One of many things I have always admired about my husband is that he is so comfortable with his Type 1 diabetes. Ever since I met him he has checked his blood sugar in public, given himself insulin (the many years he was on multiple daily injections,) and had no problem with people knowing. I don't ever remember him specifically telling people, but taking care of his diabetes was just part of who he was, and he never hid it.
From the start, we have approached Jessica's diabetes the same way. She was seven when she was diagnosed so she really didn't have her own viewpoint on managing diabetes. We checked her blood sugar in public, gave her injections, encouraged her to speak on the topic whether on the radio, or at school.
But, she turns eleven very soon. She will be entering middle school. She is now developing her own T1 identity. And, she has every right to.
And, it turns out, that despite all of our efforts to encourage otherwise (right or wrong,) she does not feel the same way as Sean.
Nor, has she had the same life path as Sean. He was diagnosed at almost 18, when he was much more immune to teasing and bullying, and when it was much less likely to occur.
Jess has had her fair share of nasty comments this year. She has come home upset many days by things classmates have said. Ten year olds aren't the nicest bunch, and I am sure middle school will be worse.
She has ripped out her dexcom site the evening of the spring concert as she didn't want everyone to see it while she was on stage.
She has hidden her pump, and refused to wear a dexcom while swimming for fear people will see.
I caught a small glimpse of a benign version of what she must deal with on a daily basis.
As a special elementary school graduation gift, I took the girls and we got pedicures together. This should have been a time Jess could just relax and enjoy. The woman doing her nails meant no harm at all. But I listened as she said "If you don't mind me asking, what is that on your arm? (Jess's dexcom site.)
Jess does mind. She hates answering these questions. Like any almost 11 year old girl she hates being different.
As I listened to her explain that she had Type 1 and what it is, I realized that even while getting a pedicure she doesn't get a break. She can't even get her nails done without a reminder that she is different. And, as she told me after the pedicure, she hates this. Of course we talked about how it is an opportunity for education and advocacy. But, you know what? The bottom line is that is sucks. How many 10 year olds have to answer questions like that while simply trying to have a moment of relaxation?
Jess started a new day camp this week. She as usual is a super hero. There is no nurse, and she is completely self managing. I am so proud of her.
Last night, she tentatively said "Mom, can I tell you something?" She shared with me that she is going to the bathroom to check her blood sugars.
She realizes this is not what our family has ever done. This is not what her dad does. And, she is questioning whether this is ok. Can she find her own way as a Type 1 individual in our family?
I tell her I am so proud of her for how well she is taking care of herself at camp. I tell her that she needs to do whatever she is comfortable with.
I have not made her wear the dexcom this week. Sean hasn't realized yet that I am giving her this break. I am back to nightly 2 am blood sugar checks. But, it is one way I can help her define who she is. She doesn't want the dexcom this week. She doesn't want one more gadget that makes her different. And, I think that is ok. My hope is that by a give and take she will be more accepting and adjusted in the long run.
I need to talk to Sean. He is such an amazing dad. But, he is so secure in his own Type 1, and he was never an almost 11 year old girl. We need to allow her to develop her own Type 1 identity.
There is no instruction book on how to parent kids with Type 1. We had hoped that we were raising Jess in a way that she would see diabetes as Sean does...his greatest strength.
And, maybe we are.
But, life is a journey. Jess needs safety, acceptance, and love to explore and figure out who she will be. Will she always test in the bathroom and try to hide any outside evidence that she is different, or will she someday be more like Sean?
We need to reassure her that either way is ok. We love her no matter what.
As, I wrote on her note in her lunchbox today, she is my super hero. And, if she needs to hide that fact that she is a super hero like Clark Kent did, then that is ok with me.
Tuesday, June 18, 2013
Thursday, May 2, 2013
A Family Disease
Jess couldn't visit Courtney in the ICU, but as soon as we got to the regular pediatric floor, a caring nurse arranged for us to take Courtney off the floor to the lobby so they could be reunited. It was cold and flu season and nobody under 16 was allowed on the floor. Until then they FaceTimed and those conversations were priceless.
Courtney was asked to fill out a sheet so the nurses could get to know her. The kid had just had brain and spine surgery. Under "What makes you scared?" she didn't list her surgery or the recovery that was still ahead. Her response was "Jessica's blood sugars."
Anyone who thinks that only the person with type 1 is the patient is not correct. Type 1 diabetes is definitely a family disease.
Tuesday, April 30, 2013
Changed
I am changed. Not that this is a huge revelation. We are all changing every day. But, this was a big change.
I had gotten used to being the mom of a type 1 child. I don't like it. But, we have found a new normal. We have found a home in Children With Diabetes. It is still a constant, daily, exhausting struggle. But it is a struggle that is now normal.
Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through. And, that includes medical school, residency, and some pretty tough situations.
With all of those other situations, including Jess getting diagnosed I felt I was in control. It may not have been an accurate perception all of the time, but it was at least a nice delusion. There was no way I could delude myself that I was in control of any part of Courtney's situation. And, things just seemed to spiral out of control. The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident... It was just one of those weeks where absolutely everything felt like it was spinning out of control.
Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life. Not knowing how things would go. Not knowing what she would be like. Was the Courtney I know going to be the Courtney after this surgery? I've unfortunately seen way too many complications and bad outcomes. They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery. In my mind I had gone to worst case scenarios. She bleeds to death. She's paralyzed. She suffers brain damage. Sure, I could tell myself that these were very unlikely. We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over. But, I could not stop the thoughts from coming in the middle of the night. For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad. Friends and family carried me through.
Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced. Weeks of constant chest pressure evaporated. She was awake. Smiling. Talking. She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.
The hospitalization was surreal. The night in the intensive care unit was the hardest. I was in a fog where every two hours Courtney was examined and poked. At one point they told me they were ruling out diabetes insipidus. Diabetes. The word that haunts us whenever we think of Courtney...the child not yet affected. Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.
Sometime the next day we were moved to a regular pediatric floor. I continued in a surreal state. Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium. Sleepless nights with frequent vital signs and neurologic checks. And yet, it also felt like a break. Even as I write that I realize how pitiful that sounds. I had one job in the hospital: to be Courtney's mom. I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework. I just had to be Courtney's mom. And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing. It was a simple, surreal existence. I remember thinking so many times that I could breathe again. That constant chest pressure was gone. I could finally see beyond the surgery. Courtney was going to be okay.
As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults. Never did Courtney panic. I never saw her cry in pain. She would simply push the button for more narcotics. She handled things better than I did, and better than I would have by far had I been the one having the surgery. Children simply amaze me.
And, now we are home. She is still recovering, not yet back at school. It will be awhile before she can run and play again. Things must heal. But, her Chiari is cured.
I wonder how this makes Jessica feel. I know I have thought about it. As absolutely acutely horrific as this entire experience was, Courtney is cured. Jess continues her battle, her cure still elusive and unsure.
Our daily life with diabetes in back. Relentless, exhausting, but yet our normal.
And, I am thankful. I missed normal. I missed my delusion of control.
I look at Courtney and Jess differently. As with all parents, I always imagine I could not love them more. And, yet especially after this it has exponentially grown.
And, I am changed. My perspective has changed. I have learned twice now not to take my children's health for granted. I hug them tighter. I listen closer. I am thankful for this forced time with them, without the distractions of a stressful job.
Both my children carry visible reminders that they are warriors. Jess with her calloused fingers, and pump. Courtney with her incision that will become a scar.
They, too, are changed.
I had gotten used to being the mom of a type 1 child. I don't like it. But, we have found a new normal. We have found a home in Children With Diabetes. It is still a constant, daily, exhausting struggle. But it is a struggle that is now normal.
Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through. And, that includes medical school, residency, and some pretty tough situations.
With all of those other situations, including Jess getting diagnosed I felt I was in control. It may not have been an accurate perception all of the time, but it was at least a nice delusion. There was no way I could delude myself that I was in control of any part of Courtney's situation. And, things just seemed to spiral out of control. The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident... It was just one of those weeks where absolutely everything felt like it was spinning out of control.
Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life. Not knowing how things would go. Not knowing what she would be like. Was the Courtney I know going to be the Courtney after this surgery? I've unfortunately seen way too many complications and bad outcomes. They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery. In my mind I had gone to worst case scenarios. She bleeds to death. She's paralyzed. She suffers brain damage. Sure, I could tell myself that these were very unlikely. We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over. But, I could not stop the thoughts from coming in the middle of the night. For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad. Friends and family carried me through.
Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced. Weeks of constant chest pressure evaporated. She was awake. Smiling. Talking. She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.
The hospitalization was surreal. The night in the intensive care unit was the hardest. I was in a fog where every two hours Courtney was examined and poked. At one point they told me they were ruling out diabetes insipidus. Diabetes. The word that haunts us whenever we think of Courtney...the child not yet affected. Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.
Sometime the next day we were moved to a regular pediatric floor. I continued in a surreal state. Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium. Sleepless nights with frequent vital signs and neurologic checks. And yet, it also felt like a break. Even as I write that I realize how pitiful that sounds. I had one job in the hospital: to be Courtney's mom. I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework. I just had to be Courtney's mom. And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing. It was a simple, surreal existence. I remember thinking so many times that I could breathe again. That constant chest pressure was gone. I could finally see beyond the surgery. Courtney was going to be okay.
As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults. Never did Courtney panic. I never saw her cry in pain. She would simply push the button for more narcotics. She handled things better than I did, and better than I would have by far had I been the one having the surgery. Children simply amaze me.
And, now we are home. She is still recovering, not yet back at school. It will be awhile before she can run and play again. Things must heal. But, her Chiari is cured.
I wonder how this makes Jessica feel. I know I have thought about it. As absolutely acutely horrific as this entire experience was, Courtney is cured. Jess continues her battle, her cure still elusive and unsure.
Our daily life with diabetes in back. Relentless, exhausting, but yet our normal.
And, I am thankful. I missed normal. I missed my delusion of control.
I look at Courtney and Jess differently. As with all parents, I always imagine I could not love them more. And, yet especially after this it has exponentially grown.
And, I am changed. My perspective has changed. I have learned twice now not to take my children's health for granted. I hug them tighter. I listen closer. I am thankful for this forced time with them, without the distractions of a stressful job.
Both my children carry visible reminders that they are warriors. Jess with her calloused fingers, and pump. Courtney with her incision that will become a scar.
They, too, are changed.
Monday, April 8, 2013
The Gray Zone
So, here's the thing about Type 1 diabetes. It may be a 24/7 emotionally hard, exhausting, unrelenting disease filled with painful site and dexcom changes, but to my scientific brain it is clear what to do. We have a big study that demonstrated the lower the HgbA1c, the less likely certain complications are. That's not to say that the body always follows those rules. Certainly many people invest all their energies towards good blood sugar control and still end up with unfair complications. But, I don't know that many would argue that blood sugar control is important and will likely lead to improved health.
So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.
This thing with Courtney is all about the gray zone. And, I am so NOT ok with that. I like data and proof and evidence. And, there is none. Two surgeons THINK she needs the surgery, but they don't have any data to back that up. Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse. But, they don't KNOW.
Now her blood tests show her blood is just a bit too thin. It COULD be nothing. But, once again we just don't know. It COULD also be a genetic condition that might increase her risk of bleeding. And, even if it is a genetic condition and we identify it, it is unclear how to treat it. We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing. And, we just don't know.
If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about. But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)
So, here we are in the gray zone. At the end of the day, I just have to try to have faith that things will work out. But, the problem is that so far my children seem to not do well with the statistic game. And, I've seen far to many bad things happen in my career.
So, I am struggling. I don't like living in the gray zone.
But, I don't have a choice.
So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.
This thing with Courtney is all about the gray zone. And, I am so NOT ok with that. I like data and proof and evidence. And, there is none. Two surgeons THINK she needs the surgery, but they don't have any data to back that up. Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse. But, they don't KNOW.
Now her blood tests show her blood is just a bit too thin. It COULD be nothing. But, once again we just don't know. It COULD also be a genetic condition that might increase her risk of bleeding. And, even if it is a genetic condition and we identify it, it is unclear how to treat it. We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing. And, we just don't know.
If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about. But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)
So, here we are in the gray zone. At the end of the day, I just have to try to have faith that things will work out. But, the problem is that so far my children seem to not do well with the statistic game. And, I've seen far to many bad things happen in my career.
So, I am struggling. I don't like living in the gray zone.
But, I don't have a choice.
Sunday, March 31, 2013
The Universe Does Not Care
Spoiler....this is not a happy, uplifting, optimistic post. Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.
I know I am lucky in so many ways. I have the most wonderful husband, daughters, parents, and friends I could imagine.
And, I need to remember that because I have not felt very fortunate lately. I know there are many, many people less fortunate and I am so thankful for what I do have.
But, lately life events have been a reminder that there is no "pass on the bad luck card." We already have two family members with chronic diseases. Isn't a husband and daughter with Type 1 enough? It already takes so much of our time, energy, emotional health. So many families (and I am truly happy for them) seem to have healthy children. So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?
The universe does not care.
Courtney is supposed to be my healthy daughter. The one I don't have to worry about every second of my life.
Life does not work this way. I know it from my patients. And, I know it from other families.
But, it is still devastating.
Courtney was likely born with an abnormality in which part of her brain is too big for her skull. It is pushing down on her spinal cord and blocking the flow of her spinal fluid. It is creating a cavity in her spine, which if left could result in paralysis some day. It is creating scoliosis for which she has been such a trooper wearing a brace.
She needs brain and spine surgery. They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.) They assure me she doesn't need these things. But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery. But, we have seen two surgeons and they both recommend the surgery. According to one of them "the complications are rare but devastating." She is totally, completely healthy and with no symptoms right now except for her scoliosis. It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay. She will be in pain and scared. And, she is supposed to be my healthy child.
Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out? Why can't we have the normal scrapes and bruises of childhood?
Why, why, why do both my children now have a BIG, serious, SCARY health condition????
The universe does not care.
And, this may not be it either. There is no pass on the bad luck card. There may be even bigger and scarier things ahead. And, that is a terrifying thing to realize. Having two children with these terrifying, horrible things does not guarantee they will not get something else.
So many feelings from Jessica's diagnosis reemerge. Will I be able to do this? Will I be what she needs? How will this affect her? The anguish, the fear, the defeat. God, can I do this again?
And, a whole different layer. Who will care for Jess? Where is the best place for her? She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions. How will this effect her? And, for the first time since her diagnosis the focus on health is not on her. She clearly has felt the shift. Unintentionally, she is clearly trying to adapt to this.
I wish I could just say "pass." Sorry, we already have our hands full dealing with two of our family members having Type 1. Nope- we can't do this too. But, the universe does not care.
Luckily family and friends do. As we took awhile to learn with diabetes, it takes a village. We could not handle diabetes well without our Children With Diabetes family. I don't think we could make it through this without our friends and family. We are not fun to be around. We are an unpleasant reminder that bad things can happen to everyone's children. And, there is no limit to these bad things. Yet, a handful of friends has come forth and stood by us. While we have been disappointed in some, we have been amazed by others. Our parents have been a steady source of support.
And, so I am reminded of the powerful words "I can do this." Once again, I can do this because I have to. I don't have a choice. My family doesn't have a choice.
So, we will do this.
I know I am lucky in so many ways. I have the most wonderful husband, daughters, parents, and friends I could imagine.
And, I need to remember that because I have not felt very fortunate lately. I know there are many, many people less fortunate and I am so thankful for what I do have.
But, lately life events have been a reminder that there is no "pass on the bad luck card." We already have two family members with chronic diseases. Isn't a husband and daughter with Type 1 enough? It already takes so much of our time, energy, emotional health. So many families (and I am truly happy for them) seem to have healthy children. So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?
The universe does not care.
Courtney is supposed to be my healthy daughter. The one I don't have to worry about every second of my life.
Life does not work this way. I know it from my patients. And, I know it from other families.
But, it is still devastating.
Courtney was likely born with an abnormality in which part of her brain is too big for her skull. It is pushing down on her spinal cord and blocking the flow of her spinal fluid. It is creating a cavity in her spine, which if left could result in paralysis some day. It is creating scoliosis for which she has been such a trooper wearing a brace.
She needs brain and spine surgery. They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.) They assure me she doesn't need these things. But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery. But, we have seen two surgeons and they both recommend the surgery. According to one of them "the complications are rare but devastating." She is totally, completely healthy and with no symptoms right now except for her scoliosis. It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay. She will be in pain and scared. And, she is supposed to be my healthy child.
Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out? Why can't we have the normal scrapes and bruises of childhood?
Why, why, why do both my children now have a BIG, serious, SCARY health condition????
The universe does not care.
And, this may not be it either. There is no pass on the bad luck card. There may be even bigger and scarier things ahead. And, that is a terrifying thing to realize. Having two children with these terrifying, horrible things does not guarantee they will not get something else.
So many feelings from Jessica's diagnosis reemerge. Will I be able to do this? Will I be what she needs? How will this affect her? The anguish, the fear, the defeat. God, can I do this again?
And, a whole different layer. Who will care for Jess? Where is the best place for her? She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions. How will this effect her? And, for the first time since her diagnosis the focus on health is not on her. She clearly has felt the shift. Unintentionally, she is clearly trying to adapt to this.
I wish I could just say "pass." Sorry, we already have our hands full dealing with two of our family members having Type 1. Nope- we can't do this too. But, the universe does not care.
Luckily family and friends do. As we took awhile to learn with diabetes, it takes a village. We could not handle diabetes well without our Children With Diabetes family. I don't think we could make it through this without our friends and family. We are not fun to be around. We are an unpleasant reminder that bad things can happen to everyone's children. And, there is no limit to these bad things. Yet, a handful of friends has come forth and stood by us. While we have been disappointed in some, we have been amazed by others. Our parents have been a steady source of support.
And, so I am reminded of the powerful words "I can do this." Once again, I can do this because I have to. I don't have a choice. My family doesn't have a choice.
So, we will do this.
Tuesday, February 12, 2013
Spare a rose, Save a child
When Jessica was diagnosed with Type 1 diabetes at age 7 my world shattered. But, because we live in the USA she is now thriving and healthy. Other parents are not so lucky. In other parts of the world, little girls just like Jessica do not go on to become healthy, happy 10 year olds. They die. And, this is not ok. Luckily, there are organizations that are trying to help. This Valentine's Day support Life For A Child. Spare a rose and save a child.
Just $1 a day provides a child with:
- regular insulin
- quality blood glucose monitoring equipment (meter, strips, lancets)
- essential clinical care
- up-to-date diabetes education materials
- specialised diabetes training for medical staff
“The scope of what needs to be done is vast. Diabetes management is complex. While the first step is getting access to insulin, it needs to be followed up with education on managing diabetes, extending sustained care and also improving the quality of care. This takes both time and ongoing resources, so donations such as yours are crucial to the success and longevity of the Life for a Child Programme. Thank you for your contribution.”
Dr Graham Ogle, LFAC General Manager.
Join myself and other bloggers from the Type 1 diabetes world in getting the word out. This Valentine's Day be a hero. Spare just one rose, and instead donate a dollar to save a child.Thank you.
http://bit.ly/SpareRoseSaveChild
http://diabetesadvocates.org/c/spare-a-rose-save-a-child/
Thursday, February 7, 2013
It Takes A Village
I don't know how patients do it alone. I truly think I had Caregiver Burnout last month. And, I think Jessica had Diabetes Burnout. We were both just so sick of every check, and dealing with every high and low. Math tests that had to be taken during recess due to high blood sugars. Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on. I was feeling unusually down, and I think Jess was too.
And then something wonderful happened. It was time for the Children With Diabetes Focus on Technology conference. Home. Friends. No explanations necessary. No food scale necessary. Inspirational people. And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.
I came back from the weekend refreshed, full of new energy and ideas. And, Jessica came back happier and less angry. It truly takes a village.
And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes. I can't believe the wonderful people I have met because of diabetes. Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed. I have watched my T1 hubby become hopeful again, happier, less alone. I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed. But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes. We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more. They are inspirational. They provide support to our whole family. They give me perspective. They lighten my load. They share a kinship with my T1 hubby.
So many "wow" moments, so many inspirational moments. Below are just a few of the tweets from the conference:
"Avoid miscarried helping."
"No one is truly independent. The hallmark of being an adult is knowing when you need help and asking for it."
"Great response to teenagers: how'd that work for you?"
"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."
"Ask your child how they would like you to ask them what their blood sugar is."
"Give your child the gift of struggle."
"Fair is something you buy tickets to. The rest is called life."
"Preschoolers may think they did something to cause diabetes."
"My daughter is not a mouse. If she was she would have been cured 300 times by now."
"Pre-bolus and check one more time a day."
"The person with diabetes who knows the most lives the longest."
"We need to change to a prevention minded society."
"You can set the bar, but it's important to know that bar moves."
"It's ok if diabetes slows you down, but don't let it stop you."
And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes. Greatness always come in the face of obstacles."
This is a ridiculously hard walk, but you don't have to walk it alone. It takes a village to raise a Type 1 child. And, it takes a village to be an adult with Type 1. Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.
Subscribe to:
Posts (Atom)