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What is the most touching thing someone has done for you since dx?

Discussion in 'Parents Off Topic' started by Seansmommy, Aug 1, 2009.

  1. bibrahim

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    DD was diagnosed the day after Christmas. We were out of town visiting family. I called my family back home and the next AM my parents and sister's family made a day trip to see her in the hospital. They brought us things we were missing such as socks and clean underware (husband packs poorly) and then the took our house keys in case we needed anything. When we got home a few days later they had compiled a cleaning crew and completely cleaned my house. I had left in a post Christmas mad rush so it was pretty messy but they cleaned from top to bottom. My Aunt brought in gifts and she bought a novel that ended up being inappropriate for my daughter...kinda funny from my Aunt...and she also bought her a cookbook for diabetics which she loved. Other friends brought lots of gifts which lifted her spirits. My sister in law gave DD a manicure at the hospital. That one makes me cry. Her hands looked so beautiful afterwards and we had to poke and poke them...my DD with ADHD made me laugh...she is so strong and I needed her strength. Somehow I had the quilt my Grandmother made...it comforted me when I went for rest breaks in the parent bed in the PICU
     
  2. StillMamamia

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    Well, this is actually about school. My son started 1st grade back in September. We were very nervous (bigger school, new teachers, way more kids up to 6th grade).

    We gave his 2 main teachers a bunch of folders with info on T1 D, ranging from basic what ifs to symptoms, etc. Then a few weeks later we gave them the invitation from the hospital for them to attend a 2hr info session. Around 10 teachers, including the school janitor, attended this session. I cried. I was so overwhelmed with happiness and feeling so blessed that so many at the school wanted to be informed and wanted to make sure they knew what to do so my son could be safe. I don't know exactly who went, but I thanked his 2 teachers and the janitor for going and they all said the same thing "It's normal.":cwds: Gives a whole new dimension to "It takes a village to raise a child."

    So that's my feel good story for ya.;)
     
  3. Barbzzz

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    After Alex was dx, I had blogged about our experience in the local hospital (conditions were somewhat primitive, as you might imagine). A young Ghanaian woman who is also T1 (and living in Vancouver, BC) read my blog post and put together a care package that she sent to Alexandra -- two meters, a bunch of glucose strips, glucose tabs, and the JDRF Ruby bear.

    Adjoa was merely the first of the many heroes and friends who stepped forward to help Alexandra and other T1 children here.

    Our blessings are many. :cwds:
     
  4. obtainedmist

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    When we met the endo at the hospital for the first time, the first thing he said to us (and Molly in particular) was, "Nothing you did or didn't do caused this to happen." I know this isn't a warm and fuzzy gesture, but it meant the world to us. I still think about his comment when things are rough.
     
  5. MissMadisonsMom

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    Our most touching experience still brings tears to my eyes. Madison was still in ICU and I had come home to take a shower and change clothes and I noticed a card on the front porch. I opened it and it was a gift card for my son (non-D) and a nice note to all of us that said something like 1 child being sick effects the whole family. While this would be a nice gesture on it's own it was especially touching because the family who sent it was, at the time, up at our other Children's hospital because their son (same age as Madison) was suffering from a rare form of Sarcoma. That they took the time away from their stress, pain and hurt to send us a note was incredible...they truly did get that D, or any illness, effects the whole family.
     
  6. DsMom

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    Just yesterday, some funky thing happened with Daniel's pump. He was 181 before gym at the end of the day. Toward the end of gym, his pump alarmed so he went back to the nurse. It said he had 0 UNITS!! He had had 10 units at lunchtime!! He was now 275. It alarmed again when she was on the phone with me with a "No delivery-pump not primed" message. It was the very end of the day, so I told her just to put him on the bus. While I waited, I got everything I could ready for his site change. Anyway, I don't really know WHAT happened, but I changed his site, and he was 121 at dinner. After dinner, the phone rang. It was our sweet school nurse, calling on her own time to check on Daniel!

    Another sweet thing...Last year at kindergarten graduation, one of the moms was preparing goody bags for all of the "graduates." The mom stopped me at school pickup one day and said her son wanted to make sure she talked to me about what could go in Daniel's bag because he knew he had diabetes but wanted to be sure he had some nice goodies, too.
     
  7. grantsmom

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    My son spent the night at a new friends house. The mom asked me if I would like her to wake up a few times during the night to test him. Still brings tears to my eyes....
     
  8. DsMom

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    Just thought of another...probably the most touching but simplest thing from Daniel himself...

    Daniel just recently put his arms around me and gave me a big kiss and said "You're the best mommy in the world. Thank you for taking such good care of me." !!!!!!! I poke him in the fingers, poke him in the butt for site changes, say "no you can't eat that" way too much to him, and have held him down while he screams while nurses insert IVs or take blood. And he STILL thinks I take good care of him. Makes me cry even now.
     
  9. Christopher

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    Not to derail the thread, but out of curiosity, why do you restrict his food choices?
     
  10. BKKT10

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    When we were in the ICU with Kay my BIL gave us a check from the union that he is a member of- they heard what happened to us and wanted to contribute towards our medical expenses/hospital stay. I couldn't believe what a nice gesture this was!

    Also, we went to the hospital the day of Kay's first birthday party. My mom and sister knew that seeing all of the party decorations would make me upset when I got home, so they went to my house and put everything away for me. Might seem silly, but I thought it was really thoughtful of them.
     
  11. chelsedin

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    There are so many I could list... and we have only been living with DD's D for about 3 months. What still gets me teary eyed to think about is one particular experience on the day of diagnosis. We had brought DD into the local medical center ER, and when they determined her state, they quickly opted to airlift her out to Children's Hospital about 90 mins away. I was told that it was highly unlikely they would allow me to ride in the chopper with her, but to wait and see just in case. When the pilot and team arrived, they were so incredibly kind and sympathetic. The pilot and copilot hugged me and immediately asked me if I'd like to ride along. They allowed me to hold an oxygen mask on her the whole ride there and talked to me positively about her diagnosis. I was so overwhelmed by the compassion and kindness provided that was above and beyond their jobs, and will never forget that.
     
  12. DsMom

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    After re-reading my post, I knew someone would pick up on that!:eek: I don't really restrict his food choices in general--but will say no (mostly) to things like doughnuts, hot fudge sundaes, or other super sweets in cases other than special occasions. Especially if he happens to be super high and the treat is not really necessary (i.e., birthday cake or another party situation). But he will have doughnuts sometimes and generally eats what the family eats--including snacks. To me, denying him at all feels bad--and feels like too much.
     
  13. HanksMom

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    We're new to this, but three things come to mind that when I think of them, remind me how blessed we are.

    1. My brother-in-law's girlfriend is running a mini-marathon, and decided to do it as a fundraiser for JDRF in Hank's honor.

    2. We have 2 friends who have completely jumped in with us head-first into learning all about Hank's diabetes. We trust them to leave him with them, and for Christmas, we received a gift certificate for a night out at a great hotel just to get a good night's sleep. Now we need to find a time for that night... :cool:

    3. Both sets of Hank's grandparents have shown a tremendous willingness to learn about Hank's care, though they live 600 miles away.

    Great thread!
     
  14. Tripletmommy

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    What a wonderful thread!!! A few things stand out for me...

    1. When Bella was DXd and we had to spend a week in a hospital an hour and a half away, my mom was here in 20 minutes and spent the week taking care of Allie and Maddy (as well as cleaning my house from top to bottom - you can just imagine how much a task this is considering I had three 2 year olds at the time!!) :)

    2. Bellas school nurse heard we were coming in for K reg. in April, and made it a point to come find me and let me know that we'd be starting meetings and trainings in June (so everyone involved was well versed in D care by the time Sept. came around). She then invited us in almost weekly for lunch for the rest of the year so she could do Bella's checks and pumping. She then hired us a fantastic health aide for the 2 T1's in our school and trained her as well. She had the administration change around the whole schedule for each of the grades so far (K-2) just because she knows what schedule works for Bella and the other child, and she wants to keep them as safe and healthy as possible. She has just put in so much time and effort into making sure that two out of almost 500 kids are safe and happy and well cared for and managed. And that to me is the most wonderful thing anyone can do for our kids.

    3. The most recent thing would be: Jason works for a radio station, and they were throwing around the idea of putting on a snowmobile ride... Someone had mentioned trying to do a ride for charity, and another person said "hey, we could do the JDRF and donate the $ in Bella's name" So the station hosted the ride, with radio and web advertising for the JDRF, and each person who participated paid $15.oo to ride.... We raised almost $800 and it's all being donated in Bella's name
     
  15. txmom

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    My son made the varsity ice hockey team shortly after he was diagnosed. We were really struggling with lows when he exercised - I was a little frantic.

    Our endo came to his first two practices and worked through a plan with him so he could play. I was really impressed that she would take two evenings to work out a plan with him.

    It took a few games for me to relax and enjoy watching him play but now I am as relaxed as any hockey mom.
     
  16. heamwdevine

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    Anna's friend's mom invites Anna over all the time, told me Anna was welcome to sleep over anytime and that she'd even sleep next to her. She's had her over many times and taken her on day long trips and now knows how to take care of her almost completely. I'm sure she'd even be willing to learn pump site changes if I needed her to. What an amazing friend and person to care enough to learn and take the time to call me and check if what she is doing is right for Anna. I especially thank her for giving Anna the chance to enjoy things where most other parents just don't ever invite her over or will just let her stay for a little while.
     
  17. virgo39

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    There are actually very, very many:

    Our pediatrician gave me her personal cell phone number and asked me to call her after discharge, to see how things were going.

    My 19-year old nephew showed up at my house the day after we got home with multiple copies of Calorie King.

    My mom showed up with a digital nutritional scale.

    DD is adopted, my sister said that when she heard the dx she knew why DD was placed with us.

    The most amazing thing was that my then 24-year old nephew who has a very special relationship with DD (they play at the park together, search for great sticks, he treats her as though she can do anything), visited us at the hospital. The CDE was there. She had DH and me do finger sticks and my nephew said he'd do it too. Then she had DD inject us with saline. My nephew said, sure, he was going to do that too.

    That night, my niece, his sister called and expressed amazement about what he had done -- he apparently has a real phobia about hospitals and shots -- to the point where he had needed his sister to accompany him for his own flu shot. You never would have known it at the hospital ....

    When people suggested that we would not host Thanksgiving, DD announced "we're not cancelling any parties."

    DH's aunt showed up on Thanksgiving with uniformly sized, home baked treats with carb counts.

    It just goes on from there....
     
  18. Noel

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    Been at this for quite awhile and there have been many things but most recently there is 1 thing that really sticks out...

    Last week Aidan was invited to a sleep over for my nephew (Keith's brother's house). Walking out the door Aidan was a whoppy 58 with a brand new site (ALWAYS sure to bring on a low in and of itself)...I knew it is was going to be a long night! Pizza, cake, runnning around...only to make it worse. Although my brother in law is well versed in "Aidan care" this is almost a set up for a "perfect storm night". Keith went upstairs, through on his sweats and said, "I'm going and I'm staying, you are staying here and getting a good nights sleep b/c he will be fine, I will be with him all night".

    Aidan actually getting to go to a sleepover is priceless in itself. Me getting a good nights sleep because I know he is safe on top of that is...speechless :cwds:

    Aidan thought it was cool that Keith was one of the guys and my nephew thought he was something special because Uncle Keith came to his party and stayed! Of course my husband and his brother are both big kids themselves so they fit right in!
     
  19. kimmcannally

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    All my most touching things came from people on this board. I've been sent IV Prep, insets, cleo's, and a compact plus meter and a lot of drums all from people not expecting anything in return. Oh, and a one touch delica.
    So many people I've never even met sharing supplies with us while we got things figured out about what we wanted to use, and helping us with that meter and drums after my stupid mistakes.

    I don't know what we would do without CWD!
     
  20. momof2here

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    touching things since dx...

    When my son was first diagnosed and we were up in his room at Children's Memorial, my neighbor, who is 44 and type 1, drove the 1.5 hours and visited my son in the hospital to have a talk with him. She is the picture of health - perfect figure, beautiful hair, beautiful face - etc. She comes in to his room and, my son (who was upset, depressed, sick, etc.) got to see what type 1 diabetes can be like for him. You can have your health, an insulin pump (instead of what he perceived as horrifying shots - at that time), continuous glucose monitor and a very positive perspective on life (which she ALWAYS has).

    At the time, my son didn't really show that it impacted him in a positive way. He was responsive to her but overwhelmed by this diagnosis so it didn't really show. I do know that that experience resonated with him. That talk, her visit, was pretty much the most important thing that happened early on to help him to perceive this in a better light. The better light didn't illuminate for a long time to come, though. Nonetheless, it was absolutely a very important part of helping us all to be okay with the diagnosis (and, of course, that took time).

    Also, my son hosted a lemonade stand to benefit JDRF three months after diagnosis. We had people that we know, many that we didn't and people drive from a distance to wish my son well as well as to make donations to JDRF expressing their strong hopes for a cure. We had a few people who are even now on this forum stop by to talk/vent and contribute. The support that people showed was inspiring.

    One final thought, due to a horrific school experience for my son, where the administrator and one teacher in particular were abusive relating to his type 1 needs, I was in constant vent mode for a while. We had to relocate in order to protect my son and haven't looked back. At that time, there were a few members of this forum that gave us the strength and knowledge to work through the trauma. Additionally, Kathy Sego, ADA Advocate, as well as an attorney from ADA were extremely supportive. Kathy travelled from way down south in Indiana to the top of Indiana on a few occasions to try to get my son's school (particularly the principal/nurse and one teacher) to see the light. Her dedication and support was awe inspiring. The attorney from the ADA and his assistants also spent their time toward trying to get my son to get a fair school experience. The support provided was beyond what you would ever expect and yet it was so necessary in the scheme of things.
    In the end, the situation was so dangerous, we elected to cut our losses and uproot our family by buying a home in another district and that was, as it turns out, an extremely intelligent move. We gave up alot in order to do that but we had to do what we had to do. Knowing that Kathy and the attorney from the ADA gave so much effort and dedication in our situation, while the situation wasn't getting any better, really clarified that our position was hopeless in the previous district. I am grateful that we were able to realize that before my son suffered many more ill effects. I am grateful to them for their strong convictions and selflessness as they tried so hard to help my son.

    As I was on an urgent home shopping spree to buy a home within a couple week period, I placed a call to a few districts and briefly interviewed the secretary (you know, the heart and soul of a school) to get an idea about the climate of the school. At the school where we landed, I'll never forget my hour long conversation with the kind secretary. I never talked specifically about the previous school's name, the specific experiences or people involved. I just expressed how type 1 impacts my son during the school day and how willing would they be to work with his needs. Her comment was - "Oh my, we are very protective over our type 1 kids at our school" - gosh, that comment absolutely sold me! In the face of horror over the treatment at the other school I am hearing that they are protective of the type 1 kids - she went on to define that - that they are watchful, aware, educated about what a type 1 child might need at any time and how to take care of their needs.

    Then, after we picked that school, I found out that a teacher (who is now my son's teacher and my daughter's best friend's mom) has a type 1 son and the secretary has a type 1 niece (yes, that same secretary). Gosh, I cannot stop with the postive, I am on a role, one last thing (maybe) - the principal actually called a meeting and asked me if I could speak with all of my son's new teachers to make sure that everyone is on the same page about his needs. This was unbelievable to me... a total contradiction to the previous school. During the meeting, he asked me to show Glucagon and demonstrate how/when it is to be used. THEN, the principal took out my sample glucagon and, in front of his group of teachers, went through each step of how to use the glucagon/prepare it properly. That was also something that I thought was one of the nicest things that had been done since dx. His interest in my son's wellbeing and the role modeling that he was doing for his staff (how to treat a situation properly) was priceless.

    You may be thinking, how is it, with other type 1 kids in the building, that they didn't already know about glucagon? I wondered the same thing - I still wonder that but I haven't asked that question.

    Gosh - I am sorry, I have another - a kind member of this forum sent me a bunch of packets of barrier wipe that she didn't need and that really turned out to solve a skin issue for my son. Without her sending those, I don't know if I would have ever found the right product!
    There are others but those are my top choices.

    This thread is a very good idea - kinda like a Chicken Soup for the Type 1 Parent's Soul... I like that!
     
    Last edited: Mar 6, 2011

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