Some unexpected perspective...

[EmmasMom]

So our recent trip to Denver did not exactly go as planned. Our flight there was delayed, our hotel driver failed to pick us up, we had to catch a smelly cab because it was too late to pick up our rental car, then the next morning we were off to the ER before we were even dressed, (via hotel van), waited for an hour to be picked up (by a different hotel van that didn't bring her car seat). By the time we got back to the hotel it was too late to eat so we ran into McD's in the parking lot where Emma immediately slipped in a puddle of water and hit her freshly glued head on a table... :eek: seriously! She was, of course screaming hysterically so I just picked her up and left. We had 25 minutes to dress and get ready for the endo appt... and no time to get our rental car... so back on the shuttle, back to the hospital where we waited well over an hour to see her endo (very unusual), and didn't have time to see anyone else on her "team" because we had to power walk through the snow from the BDC to the Children's hospital (about a 5 minute walk) to get to her rheumatology appt on time.

By the time we were done with that appt it was dark outside and we sat waiting yet again for the hotel van. They said it would be 15 minutes so we put Emma in a wagon, (she was beyond exhausted) and walked around in the unbelievably beautiful hospital. We were invited by a volunteer to decorate Christmas cookies and visit with clowns... fun!
We were surrounded by very sick kids, but one really caught my attention. The beautiful little girl next to us had 5 IV pumps, no hair and a shunt delivering chemotherapy directly into her brain. I tried not to stare, but when her dad picked her up to help her back to her wheelchair I couldn't help it. He had to hold her up while she maneuvered her weak, frail little body and numerous tubes around to get into the chair. She couldn't even stand without his support.
Her family will certainly be spending Christmas in the hospital, and it will very likely be the last one they have with their little girl. It totally put my day in perspective, (more like shook me to my core) and made me realize how incredibly lucky we are.
I left the hospital that night feeling grateful that we "only" have to deal with D and JRA and that no matter how hard it can be to manage from day to day... it can be managed.:cwds: I hope I never forget how lucky we really are.

[thebestnest5]

The right perspective is a very good thing; thank you for sharing.:cwds: How is Emma's head? When I read she hit her head at McD; I winced. That must have been excruciating.

[akrickard]

I know what you mean. My mechanic's son was diagnosed with AML M4 Leukemia about a year ago. They just found out his bone marrow transplant failed and have only experimental treatment options left. I think about them and feel lucky about our situation.

[kel4han]

Amen. I think about this alot too, and some days we need reminders.

[Kristalfrissy]

I totally agree with you. Jaden was just recently dianosed and one of the nights-my dad walked me out to my car to go home and take a shower and was saying how sorry he was that were having to deal with this and that is what I told him. We were at Cook's Childrens in Fort Worth which of course handles all kinds of serious stuff and I was thankful that is all we have to deal with. I took Jaden up to one of the play rooms and sitting at a craft table was a little girl with a surgical mask, a little girl who was in a wheelchair and had just had back surgery, a little boy who had sores all of his face that were bleeding-as if his face was peeling off. I felt so sorry for them and so thankful at the same time. It could definatley be worse!

[Twinklet]

What a nightmare you've endured this trip! ACK!

We are at Stanford 1-2 times a month for Emily's CGMS study and I'm always grateful we "only" have D after we've left. Funny how emotions are, though: I "forget" after a week or so and it only takes a few tiring days of dealing with D to make me feel ungrateful, irritable and sometimes angry when I see healthy kids at school. I suppose I need another trip to to a Children's hospital to set me straight.

Thanks for sharing.

[EmmasMom]

Funny how emotions are, though: I "forget" after a week or so and it only takes a few tiring days of dealing with D to make me feel ungrateful, irritable and sometimes angry when I see healthy kids at school.

Me too. D can be so hard and it gets totally overwhelming and I hate it when people say "well at least it's manageable" :rolleyes: but I guess I really needed that reality check during this trip.

I'm sure I'll need another reminder in a few weeks, but I'm really trying to keep it all in perspective.:cwds:

[wendyc]

I left the hospital that night feeling grateful that we "only" have to deal with D and JRA and that no matter how hard it can be to manage from day to day... it can be managed.:cwds: I hope I never forget how lucky we really are.

Amen!
Amy, we had a very similiar experience last year when Abby was going through all the celiac testing. We were at Children's in Boston at Thanksgiving, and while we were able to leave under our own power and by our own choice, there were so many kids, who to them, it was home.
We are so lucky. Lucky there are great kids who show us how brave they can be, lucky that some higher being is giving us the strength and knowledge to manage our kids diabetes, and lucky that we are living in this century with all it's medical advances.
I am incredibly thankful!

[thebestnest5]

What a nightmare you've endured this trip! ACK!

We are at Stanford 1-2 times a month for Emily's CGMS study and I'm always grateful we "only" have D after we've left. Funny how emotions are, though: I "forget" after a week or so and it only takes a few tiring days of dealing with D to make me feel ungrateful, irritable and sometimes angry when I see healthy kids at school. I suppose I need another trip to to a Children's hospital to set me straight.

Thanks for sharing.

You described me as well...I get upset with myself because I know that I should be thankful it's only D. :o

[caspi]

Amy, you have me in tears here! We truly do have a lot to be thankful for when we put it all into perspective. Sometimes we just need to slow down and really stop and think about it. Thanks for allowing me to do that today!

I'm often telling Cameron that one of the blessings of diabetes is that he is learning at a very young age how to eat healthier. Not that I was feeding him cubes of sugar before, but you know what I mean! ;) Our children will grow up taking much better care of themselves because of D. Something else we should all be thankful for!!

[Amy C.]

It never works to tell parents of newly diagnosed children that it could be worse. They resent that statement a lot.

It takes time living with the disease and then comparing your life with someone whose child is much more handicapped to gain some perspective.

[czardoust]

i think about all the people who just drop dead without any warning because of a hidden heart problem or silent blood clot..... at least we know about Kat's D to treat it, so she can have the chance to live a full life. we just had a neighbor die suddenly. 4 months after his wife died suddenly, and both were in their 40's and "healthy". whats really sad is that Randy (husband) died on what was going to be their first anniversary. im glad Kats health problem is not hidden.

[AlisonKS]

I have a long prayer list after Tony's last hospitalization. A boy a little bit older than him is waiting for a second transplant, his mom and I would talk for a bit while he was napping and she was grabbing coffee. Tony made friends with a girl who had to wear a colostomy bag, I'm not sure what was going on with her but she lived at the hospital and had no family staying with her :( Then I saw tons of cancer patients when they had all of the kids upstairs on their own radio station (tx childrens). Does put things in perspective!

[Hollyb]

Beautifully said, and a good reminder. thanks!

[Dana]

I agree. Well put.

[Lindy]

I agree too - we have friends with a little boy the same age as Cooper - their situation is much more heart wrenching and far more life threatening.. yes the big D is serious - and there can be complications - but for the most part our children can lead fairly normal lives and I thank god he gave us this challenge and not something more! thanks for a reminder!

[KatelinsMom]

I also came into a reality check this past August. My daughter is dealing with many things, not just diabetes, but when my husband's brother had twins (boy and a girl) in August, I learned how lucky we are. His baby daughter was born with Junctional epidermolysis bullosa - herltiz type. Thankfully the baby boy does not have this condition.

Infants born with this usually don't live past seven months of age, they are in a lot of pain, and every time they are touched or picked up, there skin forms blisters and sloughs off. A diaper change takes about three hours to do. I cannot imagine waiting for one of my brand new twins to die and not be in pain any more.. It totally breaks my heart. Right now, Sasha is losing weight and has stopped eating, due to these lesions forming internally. It won't be too much longer for her.

[Brensdad]

I also came into a reality check this past August. My daughter is dealing with many things, not just diabetes, but when my husband's brother had twins (boy and a girl) in August, I learned how lucky we are. His baby daughter was born with Junctional epidermolysis bullosa - herltiz type. Thankfully the baby boy does not have this condition.

Infants born with this usually don't live past seven months of age, they are in a lot of pain, and every time they are touched or picked up, there skin forms blisters and sloughs off. A diaper change takes about three hours to do. I cannot imagine waiting for one of my brand new twins to die and not be in pain any more.. It totally breaks my heart. Right now, Sasha is losing weight and has stopped eating, due to these lesions forming internally. It won't be too much longer for her.

My God...I can't even imagine. Please pass along our thoughts and prayers.

[hold48398]

I also came into a reality check this past August. My daughter is dealing with many things, not just diabetes, but when my husband's brother had twins (boy and a girl) in August, I learned how lucky we are. His baby daughter was born with Junctional epidermolysis bullosa - herltiz type. Thankfully the baby boy does not have this condition.

Infants born with this usually don't live past seven months of age, they are in a lot of pain, and every time they are touched or picked up, there skin forms blisters and sloughs off. A diaper change takes about three hours to do. I cannot imagine waiting for one of my brand new twins to die and not be in pain any more.. It totally breaks my heart. Right now, Sasha is losing weight and has stopped eating, due to these lesions forming internally. It won't be too much longer for her.



OMG I have never heard of this. I am sick to my stomach reading this even. My deepest thoughts and prayers are with your husband's brother's family.

Mia lost a classmate in her PreK class a year ago to a brain tumor. We too are thankful that it is "only" D we have to deal with.

[Brensdad]

I sometimes wonder if there are parents out there whose kids have health issues and see our D kids and are grateful it isn't D...

[twodoor2]

When we first got out of the hospital after my daughter's dx I felt so sorry for her, and I am ashamed to say, I felt so sorry for myself. However, I recovered from that quickly because there are so many illnesses and diseases that can be terminal and painful as well, like Lou Gehrig's disease, or some cancer. I knew a young man that died a slow and painful death for two years from Lou Gehrig's disease. He was dx'd right after he got married. It was incredibly sad.

Only 80 years ago, we would have had a similar situation with our children - they would have to struggle to stay alive. 80 years ago, D meant a slow and cruel end. However, I am grateful that we have modern insulins and "smart" therapy for it so that our children can grow up, have childern of their own, go to school, be active, etc. . . I am so grateful that I didn't have my DD 80 years ago. I'm grateful for lots of things, too long to list here. In the coming generations, I know there will be a cure to D - it's a matter of time before this disease will be wiped off the face of the earth.

Thank you for that story, it really puts things into perspective.

[sam1nat2]

thanks for sharing this perspective. I've known way too many people, both young and old who have suffered from horrible diseases and died well before their time.
I feel fortunate that my only real health issue we are dealing with is D, and it hasn't slowed us down as a family one bit. Yes, lack of sleep, but at least we know that we have many many more nights with him, that our time isn't limited.

[Adinsmom]

*tears* These posts make me count all of my blessings. Best wishes to you all.

[badshoe]

I sometimes wonder if there are parents out there whose kids have health issues and see our D kids and are grateful it isn't D...

I used to be one of them. Mr. I hate Needles. I remember once thinking life was great and I had cool kids. I was happy I didn't have to give them shots every day.

NEVER THINK LIKE THAT

- Kara will kick your A*s

LOL

[lisalotsamom]

Poor Emma--what a day for her :(

I agree about the perspective. Our ped endo shares reception space with a pediatric oncologist/hematologist office. Every time we are at the endo I get my reality check.
Those sweet children and their families are dealing with so much. I'm sure they'd give anything, do as many blood sugar checks, be up all night treating lows, worry about 504's, etc.....just to know that with vigilance their kids can live. I'm not making light of any of our problems, but when lightening strikes with childhood illness/chronic medical crap--I do have my moments that I'm thankful Tessa *just* has JRA and Diabetes.

[Twinklet]

I sometimes wonder if there are parents out there whose kids have health issues and see our D kids and are grateful it isn't D...

I can't tell you how many people shudder when they hear Emily has T1D and say to us, "OMG, we could never do what you're doing. I could never give my child a shot or poke their fingers."

I always say, "Yes, you could if their life depended on it."

:rolleyes:

But I do know a few Type 1 parents IRL who take poor care of their children because they can't get past the emotional aspect of frequent testing and shot-giving. I am not kidding! Very sad.

[frizzyrazzy]

The beautiful little girl next to us had 5 IV pumps, no hair and a shunt delivering chemotherapy directly into her brain. I tried not to stare, but when her dad picked her up to help her back to her wheelchair and I couldn't help it. He had to hold her up while she maneuvered her weak, frail little body and numerous tubes around to get into the chair. She couldn't even stand without his support.
Her family will certainly be spending Christmas in the hospital, and it will very likely be the last one they have with their little girl. It totally put my day in perspective, (more like shook me to my core) and made me realize how incredibly lucky we are.
I left the hospital that night feeling grateful that we "only" have to deal with D and JRA and that no matter how hard it can be to manage from day to day... it can be managed.:cwds: I hope I never forget how lucky we really are.

I don't know if you're a religious person or not, but I call experiences like this "seeing Jesus".

[Ivan's Mum]

I've heald this thought since Van was DX'ed - and when the D gets on top of me I remember the 'clean' ward that they put him in if he needs to go to hospital. It's the brain ward where you are surrounded by kids with brain injuries of every description. Nothing like seeing your child running around there TALKING to realise that I can deal with these cards.

Before they could fit him in the clean ward, he shared a room with a kid that had (I think it was") cystic fibrousis (flem/lung thing) who isn't expected to make it to late 20's. My son has the potential to make it to a very old man. A sobering experience.

[TimO]

I love "frizzy's" reference to "seeing Jesus." I "saw Jesus" when we were in the hospital after Carter's diagnosis with T1. Four days of feeling sorry for myself and thinking life couldn't go on, but I kept seeing a little boy, 7 or 8 years old, who only came out of his room with a mask on, his head bald from chemo, and watched Carter from a distance in the play room longing to play with him. Finally on our last day there I asked the nurse about him. She said he was in the hospital for 28 days, goes home for two days, then comes back for another 28 days. His parents lived an hour away and couldn't afford to quit their jobs so he was all alone during the week. I was so ashamed for feeling sorry for myself. Yes, we have diabetes to live with and it sucks. But we have our children with us. I live to keep my son alive and healthy. There is hope and we will go on. In the meantime, we have insulin, this great group of parents on this forum, and most importantly, our children with us and we're not going to lose them to a terminal illness. May God touch each of you special people during this holiday season.

[Treysmom]

Thank you Emmasmom for putting this into perspective for us. I always think it could be worse . I try to remind myself daily. We are blessed that our child can do anything he wants, when he grows up.

[EmmasMom]

I don't know if you're a religious person or not, but I call experiences like this "seeing Jesus".

That sums it up pretty well. Obviously we've spent more than our fair share of time in children's hospitals in the past 2.5 years, and I've seen hundreds of very sick kids during that time, but this was different. It still makes me cry every time I think about it, it's crazy. To end a truly horrible day feeling thankful for the challenges we've been given, and at complete peace, has to be divine intervention.:cwds:

[Mymommymommy]

It's true. I think as a parent you NEVER want anything to be wrong with your child. And when you hear somebody else say "well, it could be worse.. it could be...??" or "well at least it's manageable" it gets under my skin REALLY BAD. But I think perhaps it gets under my skin because it's coming from somebody who doesn't really know. It's like they are just trying to make me feel better, or make light of it because they don't know what else to say. But there are worse things than D and we do need to remember that. I think more often. It is hard tho at times, when the numbers are crazy, and nothing seems to be making any sense. When your baby cries because you prick their finger, or put a shot in their little leg, in those moments you forget how much worse it could be.

[frizzyrazzy]

That sums it up pretty well. Obviously we've spent more than our fair share of time in children's hospitals in the past 2.5 years, and I've seen hundreds of very sick kids during that time, but this was different. It still makes me cry every time I think about it, it's crazy. To end a truly horrible day feeling thankful for the challenges we've been given, and at complete peace, has to be divine intervention.:cwds:

Blessings come in all different shapes and sizes and they're all around us. Sometimes we just have see them. :cwds:
And you don't know but Emma's sweet face could have been a blessing to someone else that day too.