If I recall today one year ago, we got up at the crisp crack of dawn, one day out from the start of winter so we could get back to the hospital.
My heart was literally breaking like the dawn I so dreaded and craved as the black of night slipped away and the first day of the rest of our lives began.
I had taken Reubens little pajamas which smelled vividly of ketones and placed them on my pillow, while I sent out panicked prayers as I drifted in and out of sleep back home. Meanwhile he had spent the night in the paediatric intensive care unit attached to tubes and drips and monitors. He was assigned a nurse who sat by his bedside the entire night, monitoring his vitals, my tiny sick baby. We werent allowed back inside immediately because they had to re-do his IV. Eek. The place was harder to get into than Alcatraz was to get out of - with locking doors, cameras, security speakers and pin codes. Between my baby and I were huge white walls, stark swinging doors and nurses more stern than burly bouncers at a pub brawl.
When I saw him that morning if my heart wasnt broken thoroughly already, it surely broke now.
He was limp and thin. And entirely exhausted.
This illness is autoimmune, these unruly cells that were supposed to attack foreign bodies and help him out, failed him. Instead, getting a penchant for fighting friends, turned on his good cells and his ability to make his own insulin to process his sugars, now a thing of the past :( Like a crappy flatmate, packing its bags without notice, leaving you in an empty house, to clean up, to foot the expenses and face the landlord alone.
The Endos and Diabetes Eds came in crowding around his bed. I had no idea if I would ever see these people again, but they were all interested in me telling our story over and over. The virus, the gastro, the weightloss, the sleepless nights and the funny 'smell'. They asked questions as they peered at my baby laying lifelessly on the bed, things like time frames - how long had he been sick? Did I give breast milk or formula?
I felt guilty truly I did, initially I felt like I had harmed my baby because of their rapid fire questions.
Theres real healing in talking about those days. The salve of being heard. Of being understood. A friend who 'gets it' saying, yup I know it truly sucks. Thankyou DOC.
Thankyou that you validate me and say to me, yup this is hard. Diabetes SUCKS!
Or Diabetes is a big fat turd. (Thankyou Reyna and Joe from Beta Buddies).
Or hearing Sugar coat all you like. When I prick my kids finger, I see blood. Not F-ckin glitter. (Thankyou Alexis from Justice's Misbehaving Pancreas).
Theres some awesomeness in the DOC. I love when I read things like-
Denise's Ubergeek (From My sweet bean and her pod) can communicate in a 'your pancreas skills suck at the moment' kind of tone.
And in Sarahs world (The Ethan and Isaac Show) she also has to say obvious things to a Dr. like my youngest was diagnosed with type 1 diabetes at 19 months and it's a little more complicated than just finding a babysitter.
Or when Alans (From Two Organs Short) at work and gets those calls- Everyone I work with is used to the calls: "he's high", "he's low", "he's pulled his site out", "another kid pulled his site out".
From over at Diapeepee's - Roseladys dia-poetic abilities made me laugh out loud - I can count carbs in a box. I can count them in my socks. I can count them here or there. I can count them anywhere.
And truth is definately stranger than fiction over at D-Tales. Heidi discusses Dexcom going swimming and sitting in rice, all with accompanying pics.
Im not alone!! I cannot say it any better than when Melissa (From My Corner) said I sit nodding in agreement, crying in the pain shared and strangely comforted by others need to vent.
Thanks everyone, theres literally too many to mention in one day but you guys rock!! I do nod, laugh, cry and feel comforted and like a part of something bigger than myself and Reubens Diabetes.
Speaking of rocks, check out this awesome post by Wendy of Candy Hearts.
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Freaking blogger acting up, I had to put the links in all dodgy sorry, it just wouldnt take them any other way and I really had to link to your fabulous blogs xx.
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Tuesday, May 31, 2011
Monday, May 30, 2011
365 days of diabetes
Today is 1 year.
1 year of living with type 1 diabetes.
Today is 1 year of learning about type 1 diabetes.
Today is Reubens first full year of being a type 1 Diabetic.
It has passed in a flash. A heart beat ago, he was diagnosed. The Dr looked me in the eye over the hospital bed in the ER and said, 'Theres something you have to know, your son has Diabetes'....
My mind was truly blank. I didnt know what that meant. Shock and ... well ... ignorance.
A nurse came by and gave me a pad and pen. She said write down any questions you have. The paper stayed blank. Instead I asked them for a 'manual'. Like taking home a new appliance you dont know how to operate. How could I no longer know how to look after my own son? But thats how I learn best. A highlighter pen. Post it notes. Scribbles in the margin.
While whisking him up to Intensive Care I recall thinking this is bad. But a blurry bad. I saw him so sick from high blood sugars that I never want to see him there again. I saw how he became himself smiling and happy within a week. DKA a memory. The contented baby he was, once he got insulin and rehydrated.
I had to accept it. The insulin was what he needed.
Like I said we are learning. As he grows it all changes. Almost weekly. What we thought we knew about his management has been superseded. Again and again. When we know better - we do better.
Bringing my newly diagnosed baby home with a bag of needles, insulins, a log book and blood glucose meter was one of the most daunting experiences of my life. I remember the hurdles.
At the Diabetes shop, asking for the shopping list of supplies for my newly diagnosed son, eyes stinging with holding back tears. I have to have a what? A sharps container?
And again when the optium exceed errored and I would have to re-prick and re-squeeze to get more blood. I hated do-overs. I remember the squirming baby that would try and avoid the needles in his soft bottom. The awful days when he squirmed so much you could see droplets of insulin all over his bottom and you just KNEW it was going to be a bad day because he didnt get the full dose. The flailing infant with low blood sugar who refused to take any sugar. I remember the unsure parent who over treated hypos from fear. Who rang the endo to see if we should check for ketones. Who couldnt recall if it was clear or cloudy insulin to be drawn into the syringe first. Who didnt know the difference between the carbs.
Weve come a long way. Theres been a huge amount to learn. Theres still heaps more to learn.
There wasnt any choice but we have to embrace this new life.
And on into the second year. Acknowlege the first was hard...yes. But we've had alot of fun. Reubens a great kid with awesome siblings.
These photos were a few months back, Aunty Bernie arranged to take us to an indoor Old McDonalds Farm. Of course the kids loved it.
Yes my eyes are shut. They always are in pics. Sorry.
Diabetes doesnt stop you trying to ride a goat!!
All 3 of my lovely kids.
Thats it, Reuben, gentle!
Reubs and sheepy action shot.
Happy diaversary my tough little man.
You are calm and peaceful.
1 year of living with type 1 diabetes.
Today is 1 year of learning about type 1 diabetes.
Today is Reubens first full year of being a type 1 Diabetic.
It has passed in a flash. A heart beat ago, he was diagnosed. The Dr looked me in the eye over the hospital bed in the ER and said, 'Theres something you have to know, your son has Diabetes'....
My mind was truly blank. I didnt know what that meant. Shock and ... well ... ignorance.
A nurse came by and gave me a pad and pen. She said write down any questions you have. The paper stayed blank. Instead I asked them for a 'manual'. Like taking home a new appliance you dont know how to operate. How could I no longer know how to look after my own son? But thats how I learn best. A highlighter pen. Post it notes. Scribbles in the margin.
While whisking him up to Intensive Care I recall thinking this is bad. But a blurry bad. I saw him so sick from high blood sugars that I never want to see him there again. I saw how he became himself smiling and happy within a week. DKA a memory. The contented baby he was, once he got insulin and rehydrated.
I had to accept it. The insulin was what he needed.
Like I said we are learning. As he grows it all changes. Almost weekly. What we thought we knew about his management has been superseded. Again and again. When we know better - we do better.
Bringing my newly diagnosed baby home with a bag of needles, insulins, a log book and blood glucose meter was one of the most daunting experiences of my life. I remember the hurdles.
At the Diabetes shop, asking for the shopping list of supplies for my newly diagnosed son, eyes stinging with holding back tears. I have to have a what? A sharps container?
And again when the optium exceed errored and I would have to re-prick and re-squeeze to get more blood. I hated do-overs. I remember the squirming baby that would try and avoid the needles in his soft bottom. The awful days when he squirmed so much you could see droplets of insulin all over his bottom and you just KNEW it was going to be a bad day because he didnt get the full dose. The flailing infant with low blood sugar who refused to take any sugar. I remember the unsure parent who over treated hypos from fear. Who rang the endo to see if we should check for ketones. Who couldnt recall if it was clear or cloudy insulin to be drawn into the syringe first. Who didnt know the difference between the carbs.
Weve come a long way. Theres been a huge amount to learn. Theres still heaps more to learn.
There wasnt any choice but we have to embrace this new life.
And on into the second year. Acknowlege the first was hard...yes. But we've had alot of fun. Reubens a great kid with awesome siblings.
These photos were a few months back, Aunty Bernie arranged to take us to an indoor Old McDonalds Farm. Of course the kids loved it.
Another poor goat avoiding a tackle.
My daughter who I think will work with animals one day.
Happy diaversary my tough little man.
You are calm and peaceful.You are strong and resilient - you endure without fight.
You are fun and have a great sense of humour.
You did nothing to deserve this disease and had no choice.
But Im grateful you are such a wonderful patient child.
Wise beyond your years and just a great little person.
Of whom I am terribly proud and protective.
You are teaching us much about family, love and perserverence.
We will manage this fight together until there is a cure.
Love you very much, munchkin xx.
Saturday, May 28, 2011
When blogger acts up
What do you do when blogger is being temperamental.
Really.
Theres blogs to read. Theres comments to post. Theres ideas to post. Theres stats to look at that are, frankly awesome to take a gander at.
My life doesnt change knowing that someone from Slovakia viewed my blog today, but maybe reading my blog changed the life of that person, or their child with diabetes...
What hits me is, that Im trading in some of my privacy, for the sake of the DOC. When the enormity of the World Wide Web hits you, its like...whoooaaaa. Theres a community of people who log in, all over the world, the UK, Australia, USA, Canada, New Zealand. We are craving company and a sense of 'sameness and 'uh huh' and 'i understand' 'i know what you mean'.
The most frequently viewed page on my blog is actually Reubens diagnosis story. I get a quick snapshot of the things people typed in to 'find' my blog on google. Amongst those things are questions like,
"Can babies get diabetes?"
"Symptoms of diabetes"
"Babies with type 1?"
"Cure for type 1"
"My baby is weeing alot"
I mean, perhaps what I write may not make a lifelong friendship in some cases, but could be helpful. To someone. Somewhere. So despite sometimes thinking, who could possibly want to read about our life with diabetes? Im going to keep on !
2 more days until Reubens 1 year anniversary with diabetes. A friend asked me how we were doing. My answer surprised me.
Really.
Theres blogs to read. Theres comments to post. Theres ideas to post. Theres stats to look at that are, frankly awesome to take a gander at.
My life doesnt change knowing that someone from Slovakia viewed my blog today, but maybe reading my blog changed the life of that person, or their child with diabetes...
What hits me is, that Im trading in some of my privacy, for the sake of the DOC. When the enormity of the World Wide Web hits you, its like...whoooaaaa. Theres a community of people who log in, all over the world, the UK, Australia, USA, Canada, New Zealand. We are craving company and a sense of 'sameness and 'uh huh' and 'i understand' 'i know what you mean'.
The most frequently viewed page on my blog is actually Reubens diagnosis story. I get a quick snapshot of the things people typed in to 'find' my blog on google. Amongst those things are questions like,
"Can babies get diabetes?"
"Symptoms of diabetes"
"Babies with type 1?"
"Cure for type 1"
"My baby is weeing alot"
I mean, perhaps what I write may not make a lifelong friendship in some cases, but could be helpful. To someone. Somewhere. So despite sometimes thinking, who could possibly want to read about our life with diabetes? Im going to keep on !
2 more days until Reubens 1 year anniversary with diabetes. A friend asked me how we were doing. My answer surprised me. "Reuben is doing wonderfully. We're learning heaps. We've accepted its (diabetes) is not going away."
Yep. He is. Yep we are. And yep again. Its a trifecta, it sure aint going away. This is our new life.
Bring on the artificial pancreas!!
Friday, May 27, 2011
The week that was
The only way I can describe this week is OH MY GOD.
A Chest x-ray, funeral, endo appointment, ambulance. I have had more than enough excitement and would love some quiet time over the weekend.
Let me clarify, the chest xray was for me for a cough that hasnt resolved in 3 months. I got the all clear on the lungs and heart, no idea whats up, just a lingering cough after a flu I guess. The funeral was for my husbands Aunty who passed away tragically too young. I couldnt attend because someone had to watch the children. (thats me, kid watcher extraordinaire). The endo appointment (see previous post) went well.
Now Ive cleared those up...the ambulance.
So I went to the dr to ask for some antidepressant and anxiety medication. I walk out with Citalopram. (Celexa). Dosage was 20mg once a day. What follows is a comedy of errors, though I laughed very little during. The first 24 hours I yawn non stop - to the point where I follow my feet to the bedroom and lay zonked out for a few hours. Im so nauseous and sick, I feel pregnant! A much needed rest, yes, bad for caring for a diabetic child! Luckily Danger Dad was home that day.
The following day I begin developing whats probably the first real migraine headache Ive had in my life! I get aches, pains, fever. Then as the night wears on I have complete insomnia. Restless legs. Pins and needles then burning and itching skin!! Hot and cold races up and down my nerves in my neck and head. OMG. I thought I was going to die when I got dizzy, racing heart, throat got totally dried and began closing up. THEN... full blown panic attack..
Apparently this is all normal going onto the drug and coming off it. Let me just say, that I dont feel ready to try again! Ive stopped the tablets as that drug reaction was almost worse than child birth.
Reuben is doing well. He starting saying 'outside'...which is his favourite place in the world. I will take his lead and go get sunshine and fresh air today also.
Ive not been able to comment on your blogs, something up with blogger?
A Chest x-ray, funeral, endo appointment, ambulance. I have had more than enough excitement and would love some quiet time over the weekend.
Let me clarify, the chest xray was for me for a cough that hasnt resolved in 3 months. I got the all clear on the lungs and heart, no idea whats up, just a lingering cough after a flu I guess. The funeral was for my husbands Aunty who passed away tragically too young. I couldnt attend because someone had to watch the children. (thats me, kid watcher extraordinaire). The endo appointment (see previous post) went well.
Now Ive cleared those up...the ambulance.
So I went to the dr to ask for some antidepressant and anxiety medication. I walk out with Citalopram. (Celexa). Dosage was 20mg once a day. What follows is a comedy of errors, though I laughed very little during. The first 24 hours I yawn non stop - to the point where I follow my feet to the bedroom and lay zonked out for a few hours. Im so nauseous and sick, I feel pregnant! A much needed rest, yes, bad for caring for a diabetic child! Luckily Danger Dad was home that day.
The following day I begin developing whats probably the first real migraine headache Ive had in my life! I get aches, pains, fever. Then as the night wears on I have complete insomnia. Restless legs. Pins and needles then burning and itching skin!! Hot and cold races up and down my nerves in my neck and head. OMG. I thought I was going to die when I got dizzy, racing heart, throat got totally dried and began closing up. THEN... full blown panic attack..
Apparently this is all normal going onto the drug and coming off it. Let me just say, that I dont feel ready to try again! Ive stopped the tablets as that drug reaction was almost worse than child birth.
Reuben is doing well. He starting saying 'outside'...which is his favourite place in the world. I will take his lead and go get sunshine and fresh air today also.
Ive not been able to comment on your blogs, something up with blogger?
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