I feel as if I'm living in a fog state right now.
I can't sleep, eat, I'm worried out of my mind And I feel totally sicken to my stomach.

Right now I can't give all the history on my DD as it's just too painful and there's just too much to be told.

My DD was DX last year with type 2 (insulin resistance ), she has a weight issue that we have been trying to get under control, but thus far everything has failed and the Doctors and myself can't figure out why these diets and Meds are not working, ( We are going in for further testing with possible Bi op's ) to try and find out why she keeps gaining weight even on a VERY strict diet and Meds they are not working, and yes we are VERY VERY FAITHFUL with her diets and there are no cheating on them.
Less than 30 Mgs sugar, Very limited salt intake ( we keep it under 80 Mgs even tho she's allowed 300 Mgs,Carbs are limited to no more than 25-30 Grams, we stay in this limit FAITHFULLY ) but despite all this she had developed High blood pressure , her sugar is WAY too high, she failed her 2 hr fast test badly 2 weeks ago. but this is nothing compared to the news I got yesterday.

My baby girl of only 11 years old has Heart Disease. her heart is 46% larger than a full grown person. Her heart grew thick from the Inside rather than the outside ( which is worse ), She has had a Heart Problem they said since she was born but we never knew it.( they did find a heart mummer at birth , followed it closely but said @ age 1 it was gone ).

My little girl also has NASH (Nonalcoholic steatohepatitis )
Nonalcoholic Steatohepatitis
I'm so beside myself I cant think straight, I haven't slept since yesterday. I feel so sick to my stomach, I'm so worried. The doctor has not helped as I became very very upset yesterday I couldn't stop crying as he was telling me the results, He tried calming me and so did my mother, but I just couldn't bear to hear this news about my little girl. The doctor said this wasn't the worse of her test and refused to tell us more form fear I wouldn't be able to make the drive back home ( over an hour and half drive ). I'm calling in the morning to set another appt up as I cant go thu not knowing what else is wrong with her.
For the life on me I can't think of anything worse than being told your child has liver and heart disease.

I would like to ask of my Online Family if you believe in a higher power as we do would you please place her on a Prayer List ? Her name is Christine, She's 11 years old.

We are calling their Church in the morning to be added. But you can never have too many prayers said.
When we find out more I can update, But for right now this is all we know.
Thank- You all so much.
1ST I would like to Thank everyone for the support and Prayers, this means ALOT to us. Thank- You all very much.
I called the Doctor's office today and received the call back. Christine's Doctor is gone out of town till the 21st, But his Asst pulled her chart and we went over the test results. It's not very promising as of right now.
Christine does have permanent Heart Disease, We can only manage the problem and try to stop any more damage to it thu diet and excises., Not the news I wanted to hear, But I'm staying faithful this will not advance.
She also has damage to her liver, to what extent we will not know. the asst felt more than sure she will have an order for a Bi-op soon, as this will be the only way to see what and how much fat is in her liver. Since the blood test can't DX or rule out if this is NASH or true cirrhosis or just a Fatty Liver.
I wanted to explain a little more about why this came down so hard on me.
I had a sister that died when she was 14 years old with diabetes.
I also had a sister to die at age 27 with cirrhosis of the liver, She lived nearly 10 years before she was called home to be with the Lord. Have already been thu this 2 times with my Sisters the shock of hearing my little girl has the same thing that took my Sisters from us was hard and shocking. I don't know which one of us is in a fog more me or my Mother as she was older and went thu this with her own children. I can only remember my oldest Sister going thu this as I lived with her till 2 weeks before she passed away, ( She was like a Mother to me )... I'm staying strong for Christine and I do have a wonderful support group Online and in life, This is helping me get thu all this.
Christine 's doctor she sees is a Doctor of Gastroenterology
She is also under one of the best Disease Management centers in the State.. I found out today her Doctor will manage her Liver, but she might be refer'ed out for her heart to another specialist , will find out on the 21st.
Christine had a really terrible day at School today, It was 102* here and they took the Girls OUTSIDE for PE, She became really ill and was sent to the Nurses Station, I got a call about an hour later from the School...I told the Nurse she is NOT allowed outside in this kind of Heat, If she can't attend PE inside the Gym then she needs to go to the Study Room. The Nurse agreed and wrote it in her Folder. BTW they don't have a Gym right now as the School is being added on too and where the Gym is is where they are building. But PE was "Suppose" to be held in another part of the school NOT OUTSIDE, esp in this heat. Heck a Health child shouldn't be outside in 102* weather, the air is really thick . My 8 year old came home couching his lungs up from the thick air, had to go get his inhaler for him. Over all, We are taking all this in and trying to get pass the shock of it all, Christine doesn't know how bad things are for her, She believes that she ONLY has some trouble with her Sugar and that her heart it too big ( She was in the room with us when the Doctor was telling me about her tests.)I feel it's best she keeps thinking this. Well thats about all I can update on for now.As soon as I hear back on the 21st for the Doctor I can give a little better update on things. Again Thank- You all so much for the support and ESP the Prayers, this means the world to us.

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No problem on saying prayers for your family and for your daughter Christine. I will pass this on ot some wonderful people on another forum I belong too, we have a Indian healer on the forum and if you dont mind I will ask that he perform a healing ceromony in Christine's name

Christine's are a tough bunch trust me I know I am one, I shouldhave been dead last September and a few other times, but I keep on takng a licking and ticking.

I would suggest that perhaps you yourself get some counseling from a therapist as someone who is chronically ill it has helped me immensely and my DH has been to counseling to learn how to deal with my chronic health issues and its good to let it out to someone not in the family.

I dont know if your hooked into or close to a Childrens Hospital but I would try to see if they can get you into one to see a cardiologist, nutritionist, endocrinologist and I think a gastroenterolgist is the one who deals with livers because thats who dealt with and watches my liver issue.

Take a deep breath and know your baby girl is being prayed for, no matter if they are 11 or 21 they are always our baby's


{{{HUGS}}}

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

first thing is get yourself together. Yes, this is devastating news. Yes, I know you are scared to death, sick with fear and basically beside yourself with grief. And that's OK. You should have all those emotions, but you need to get yourself together and prepare for a long road ahead. Your daughter needs you. Find a support group, get counseling--these will be beneficial for both you and your daughter. Find a child support group for her to hook up with. It's important for her to see the good outcomes and the bad...

I know I would feel like the life was drained out of me to hear that one of my children was sick.

I highly recommend a children's hospital. My family has experience with Arkansas children's Hospital (in Little Rock, AR.) And I can tell you, the staff at ACH (and more than likely all children's hospitals) are your best resource for information, support and strength!

You and your daughter are in my thoughts and prayers. May God grant you peace and serenity to handle the difficult times ahead.

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

gosh, what a horrible prognosis for your little girl-will keep her in my heart and prayers-hopefully thinking that someone is missing somethng somewhere as far as her diagnosis goes-it just seems too unfair. Please keep us posted....

I will keep both your daughter and your entire family in my prayers.

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We are the Bears Shufflin' Crew
Shufflin' on down, doin' it for you.
We're so bad we know we're good.
Blowin' your mind like we knew we would.
You know we're just struttin' for fun
Struttin' our stuff for everyone.
We're not here to start no trouble.
We're just here to do the Super Bowl Shuffle.

Oh I feel for you and her. Try not to be too terribly frightened by the new on the heart. I've been doing echocardiograms for 15 years. The thickening you are talking about from the inside goes with the diabetes. Diabetes damages the kidneys. The kidneys and the heart are directly related as far as the blood pressure goes. I would guess her blood pressure is probably also high resulting in the heart issue now. It's hard being the parent and seeing your child suffer. You need to get strong and stay strong for her sake. She is going to need you!

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I am so very sorry for such devastating news. I pray your little girl will be ok. I have an 11 year old too and I just can't imagine finding out something like this. I have an 8 (almost 9) year old that the doctor's thought had polycystic kidney disease at birth, but then the Arkansas Children's Hospital found a different diagnosis (she has a multicystic dysplastic right kidney). She's 'fine' today but can't play rough sports or anything that will risk her other kidney that is enlarged and compensating for the right kidney. She can get into serious trouble healthwise also if she gets a kidney infection, bladder infection, etc.

I second getting her to a great children's hospital asap. I wonder if the diabetes caused the damage to the heart as it sometimes does rather than her having it all these years. I would press the doctors to send her on to a wonderful children's hospital quickly. Most of the children's hospitals have an apartment like 'room' that you can 'live' in while your child is hospitalized too. Check into that as it is free at our state's children's hospital. You didn't say if you were married, etc., do you have anyone at all that can just go and be with you? Drive for you? I honestly don't think I could have made that trip to the children's hospital by myself in the condition I was in emotionally either. We're praying for you guys. Please keep us posted.

I'm so sorry your family is going through this. I will keep you all in my thoughts and prayers. Stay strong.

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I am sorry to hear of this very disheartening news. Get some support for yourself, brace yourself, and please prepare yourself to hear the rest of the news the doctor has to tell you. You need to know it all to be able to start to deal with everything in it's entirety. And, always get a second, specialized opinion. Not because you don't believe the first, but because a second doc might be able to fill in some of the blank spots that you are not ready to hear now.

I truly am praying for your family, your daughter and mostly for yourself and gaining the ability to handle this with the superhuman strength that Mom's often need. Hugs and caring sent your way too.

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"Well-Behaved Women SELDOM make history."Laurel Thatcher Ulrich


"Yesterday is but a vision, and tomorrow is only a dream. But today well lived makes every yesterday a dream of happiness, and every tomorrow a dream of hope." Anonymous

"Your candle does not lose it's light by lighting another candle" Generosity

Have the courage to be yourself.

I am so sorry about your little girl,I will keep you and your family in my prayer,

Christine, you and your family are in my prayers.

Stay strong for your daughter and family - they will follow your lead. You are a strong, good mother.

Please keep us updated on Christine's condition!

And please take care of yourself - your daughter is depending on you now more than ever. She'll be looking to you to see how she should respond to her illness, too. Please look out for your own health - lie down, eat right - do all you can to stay as healthy as you can so you can continue to be a pillar for Christine.

We are rooting for Christine and you all. Please keep us updated!

D

praying right now for Christine, you and your family.

I just said a prayer for you and Christine,for God to give you the strength to deal with your situation. I know this may sound ridiculous right now,but please try to stay positive for both you and your daughter's sake. For one thing Dr.'s don't know everything and they can't predict the amazing healing that prayer and proper nutritional guidance can have. I speak from experience-my brother has been battling leukemia for 3 years,went through a bone marrow transplant ,did awesome and in a rare twist cancer somehow got into his central nervous system and gave him a brain tumor. The Dr. told me there was a 15% chance of survival and I told him that someone makes up that 15%and why couldn't it be my brother. After treatment for the CNS cancer/tumor my brother became very ill,was on a respirator for 10 days-I prayed and prayed. He came off the respirator only to find out that he was paralyzed from the waist down and after an incident at the hospital where he was dropped,he became quadriplegic. We just kept praying & encouraging him and providing him with natural nutritional supplements-he had previuosly had no appetite & was wasting away. I was so amazed at the ignorance of the Dr.'s when it came to nutrition. My brother had only bites of food over the course of weeks and I would plead with the Dr.'s-they told me his protein & albumin levels were ok,so he was fine-HE WASN'T FINE,he was wasting away,his levels were OK because his body was leaching it from other sources-his bones & teeth.During this time,my sisters & I took it upon ourselves to start our own nutritional therapy-something we had seen help him through chemo & the transplant-but this time we were even more aggressive. My sister has been heavily involved in Shaklee with natural products for cleaning and nutrition-they keep the toxins out of your home and body.(even Oprah uses Shaklee products and loves them-and you know how thoroughly she investigates things )I was a skeptic for so long,until I saw the results it had with my brother and then with myself when I began taking them to prepare myself for the transplant(I was his bone marrow donor). I am truly amazed-it does take time to see results(my own personal experience,within a month of taking Nutriferon(an immunity building complex) I stopped coughing and had extrme improvement with allergies I'd suffered with my whole life.
Everyone is different and reacts differently,but it's sure worth a try to improve ones health. If you want or need nutritional advice,I can put you in contact with my sister,who is at a Shaklee conference right now in Nashville-just PM me. I'm not trying to push my beliefs on you,just to tell you to have hope and that there are so many reasons to be hopeful for your daughter and to stay positive. Currently my brother is at home after 6 months of hospitalization & rehab. He had regained strength in his upper body & the use of his arms.Last week he was able to move some upper stomach muscles-might not sound like much to most of us,but it's incredible progress for us-and he's still alive and cancer free. Each time we go to the oncologist they say they are amazed at how his bloodwork continues to look better & better. They credit his miraculous survival & comeback to family support and while I do agree it's been key, I give glory to God and to the nutrional support. Just remember,there is always hope. Educate yourself about your daughters condition and"look outside the box".Think about this -the Dr.'s don't seem to ackowledge the importance of nutrition and many also don't acknowledge God as a healer-yet we know he is. I wish you all the best and I will continue to pray for your family and your daughter-Miracles are out there,I know because my brother is one of them-he's beaten all the odds and I pray that Christine will too!

I do not pray but my cousin does and I will have her add your DD to their church prayer list

My thoughts are with you....

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Proud to say I haven't shopped at a Wal-Mart since Sept 2003

I am so sorry and i will pray for her and your family.

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SAHM of Bailey 12, Tyler 10 , Emily Ann 6, and Ryan Matthew 4 yrs old.

I'm so sorry about this news. I will keep good thoughts for you.

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"Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God? " ~Epicurus

I just wanted to tell you how sorry I am that you're going through this. I can only imagine how difficult it is. Please keep us posted. Sending many good thoughts your way!

I am sorry to hear of the diagnosis.

I do have a couple stories to tell though.

When <WE> got the first phone call from our allergist at Childrens (Boston) telling us the allergies she has, we were just dumbfoudned... clueless, even, back then.

I mean - milk, we knew, peanuts we guessed... but add in the majority of foods, and we were lost... We hung up the phone, and it took my wife a LONG time to recoup, to come up with a gameplan... A plan without the majority of foods (no, milk, egg, wheat, nuts, peanuts, fishies, shellfishies...)

And when I tell people about her allergies, I tell this story...

One visit to Children's, the 4 (or 5) of us were getting in the elevator... and a voice yelled 'Hold the elevator, please'. So I did.

And this mom was pushing this girl, in a wheelchair... The girl was around 7 (the same age as my oldest, who was with me..). She was wearing a towel on her head, and looked VERY VERY tired.

The mom looked tired too - beaten up, really, not black/blue, just 'Tired'.

My oldest looked at this little girl, in the wheelchair, and pulled my coat, and motioned for me to bend down, so she could whisper something to me. I told her to wait.

The mom/daughter get off, and wheel away... I bend down to my daughter, to listen to her question:

Daddy, why didn't that little girl have any hair?

The amount of allergies my other daughter has all of a sudden got QUITE meaningless at the moment in time, and this story gets repeated to newbies time and time again, in hopes that it helps them put things into perspective.

It might not help your specific situation. And Im saying a prayer for your daughter. I do hope it helps.

jason

I will keep your family and your dear Christine in my thoughts and prayers.

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Brenda

GO #24 JEFF GORDON

I believe that prayer does help us get thru our problems.

Sending Hugs and Prayers your way,
Shirley

*

I believe that prayer does help us get thru our problems.

Sending Hugs and Prayers your way,
Shirley

*

OMG, that is a lot to take, especially for an 11 year old. My advice to you is to get yourself together and start focusing on what you can do to help your daughter. Some of these problems may have been there all along or may be caused by other things she already has (diabities, etc.), so it may not be that she has 'suddenly' developed all these problems.

When I was pregnant with DS#2, I was told he had something wrong with his heart, then I was told he had markers for Down Syndrome. He was born healthy with no signs of Downs or a heart defect. Just this past summer I was told that he has a heart murmur, but that it is considered 'normal'. My Dr. only told me in case something were to happen to DS (like an accident that landed him in the ER) so I would be aware of it and know it wasn't something new. DS's murmur doesn't require any special medication or precautions -- my Dr. said lots of children have it and their parents never know about it and that's ok.

Find something you can control and do it -- maybe it is getting a second opinion or finding a specialist at a Childrens Hospital as many have already suggested, maybe it is reevaluating your daughter's diet with a different nutritionist. Just find something and do it. Also, don't rule out exercise -- even simply walking.

Exercise can be a very powerful thing in restoring health, especially heart disease related. My DH is at very high risk for heart disease and high colesterol. He hates taking medication and both his parents are on a ton of medication for these conditions and others. DH decided he didn't want to be on medication, so he started exercising. Amazingly enough, his blood pressure and colesterol when from 'sky high' to excellent in less than a year without any medication. The only thing he's done different is exercise and slightly improved his diet.

Hang in there and look for the positives of this situation (yes, there is something, you just have to look for it).
Sarah......mom to Jason & Devin

I will certainly pray for your family and your little girl. Prayers DO make a difference!! Hang in there and be strong. We went thru my son almost dying at age 17 and it was horrible but I knew I had to be strong for my son. He couldn't see me be upset because it would upset him. I would definitely get another opinion just to be on the safe side. Please keep us updated.

(((HUGS)))

I will pray for your little girl each and every night. I'll also pray for the Lord to lift you up as well.

When your head is clear, please remember that knowledge is power - find out every single thing about her condition that's out there, join support groups, even get a second opinion. The internet is a powerful tool, and if you need any help searching every one here will help you search.

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Catt
~ Mirror Mirror on the wall, I am my mother - after all! ~

Praying hard for you all here in Wisconsin. Please keep us updated. We care!!!

As you share with us what you are going through, maybe someone here will have knowlege that can help you.

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Donna

I have been praying for you and your daughter and have asked others to also pray.
I am also going to pray for those on this board who do not believe or pray.
They will be put in with my prayers for a very dear friend who also does not believe.
If anyone wants to join me, maybe we can get a few more to know Jesus and pray also.
When it comes right down to it, all we really have is prayer.

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Square dancing is friendship set to music!

I am praying for this little one,when my mom had a operation on her heart ,they put in Porcine tissue heart valve about 5 years ago,I call TBN - Trinity Broadcasting Network for them to pray for her,she came out o.k I believe in pray and pray really works especially when you believe.

May God bless you. I will pray for you and yours.

You and your family are in my prayers

((((((((HUGS))))))))

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I am so sorry to hear this news about your little girl. My thoughts and prayers are with you. Try to take things one step at a time, one day at a time.

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Raising my baby RIGHT!!!!!!

All the cool babies are wearing cloth!

Well, he couldn't help under those circumstances, could he? I can understand being upset but you really do need to hear what he has to say so that means you'll have to pull yourself together long enough to listen or appoint someone to listen for you. Maybe it would be easier for you to wait outside and let the doctor tell your mother the results of the tests and his recommendations for treatment.

I think it's a horrifying situation and I feel sorry for you and your daughter. It sounds like you have a tough road ahead but it could turn out fine. Your 11 year old daughter really needs to believe that it will so you need to be brave for her sake. Attitude and outlook can make all the difference in recovery so it's important not to let her see how scared you are.

I think contacting a children's hospital is a great idea. They can refer you to support groups and even help you with the medical issues and dealing with doctors. They can help in a lot of ways.

I hope things go well for you and your child and I'll pray for both of you.

I will pray to God to heal your daughter and to give you strength as you go through this.

With your explanation of your past family experiences, it is even more understandable how this has affected you so deeply and immediately. I am so sorry this continues to be a challenge to your family. I will keep you and yours in my thoughts and prayers.

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"Well-Behaved Women SELDOM make history."Laurel Thatcher Ulrich


"Yesterday is but a vision, and tomorrow is only a dream. But today well lived makes every yesterday a dream of happiness, and every tomorrow a dream of hope." Anonymous

"Your candle does not lose it's light by lighting another candle" Generosity

Have the courage to be yourself.

Okay, I just scrolled through everyone else's replies to make sure I could make my point about your dau. being forced to take PE (period, especially w/no accomodations, grrrr!)
Does your dau have an IEP? If so, you *must* make sure this sorta crud is covered, in writing. If not, you *must* get her an IEP!
Hang in there toots, you are a great mom.
We have many sn kids in our fam, it's never easy, is it?
Just because of your fam history, that doesn't mean you dau will go that same route, especially with advances since then.
Prayers are on your side from my fam of (currently ;-) 7, your fam, your dau is our major prayer focus *now*.
MZ

Sending prayers to you, your precious little girl & your family. Stay strong and enjoy the moments you have together right now!

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We're off to never never land

I've lifted Christine up in prayer.

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No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him. 1 Corinthians 2:9

The power of prayer had done wonderful things.. keep your head up and fight this with her.. we will all be here for your down times.. My thoughts and prayers will continue to be with you and your daughter.

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Too many people spend money they haven't earned to buy things they don't want, to impress people they don't like. - Will Rogers

IEP is a VERY good idea. If school just started, and you just got the DX, I can understand not having one yet...

We have a 504 plan for our daughter (with Food allergies). I've heard the buzzwords enough to know..

Hugs. So difficult. Just be strong.

jason

God Bless you and your family!!! I will add all of you to my prayer list!!!

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Carolyn
At the Jersey Shore

I have been praying for your family and Christine since first reading this post several days ago. Thanks for posting the update; I've been thinking about you and her a lot.

Stay strong - many people out here care and are praying.

Susan

Hope things are going better with your daughter.

Wow that is alot to take in you & your dd are in our thoughts & prayers I have a 12 yr old dd so we defiently be thinking of you guys & prayers

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mom of 3 greats girls

I will definately be praying for your daughter as well as you and your family. This is absolutely horrific. I am so sorry and hope that the God will keep you close.

If there's anything that I can do for you or your family, please let me know.
Prayers & hugs for you all.

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email is moserlara@yahoo.com

((cyber hug)) I am out of words right now..you, your family and Daughter are in my prayers!!

I also want you to know that you are in our hearts and prayers here is south florida. Try to be strong for your daughter and know that you have many people in cyberspace that are rooting for your family.

Judi

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"Try to see the glass half-full."