard that’s crammed with brackets, exponents, and an array of colorful digits. I’m trying to understand the problem on the board, but I feel like I’m reading a foreign language. My classmates are just as puzzled. One, realizing the problem’s complexity, sighs and lets out two words: “That’s retarded.”
Retarded. It’s ubiquitous. I can’t escape it. But I have never gotten used to hearing it. In fact, each time I hear “retarded” misused, I feel as though someone has stabbed a piercing blade into my neck. But as much as “retarded” pains me, something holds me back from confronting my classmate. The word renders me helpless and impotent. I can’t challenge him because he’s not out of the ordinary; everyone says it.
And not just kids. I’m standing at the checkout counter of my high school’s student store, Rice Krispies in hand. As the register stubbornly refuses to dispense a receipt, a mom volunteering behind the counter becomes more and more flustered. Irritated, she expresses her frustration: “This thing is retarded.”
Apathy has a major influence on the way my contemporaries use language. “Retarded” has become one of the go-to negative adjectives the Internet generation (alongside words like “gay” and “lame”). And while “retarded” is not usually spoken from a place of deliberate insult, it carries an insulting connotation: “Retarded” is used at the expense of a vulnerable group.
I’m at cross-country practice looking out at a long, rigorous course the coach has just ordered us to tackle. I turn hesitantly toward my teammate, whose exhaustion has clearly been exacerbated. At a loss, he resorts to the only adjective he can attach to his disappointment: “This is retarded.”
The R-word is a blade in my neck. My body stiffens and my fists clench at the mere mention of the word. But hearing it is unavoidable. So I’ve developed a sort of sympathy toward the ignorant, an assumption that people don’t know how their words hurt; that they’re simply in the dark.
But it isn’t sympathy alone that holds me back from the treacherous brink of confrontation. There’s another layer–something simpler that moves me to evade saying “please don’t,” or “that hurts”: 16-year-olds don’t have much of a platform to stand on in the arena of language use. And, furthermore, I run the risk of seeming almost sanctimonious; lecturing my friends and family on their choices of words when I’m still trying to discover my own voice.
Nonetheless, I’ve had no such luxury of darkness. Down the hall from my bedroom, my autistic brother struggles to carry on a conversation, getting stuck repeating the same phrases over and over again. (Granted, there are differences between autism and the other sorts of developmental delays that once fell under the umbrella of “retardation.”) Most of my peers have not witnessed the deeply rooted frustrations of missing out on a typical childhood. Few of them hear pleas like my brother’s to “go to school with the other kids.”
Sometimes I do leap abruptly at the opportunity to wag a finger. “Do you have a brother with a neurological disorder?” I’ll ask, my tone dripping with disdain. “Tell me, what is it about that math problem that’s mentally delayed?” But my discomfort with a generation’s forceful linguistic trend has changed the way I’ve chosen to express my displeasure. Public scolding, I’ve learned, rings hollow and elicits little more than an awkward blank stare. It’s not that I’m afraid or timid; but sometimes–even when I feel like my “retarded” bubble is about to burst — I just have to ask myself, “Is it worth it?”
Like it or not, it is.
I wish my generation (and their moms, where necessary) would realize something: words can be both powerful and toxic. Some serve a variety of purposes; but some are meant to be attached to one exclusive definition. Those words aren’t fit to be taken out of context and attached to scenario after scenario, ad nauseam. The movie you saw last night isn’t retarded, the Christmas sweater your Great Aunt Gertrude knit you isn’t gay, and your Monday afternoon SAT class isn’t lame. The more often we hastily slap one of those labels onto something, the more often we denigrate, disparage, belittle, and inevitably rule out a magnificent portion of our population.
The math problem was challenging, sure. The cash register wasn’t working and the cross-country course was disheartening. That MSNBC host may have asked some questions that Coulter didn’t like . But do any of those scenarios entail any sort of neurological delay? Most certainly not.
To preserve the sanctity of language and defend the integrity of another population of otherwise easy-targets, thought should always precede action and compassion should inform language. The next time you want to express how awful, offensive or frustrating something is, try coming up with another word. My suggestion: Coulterish.
The dreaded surgery is over and we are back home. The resilence kids have is astonishing. I don’t think he really has any idea that he’s had a surgery on his eyes. It’s his ears that seem to bug him more since we have to put drops in his ears three times a day (for the tubes). Which I’m not sure I understand why, but I am good at following directions. Some things you just have to trust, right?
His eyes are really red on the inside. Here is a picture so you can see. They moved his muscles that attach his eyes back 5 mm. That should correct his eyes so they no longer turn in. The odds are: 3 in 4 surgeries will hold his eyes where they need to be. Sometimes peoples brains over correct from it – so we’ll have to wait a few weeks to see what he decides to do. He’s been a tough guy through this and we’re hoping he can relax on the hospitals/procedures for a while, but we are still waiting on the results of the DEXA scan adn the Echo Cardiogram.
When we got to the clinic, to re-measure to verify how many milimeters to move the muscles, that part seemed simple… “Look at the toys buddy, follow it with your eyes…Look at that screen out there”. No changes, since the last visit – which was good since, I’m not sure what that would have meant if it would have changed. Gather the stuff, hike it to the elevator again…get a little lost then go to the right floor this time. We followed the tunnel from the clinic to the hospital (since it was -22 on Thursday, I know thank goodness for the tunnel right? It WAS crowded). We got to the hospital and walked the familiar halls from when Carter was 3 and 6 mo. old from his hernia surgeries. I remember the laugh Paul and I had after leaving that same entrance 3 years ago…
Carter was in the hospital for a quick out-patient procedure just like this one, a left inguinal hernia repair. Because his oxygen levels kept dropping every time they took him off oxygen, they wanted to monitor him overnight. So after a night with little to no sleep, we were happy to get to leave the next morning. Carter was in his car seat sitting on the floor next to me and we had just finished checking out at the desk. Paul went to grab the car and I turned around to say something to him and he looks at me and says the funniest thing (well it wasn’t funny at the time but we laughed our butts off after we got to the car), he says “Don’t leave your baby!” as I am like (sorry like is the only word I can think of to describe my behavior at that point) “Uh…ha…I wasn’t.” haha so Paul pulls up in the car, we get him latched and off we go. I look at him and say – “I wasn’t going to leave our baby.” He starts laughing so hard – maybe from the lack of sleep we both had or just that that whole thing was behind us and we could bring our baby home, I’m not sure, but we both had a laugh that was well needed.
So…as we walked through that entryway – on our way back to begin what we feared could potentially be another night of “monitoring” his breathing that story quickly came rushing back. And I only had to say one sentence to Paul as we walked past, “Don’t forget your baby” and weÂ both laughed about it. Breaking some of the tension of this Thursday morning.
We got registered, got our official “PARENT badges and bracelets and went back to the pre-surgery waiting area. It’s funny how some nurses are SO good with kids and the next…well I’m not sure they have ever even met a kid. Our first nurse…probably never met one. Our second and third – were great. We waited in that waiting area for 3 hours for the surgery to begin. Carter watched “Happy Feet” and most of “The Little Mermaid”. We also danced, jumped and twirled on the floor for fun. The doctors and anethesiologists came in one at a time to meet Carter and tell us what would happen. One-by-one they trickled out until it was finally time to go back. They gave us an opportunity for one of us to go back with Carter until he fell asleep. Like the kind husband Paul is, he let me decide. At first I thought, Paul should go, I don’t think I can handle it then I decided – nah i can handle it, “I think I am going to go Paul” after a quick okay and the description of what would happen, I quickly changed my mind and came to my senses. As I watched my husband put on those blue scrubs and carry our treasure down the hall, I heard Carters scratchy voice saying and waving “Byeee Byeee” and the waterfall started gushing. The walk from where I had to remain, to where his surgery was atÂ was probably about 40 yards. Do you know how long it takes to watch your little boy be carried away to surgery – – – walking 40 yards down a long hallway before he disappears behind some double doors?? All the while there are intern-like doctors walking past me with their not so concerned faces. Do you know Dr. Korev from Greys Anatomy? Kind of like that. I’m sure they see it everyday, a crying mom.
It was less than 3 minutes of being in the waiting room without Paul that he came in and gave me a big hug. It made me feel a lot better and we decided to go eat lunch. It took our minds away and made the two hours go substantially faster. At about 4:30 we got to go back to see him. His little eyes were closed and he was whiny. My biggest fear was relieved. The anesthesia danger was no longer a risk as he was awake…whining, but awake. They moved us to “Phase 2” of the surgery and we took his cords and stickers off him…removed the I.V. and got him dressed to come home. We wrapped our treasure and got him to the hotel. Carter fell asleep and Paul and I ordered room service. We got our food and sat on the floor for a romantic hotel picnic. We cheered our water glasses and exchanged our “I love yous”, said a blessing over our meal and C-Man. He slept until the next morning, around 8:30 when we carefully wiped the blood crusting his eyes shut. Once he realized he could see, he started his happy-go-lucky nature. From there on, he’s been himself. He plays with toys, he says “Maury” for more snackies and so far hasn’t rubbed his eyes at all. But as it starts to heal, it may start to itch, so we got these arm things to put on his arms so he can’t bend them. I’ll send them with to school and daycare but am hoping he doesn’t have to use them.
This weekend has nice weather and we’re excited to go build a snowman. I doubt the snowman will mind his eyes are so red. Maybe we’ll make the snowmans eyes red too. :)
For a very long time C-Man has signed the word “MORE” with his little fists banging against each other. He can even do a “whining more” when his eyes open really wide and he brings his fists towards me to add “emphasis”. But lately his team (professional therapists, teachers and Paul and I) have been encouraging him to use his words. So now he says “more” in his way “Maury!” (Like the Maury Povich show? Yes, just like that).
Tonight our menu included delectible grilled cheese sandwiches on whole wheat bread served with a side of apple sauce. Of course, boys are not patient. They do not understand “It’s simply not done yet.” So he gets to have a Ritz Cracker Appetizer. He loved his appetizer… like always, all he would eat is an appetizer if he had his way. So I give him one at a time hoping he’ll forget about the appetizers until the main course arrives. Over and over to my delight I hear “Moreeee”, all the while I think – i should say, “No honey wait for your food to come,” but i can’t help it. It’s sweet music to my ears. Hearing himÂ use his words instead of whining. It’s a breakthrough we’ve been waiting for. It’s comparative to when he first sat up on his own, (which happened aroundÂ his 1st birthday) or when he first walked (at 29 months).
He is learning so fast and although MORE sounds like Maury, i love it and i’ll take it! So now we’re working on “Maury please” and he even said “Maury fez”. Thank goodness for sweet little scratchy words.
He’s also starting to count some, that’s right people, COUNT!
I’m very proud of him and his teachers and therapists. He has a team that does a remarkable job, that helps him reach his fullest capabilities. If you are part of his team and you are reading this, a thousand thank you’s is not enough. You are truly remarkable.
I am trying to think of this week as any other.Â A busy week of work, school, therapies and the hustle and bustle of errands that typically surround our lives. This remains true about the week for about half of it. But as early as tomorrow I will be making sure all items are washed, everything we need is purchased so i can pack it for our trip to the citis for Carters little surgery/procedures. I’m very happy he is in good health and even took extra measures to keep him home and healthy this weekend. Sticking to his normal routine and plenty of time for his naptime and to bed early. Sleep is the trick to health anyway right?
Â I’m reminded of the word courage today. My son watches “The Backyardigans” often. Probably more often than he should, but one battle at a time right? Today he was watching one about Uniqua wanting to be a knight. She has to be smart and have courage to beÂ a knight. The monster in the abyss said, “Oh I would like to have courage, but I am scared of the forest.” Uniqua finished and gave me enough to think about with her reply, “You can still be scared and have courage!”
Â I think that defines how I feel this week. Even my husband (who in my eyes, always seems strong) told me he has had emotions about this week. But today is Sunday and it’s the beginning of the week. We started it with resting and a day of love. We danced to the Superbowl Half-time show (although we would have preferred Sugarland over the Black Eyed Peas). We snacked on good snackies and we played with the puppy. We developed more stories of love that I store away in my heart.
Â Next Sunday this will all be behind us and we can focus on what’s next. Every day we have Carter is a blessing. I’m so thankful for him. Thankful that God chose me. ME to be his mom. With that, I’m not sure if he needs me more, or if I need him more. But one thing is certain, we both need our heavenly father so we can be courageous and strong.
Â So this time, I’m ending my Sunday blog post with a scripture:
Â “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”
Â Joshua 1:9
Ever had an awkward waiting room moment? Which ones aren’t really?? Do youÂ play it safe and surf facebook on your phone? I tend to, until Carter makes his friendly rounds to all who are there. A similiar thing happened once in a Verizon Wireless store. We had to wait a long time in the show room while my phone was being updated (I guess I couldn’t figure it out) and while we waited he ran from person-to-person hugging their legs and saying, “Hiii” and then a quickÂ “UP!” in his scratchy Williams voice. Carter has low muscle tone contributing to his scratchy voice. It sort of sounds like the voice you hear when you have a cold – that deep voice. Yep, thats him all the time.Â In addition to theÂ “Hi’s” he also showed them all his tummy and laughed about it.Â When we left the store that night (it seemed he was able to capture the attention of nearly the whole store) including employees. Â I went to open the door and I picked him up, he waved and yelled “Buh Byyyyyyyyye!!!” and all the people waved and said “Buh Bye!” Endearing is the right word for it, I think. I get used to it, the charming little hi’s and bye’s and couldn’t imagine a life where i ever had to say goodbye to the endearing love i lug around daily, all 30 pounds of him.
So today we are at the clinic for a DEXA scan. Yep, I said DEXA – you know those scans your grandma takes for Osteoporosis. That’s exactly who Carter was endearing today, older gals who thought he was just as cute asÂ a button. As much as I agree with them, it still meant for an awkward waiting room moment. Probably more for me than anyone, because I’m sure they all thought we were there for me, not him. How I wish that were the case. People with Williams Syndrome (for some unknown reason) absorb Calcium at a much higher rate than you and I do. So much so that it can be at dangerous levels that could stop their hearts. Carter was hospitalized in late 2009 because of it. Only for 2 days while they flushed his system of it, then we got to go home with a strict no milk, yogurt… “calcium products” diet. Unfortunately, when you do this, the Vitamin D goes with it. It’s sort of one of those gray areas, he can not handle more calcium, but he needs more Vitamin D for his bones. If he lacks Vitamin D he could develop Diabetes, Asthma, Heart Disease or Cancer. Since none of us are willing to take that chance, we’re looking into our options. But before we jump into it, the doctors wanted to see his bones. Uncertaintly remains though. There is no chart for 3 yr old boys to compare his bones to. Just 70Â year-old women. But – it’s better than not looking, I guess we’ll write the journals as we go? That’s the downside to a rare disorder – not enough people have it – not enough people care to invest in the research. (But we’re working on that one too!)
Either way – tomorrow we go in for Carter’s Pre-Operation Physical and I’m hoping that will be enough time for us to get the results of the scan back. Do we start infusions or do his bones look healthy? I guess we’ll have to wait anotherÂ dayÂ to find out.
So tonight, endearing hugs, hi’s and nah nighs? Gladly my little C-Man.
Just because you get one of those letters from your local insurance giant stating your childs surgery will be considered “out-of-network” doesn’t mean it’s written in stone. I learned this first hand in the last 48 hrs. It’s not always your insurance companies fault either. This time it was my well-admired health care facility. I say well-admired because I think Sanford does an impecable job. There may be people in this town who don’t like them because they served them cold toast once, but as a special needs mom who is on the phone with “one of them” almost everyday – I assure you, they do a great job. From the nurses to the doctors, I continue to be nothing short of impressed with their expertise and professionalim. Of course, I’m sure there is a bad seed somewhere in the system, and if there was, I doubt I would fail to let them know they were beginning to let their rotten odors out, and thus far have not come across one.
Although praising Sanford for their good doings is not what this post is about… it’s about the fact that it is so simple to disregard every letter that comes from the insurnace giant or Sanford. Admittenly I have let some sit for a few days, but in the end you have to read them or at least skim. There is important stuff in there. I know, i know you are thinking – boring post! But really, if i wouldn’t have read this one letter of…well many, I probably wouldn’t have caught the fact that my sons surgery would have cost WAY more than it should have, just because of the opinion of the medical director at SanfordÂ – not reading into my sons doctors letter the way s/he should have. When you receive a letter declining coverage it never tells you WHY, no you have to call to find that out. But you are the member, you have rights.
My technique? And it truly is a technique! I constantly practice kindness. I almost overplay it. Not only because it works, but because people have empathy for you and they go out of their way to help you and to make things happen that otherwise wouldn’t have. Even in the worst of situations where the same nurse calls you 3 times from Minneapolis EMT office, telling me we need a Pre-Authorization from M.A. prior to the surgery. Each time she told me she didn’t know we had M.A. back-up, I proceeded to tell her, YES, we pay several hundred dollars a month to be a part of the program and we would very much like to utilize it. This happened 3 times and each time she told me she would get back to me when she gets a hold of them. I could have very easily lost my cool after the 3rd call, but that wouldn’t get me anywhere. And the lady already practically performed a miracle for me in getting her Doctor to put tubes in my sons ears during an already scheduled surgery so he doesn’t have to go under anesthesia more than once. (Which is a high risk for people with WS). So – kindness it is. And Thank you’s up the high heaven. Because – let’s face it, these people get paid to answer the phone and tell us answers, but no amount of money can pay them to be compationate. That,Â you have to earnÂ by respecting them. (Oh and I still haven’t heard back from the EMT office, but that’s ok because I have her number and I’ll call her in the morning and remind her of who I am).
So after my letter of denial, I am happy to say as of 12:57 p.m. this afternoon, it was approved. I haven’t gotten a letter yet, but when I get it, I’ll probably frame it! Never say never…sometimes they just don’t have all the facts.
One of my favorite quotes of all time:
“Be kinder than necessary, for you never know what kind of battle someone is facing.”