Saturday, June 12, 2010

Dear Anonymous

The night before Sophie's procedure I  received the following anonymous comment on my post Goodbye Children's Medical Center, Hello Happiness:

 Laura, it saddens me to think about what your family is going through. Personally, I am not familiar with Children's Hospital as none of my family members has been treated there, yet.

I couldn't help but notice the endless criticism of a nationally-ranked hospital by an unbiased, highly-respected publication. You complain about all of the education you went through while Nate was still a patient in the hospital and couldn't focus on all of the information because Nate required a lot of your attention. Yet, on the other hand, you complained about not being able to have your friends come visit due to the the "lock down" which was in effect to protect the hospital's patients -- including your son. How would you have reacted if your son had also caught the swine flu because anybody and everybody were permitted to visit their friends? Thankfully, he didn't and perhaps gratitude is owed to the hospital for making a huge decision to limit visitors for its smallest and most delicate patients.

Finally, please do your homework. An A1c represents approximately 90 days of blood sugar values. Since you've only been with your new clinic for "a short time," you owe a thank you to your previous providers as Nate has obviously benefited from their assistance, education, and advice which played a large part in achieving the most recent A1c.

I wish Nate all the best as he learns to successfully live with a chronic illness (and he will!). And, personally, you seem to be a great candidate who would benefit from counseling to help you deal with children with chronic health conditions. Life, for the most part, can easily be viewed as a glass that is "half full."

Dear Anonymous:

 When I 1st read your comment my feelings we hurt and then I got a little bit angry at the criticism but then I  realized --- If I am going to publicly criticize others then I need to be able to receive and embrace criticism given to me. 

So, I would like to thank you for your comment on my post and also thank you for taking the time to read my blog.  However, I would like to address a few of the points made in the comment and hopefully clear the air a little . . . .

* I notice that in the 1st paragraph you mention that you are not familiar with CMC as none of your family members have been treated there YET.  I hope and pray that you never have to know the pain of a chronically ill family member much less your own child.  Until you walk in the shoes of a mother with a sick child you will never know the heartache.  I honestly hope that you never have to know it.

* In my letter to CMC I did not mean to criticize the swine flu lock down.  I would not have wanted it any other way.  I would never want any child exposed to the swine flu especially a child that already has a weakened immune system.  My frustration was that the educator seemed put out with us because we were not able to give her our undivided attention because we were having to care for our very sick and very fussy son.  It was a tough situation for us because my husband and I both needed to learn the life saving skills we needed for our son but Nate needed out attention too.  I am in no way criticizing CMC for the lock down. We were just frustrated at the training times and the educator that was not sympathetic to our situation. It would have been a lot easier had Nate not been diagnosed in the middle of the swine flu epidemic so that Nate's grandmother could have come to the hospital to help with him but that's just not the way it happened. 

 * Thank you for pointing out my mistake in regards to Nate's A1C.  I definitely do know the definition of the A1C ---- I will add it here for those who do not know.

A1C: A test that measures how much glucose has been sticking during the past 3-4 months to hemoglobin, the substance in the red blood cells that carries oxygen to the cells of the body. The A1C test is important in diabetes as a long-term measure of control over blood glucose. Even outside of diabetes, an elevated A1C level may be a cardiovascular risk factor.

 You are right I actually do not know what Nate's current A1C is because we have not had it taken since 3/31 while we were still with CMC (it was 8.4 at that time, and 8.0 at his dx).  What I should have said is that Nate's average blood sugar had dropped significantly since we have have been working with the our new practice and we are looking forward to a great A1C result in July.

* Finally, I would like to say that although you are very entitled to your own opinion of me I am sure others would disagree with your assessment.  I do not disagree that I may need therapy for overcoming the overwhelming sadness of dealing with not 1 but now 2 chronic illnesses in my children.  But, what you should know is that my blog is my therapy and the kind people that leave encouraging comments are my therapists.

As I said previously unless you have experienced the heartbreak of having a child diagnosed with T1 or any other serious medical condition you really cannot judge me.  I have come a LONG way in the almost 9-months since Nate's diagnosis with T1.  I have mourned and gone through all of the appropriate grieving steps and I now embrace our new life and my beautiful, healthy son that happens to have diabetes.  I will do the same for my precious daughter Sophie as we tackle her challenges.  It's part of being a mom --- we only want the very best for our children and it is our job to stand up and fight for them.  It is MY job to fight for my children - - - I will always be their strongest advocate --- ALWAYS.

I am so blessed that I have a wonderful husband, 3 great children and a enormous support system ---- I would have to say Mr/Mrs Anonymous that my glass is not 1/2 full but my glass actually runneth over.

To read about a more positive experience, please read my friend, Hallie's post about Cincinnati Children's Hospital Medical Center.  I love that she loves her hospital so much.  :)


Heather said...

My hats off to you Laura! You dealt with Mr/Mrs. Anonymous with strength, grace and class. Bless your heart. Still praying for your family as you learn about Sophie's chronic illness. ((hugs))

Barb Wicker said...

I second Heather's sentiments. You know I'm praying for your whole family. Love and hugs to you! You are an extremely strong woman that I have known for a lot of years. Love you!

I have to say I give far more weight to the opinions of people who will publicly attach their names to their opinions. Laura, you put yourself and your family out there every day to help other families dealing with T1, and for that we are all grateful. And blogging, in my opinion, is not only cheaper than therapy, but far more effective. We're here for you, babe! - Mo

Love you, Laura! (((HUGS)))

I also LOVE blogging therapy!

connie said...

Blogging is GREAT therapy!!! I love it and have found such enormous comfort in not only sharing my story but also in receiving some amazing support through all of the comments that I have received on my blog from people like yourself and all my other D-mom/dad bloggers!!!

There is something to be said for surrounding yourself with others who 'get it'!!! There is great comfort in that because often times even our own extended family don't fully understand the toll life with D takes on us.

Big ((HUGS)) to you and your family!

Anonymous said...

Hi Laura, I do not have T1 but I have been seeing Dr Aranoff for 25 years and I am sure that you will have the best experiences ever. I read your blog and think that you are such an amazing person. I always thought you were special way back when and see how amazing you are now. Best wishes to you and your family.
Erica Brumit (I dont know how to do this post thing)

Meri said...

Laura, I am so sorry you had to deal with such an insensitivity. Why would this person feel the need to write such an assholish comment? They do not know you...they obviously don't have a chronically ill in the world can they criticize? Remember Dr. Seuss and his wise wise words..."Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

I am so proud how you are handling all of this always deal with things such as this honestly and head on. You are a rockstar in my book. FULL ON SHE RA!

Beth said...

Excellent response, Laura. :)

phonelady said...

Okay yeah anybody who is chicken shit enough to leave an anonymous comment on someones blog is not worth the slightest concern of mine nor any of ours who are dealing with this disease until you have walked a mile in my shoes please dont dare pretend to know what I or any one of us who has to deal with this disease on a daily basis goes through , much less hospital visit , insurance crap and the whole nine yards . And exactly who are you mr/ms anonymous to criticize anyones feelings about a certain institution ? Im so peaved right now Laura Im sorry but my butt is on fire . you want to take me on mr/ms anonymous ? Im so ready for you .

Lora said...

I also agree with Heather... You did deal with Mr/Mrs. Anonymous with strength, grace and class. You do not hide behind a mask... and those that do are not worthy of your awesomeness.

We all need a little bit of therapy... I for one am grateful for the wonderful ladies that give it to me :)

Heidi =) said...

I can't really add to what everyone else said. I did want to say that I'm so proud of you! Great response!

Penny said...

Great response Laura! And I hope that Anonymous is reading these comments left, cause maybe next time they will attach their darn name to the comment. No hit and run buddy, belly up to the bar as my Dad would say. Be a man/woman and leave your name. My feeling, personally, is that it's an inside job, someone at the hospital or someone related to someone who is affiliated with the hospital is writing it. Just a hunch.

Your response is great. People will never know the challenges of raising a chronically ill child. Then when you have two, you belong to an even smaller club. I know the club well.

As for therapy, well, yeah, we ALL need therapy, every one of us on this planet, if we are alive. It comes in many forms for many people and some of us blog about it. I say to Anonymous, that if you don't like the blog post, then something in it reflects something about YOU, and YOu my dear, might need some therapy as well.

Rock on Laura, rock on.

Amen Meri!

What a completely unproductive post by this anonymous party.

I find it telling that those of us who HAVE been there, are supportive of your assessment and reaction to the situation. Personally, I think that says it all.

PS - An A1C measurement is not truly and average of the last three months' blood sugars. Although it is reflective of the last three months' blood sugar measurements, a heavier weight is given to the most recent period of time. So had you known what his A1C was after a month with your new practice, without more detail and analysis, an onlooker is in no position to conclude how much the first 2 of the 3 months impacted a change in an A1C, if at all. An improvement in one month's time could indeed be 100% attributable to the most recent month.

I'm going on more than necessary on this point, but for example, Caleb's A1C was 9.8 at diagnosis. After 5 weeks his A1C was 7.4. I don't attribute any of that improvement to the 7 weeks preceding his diagnosis.

Wendy said...

I posted a comment from my phone last night, but it didn't show up :(

Oh, well. After sleeping on it, I have a new message...

I, personally, think Anon sounds suspiciously like an employee.

To Anon:

It's LAURA'S PERSONAL blog. She has the right to express her PERSONAL opinions. She hasn't slandered anyone or anything. She's simply discussed her PERSONAL experiences.

Health care providers, hospitals, medical supply companies, insurance companies, medical technology companies, the list goes on and on and on....TREAD CAREFULLY!!!!!


The new world of Social Media can make you or break you.

Don't forget that.

And to Laura...

Love you, Girl xoxoxoxo

As if you needed anything else to deal with right now! I agree with Heather and with Wendy!

You do not need to apolgize for what you write on YOUR BLOG. It is your opinion. And I know that you are not a pessimistic person always thinking of life as "half empty". I know that that is what our blogs are for... to get out all the crap that we feel and that we deal with while living life with a chronically ill child. And to be lifted up by others who are also living this crazy life.

To Anon: I don't care if you are an endocrinologist - if you don't personally have a child with T1 then you don't know the pain. You have no idea how you would respond. So until you do - God Forbid - you should keep your hurtful opinions to yourself.

As you mentioned in your blog - we were very fortunate to have a wonderful experience with our hospital and with the care we receive at Cinci Children's. So I KNOW what good care is - because we are living with it. Praise the Lord! And I also know that good care is NOT what you described. I don't know how we ever would have learned anything if we had not been able to have my parents in the room, keeping Avery busy while we learned. It makes me sad that not everyone has an experience like we did. I'm hopeful that your new doctors and nurses will be a better fit for your family.

Keep writing, Laura. Like Meri said, "Those who mind don't matter and those who matter don't mind". The D-Moms know you and we understand and we love you to pieces. We will lift you up and encourage you no matter what life throws your way.

Cindy said...

Oh my! Someone forgot the age old advice of "if you can't say something nice, don't say anything at all". And it wasn't you, Laura! I've been reading your blog and have not found it to be nearly as negative as Anonymous seems to. It's hard when you have a child so young diagnosed. No one truly understands until they go through it themselves, nurses and educators included! Great job in responding to whoever it was! Keep writing and telling your story. It does provide some excellent therapy for venting frustrations!

Kirsten said...

"Anonymous" is a typical internet troll. He/she just likes stirring the pot & watching people get all worked up. Simple minds, simple pleasures, I guess. As everyone else has said, you handled Anony-mouse with class. Until you've gone through something like this yourself, either as a parent or as a patient, you can NEVER know what it's like for someone else. I don't have any children and even I know that!

I once dumped an endocrinologist who was considered a 1st class researcher & a fine physician by his peers, but he was a cold-hearted bastard to his patients. You have every right to express a negative opinion of your treatment at CMC if it didn't work for you. Just as not every shoe fits every foot, not every clinic fits every patient.

By the way, the best way to handle a troll is to ignore him/her. Don't respond, and ask your readers not to respond. After a while, Troll will get tired of listening to nothing but the sound of his own keyboard & go somewhere else to stir up crap. ;)

Pam said...

God bless you and your family, and please don't take what Anon said personally. You have enough on you plate to deal with. Inhale the good air, exhale the bad, take a nap, and continue to take excellent care of your family.

Jaclyn said...

Wow...I found you by accident from a bing search for "diabetes car magnets", funny huh? My sweet Jack turned 3 last Saturday and was diagnosed on September the 8th of last year (which happened to be my daughter's 5th birthday). I am a pediatric nurse at Jeff Gordon's Children's Hospital in Concord NC and as I read "Nate's Story", the tears poured, poured because I have been there. My pediatric office tried to schedule me for November the first time I called, when I called back after dipping my son's urine and it had Large glucose and ketones, I was told to "calm down, that can be from alot of things, what time did he eat last?" I had to bully my way into an appointment, and (so similar to your story, it gave me goose bumps, our pediatrician wasn't in and we had to see someone we didn't know). I am a nurse, a peds nurse, so I KNEW, but still I was in denial... finger prick, screaming, nurse won't make eye contact and leaves, doctor comes back in and says "blood sugar is 523", I start to scream/cry/shake and my husband (who isn't a nurse) says "wait, what does that mean?" and I realize in that moment, that he doesn't know and I want time to stop, please don't say it, don't say it, don't say it.....Dr. says "he has diabetes". No, no, not my baby, it's not fair, no!! Then I realize that my husband knows nothing of type 1, he only knows about type 2, he has no idea that this will never go away, that the finger pricks and shots are forever. Suddenly, I remember our daughter Maddy is with my grandmother and it's her birthday. Oh God, I have to tell our family. Oh God, this can't be happening.

Of course we are admitted to JGCH immediately, and this is where our story is very different. As I read your story, I was blown away that A. you had to go through ER (you should have been a direct admit to the floor and they should have done all labs/IVs) B. WE NEVER HOLD KIDS DOWN! we use Emla or Synera to numb spots before we stick and we do "holding for comfort" and a parent hugs child belly to belly, we have Child Life Specialists who distract/talk to child during sticks. It's still scary, but it makes a HUGE difference. I got so angry when I read anonymous post, if they are an employee, they are clearly not a Peds nurse, and you were right to criticize (though I really didn't feel you were criticizing, you were telling YOUR story, from YOUR point of view). I am sure my story and my husband's would be completely different if you asked us and we were there at the same time with the same child. The education IS overwhelming, you are dealing with raw, hurt, scared parents and a screaming child who is most likely "HI" or "LO" and terrified of anyone who walks in the door because people keep poking him! He wants to go home. His parents are crying. He wants to eat/drink what he wants and he wants it now! His sister visited and she is crying because she wants her parents home and she doesn't understand why people are hurting her brother and mom and dad aren't stopping it. (Again, our story differs because we were diagnosed one flu season later than you and the 'lock down' wasn't in effect) I can't imagine going through that without my husband with me every moment. And I worked on the floor during the Swine flu season, it was horrible. I understand why the restrictions were in place, but for single moms with no support system and other children, heck for 'normal' families, it was horrible.

Jaclyn said...

ran out of room...So, I ramble, but my point is, I feel you girl. My daughter is healthy (although, she had a horrible pneumonia on Halloween and we were admitted for 5 days (in the exact room of jack's diagnosis stay) and Daniel had to take off work all week to keep Jack because we still have NO ONE who is comfortable/capable of managing him even now that he has a pump).

I am thankful that I found you. bing! and I will follow/share with you from now on. And screw anonymous! until you have worn these shoes, don't judge, some days it takes all your strength just to breath in and out. Keep up the strength and good work, keep sharing, it helps 'us' as much as it helps you. =)

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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