Tag Archives: cure

How Life Changes after Diagnosis

struggleAfter the immediate devastation of a Type 1 Diabetes diagnosis for your child, the ebb and flow of the severity of how life changes after diagnosis is difficult to describe.

On one hand, the diagnosis brings a determination you didn’t know you had.  A determination to enjoy the fullness life has to offer, a thirst for the faith you may have haphazardly thrown on the back burner, a newfound purpose, and all of these are found at the bottom of the hole you are forced to attempt to crawl out of.

As we approach our three-year mark of Carter’s Type 1 Diagnosis this November, I look back and see that I have been through the many stages of grief many, many times.  These days, it’s not really clear what brings the grief stages again.  Maybe it’s the after summer blues, maybe it’s watching your son explain what his insulin pump is to those who stare at the beach or the pool, maybe it’s the built up exhaustion, who knows, but I do know that some season’s suck more than others.

Watching your child grow up, carrying this burden is bittersweet.  I remember standing in the hospital during diagnosis week, and wishing for the day when Carter was able to understand, when he would then be able to  take an active role in his care.  That day has arrived, and it’s more heartbreaking than I anticipated.

Watching your child realize they are different from their peers is hard.  Birthday parties, getting together with their friends, going to the beach, going to the pool, having to constantly interrupt his fun to do a blood check, or correct puts a damper on his fun.

I don’t think the change is a one time event, I believe after a diagnosis of that magnitude, we are ever-changing, always evolving and taking on what comes next.  We are always growing, individually and as a family as it pertains to Carter’s care and management, most often within each moment.  No one day is ever the same, and the worries that each day bring are always different, and changing.

The hardest days for me, are the ones where I can sense Carter is tired of it all.  On those days, my heart breaks just a fraction more.  I would give anything to take this burden from my son.  It affects our whole family, as my daughters are left with a shell of a mother most days.  Lately, exhaustion takes over and I walk through the day an ill tempered zombie.  Always tired, always worrying, always only half present in what is going on as I watch Carter like a hawk.

Will it get better?  Until there is a cure, I don’t think so.  We have decent days, and have fallen into a routine that works for us, but it isn’t void of immense effort and complications.  The frustration and disappointment are too much to bear some days, but we preserver and move on.

My son and daughters, exemplify the forbearance of those who know where this path leads.  We’ve traversed this road more than once, and we know that we come out of these trials stronger.  All in all, I see how their brothers health worries them, especially Ashleigh.

We fall down.  We pick ourselves back up.  We cry, we laugh, we are like any family, we just cling a little closer, because we are faced with the threat of possible loss every minute of everyday.

Diabetes Makes Me Different

My siteCarter: Mom, I want to take my site off.

Me: Why Buddy?

Carter: Because I don’t want people to laugh at me

Me: Who would laugh at you?

Carter: People

Me: Why do you think they would laugh at your pump?

Carter: Because it makes me different.

Me: You earned that pump, it’s what keeps you healthy. If anyone laughs, or tries to make you feel “different”, you tell them it’s your bravery patch that you wear. Tell them that they wouldn’t think getting poked with a needle for every meal would be that funny if they had to do it. Buddy, your pump does make you different, it shows how brave you are, how conscious of your health you are, and have to be, and it’s the best tool we have to keep you healthy.

Carter: OK mom.

Me: I love you buddy…..

Carter: I love you Mom.

I cried, I went downstairs and cried for about 15 minutes.

The best part of this conversation, was that my six-year-old heard it and came in to Carter’s room to reassure him of his bravery. She also told him that she would always protect him and wouldn’t let anyone laugh at him. I have watched Ashleigh protect her brother, when at birthday parties, or even at the park, she has fiercely defended her brother, and I know I can count on her to protect her brother’s spirit and feelings.

I hate that my son feels different, but am so happy that I gave birth to a fierce warrior who will assist me in protecting my brave son, and will make sure that he is not misunderstood.

This is exactly why I let Carter put a site on my arm, I don’t ever want him to feel alone.

Type 1 Diabetes, Two Years Later

11.20.15It’s two years later, and what have I learned? I’ve learned never to have expectations from Type 1 Diabetes, whatever I expect Type 1 to do, it will do the opposite.

I’ve learned that no matter the efforts, no matter what the statistics have been with Carter’s numbers for the past week, the day I think all will be well, it won’t.
I learned that in an instant, everything changes.
I’ve learned a new depth of sorrow. I’ve learned how to rapidly pull myself out of that hole, so I can manage Type 1 for my son.
I have learned who my real friends and family are.

I have learned to walk alongside something I hate with every fiber of my being, and work with it, not against it.
I learned that Type 1 Diabetes is a family disease and it affects my daughter, Carter’s older sister, just as much as me.
I have learned how to push past the distraction, past the pain, past the disappointment and love like I have never loved before.

I have learned how to value life, how precious every moment truly is.
I have learned patience, perseverance, and passion in advocacy.
I have learned about how I am in charge not only of my happiness, but the happiness of my children, especially my son after each poke he endures.
I have learned, that no matter how tired, how defeated I feel each morning, MY mood sets the tone for the rest of the day.
I have learned to really celebrate the victories, as they are few.
I have learned the true definition of surrender. My biggest adversary is something I cannot control.
I have learned the depth of a mothers love, over and over, and over again.
I have learned what it means to never give up. Never give in, and never back down.
I have learned how to live under constant pressure.
Most of all, I have learned a convoluted, antiquated process filled with algorithms that are necessary to keep my son alive. Insulin is not a cure, it is my son’s life support. I hate the process, but I love the outcome. I remember that on November 20, 2013 I was faced with losing my son, and I will do everything in my power to make sure that never happens again.
I learned about my strength, I learned that no matter how wounded or scared my heart is, I always have the capacity for great love for my children.
I have learned that through tragedy, come great triumphs. I hate Type 1 Diabetes, but I love what it has brought out in my family in these past two years.

Walking for a Cure

JDRF Walk - 4.514
JDRF Walk – 4.514

It was an amazing day, we joined JDRF, San Diego in walking for a cure for Diabetes.  I loved the event, as did Carter and Ashleigh.  The kids were able to jump in a bounce house, and color, do arts and crafts, and Greg and I were able to talk with other diabetic parents.  JDRF put such a wonderful walk together, and it was wonderful to be able to meet more parents that have been a part of the support system I have come to rely on.  Today was such a welcome distraction from the crazy blood sugars Carter has ben having lately, not to mention the doctors appointments we have been inundated with this past week.  I felt I could finally breath, being around like-minded people who understand where I am mentally, physically, and emotionally.  I can honestly say that the friends I have made within the Diabetic Community are friends for life.  To be able to lay your heart out and have someone know the exact emotions you are going through is a treasure.  In speaking with another parent of a T1, I find I finally have the ability to let my guard down, and just be.  No explanations, no façade, just to be able to have someone listen to you and say “I know what you are going through!”, makes all the difference.  I am continually validated and supported, it’s a wonderful feeling.  Carter was beside himself with excitement at the opportunity to be running next to the diabetic alert dogs, and Ashleigh was ecstatic to be around the other kids and her aunts and uncles and other family that so selflessly came out to support Carter and all the other Type 1 Diabetics who were walking for their own strides toward a cure.  It’s so wonderful to be able to get together and feel like one huge extended family with the other T1D’s in our area.  I am so fortunate to have found the online community, and would encourage anyone who is dealing with a new diagnosis to reach out, the interaction I have with the DOC (diabetic online community) is a lifesaver, and I receive the best advice from people who have been managing either their own T1 for over 20+ years, or parents who have successfully managed their child’s T1D and are a wealth of information.  Today, as we crossed over the starting line, the MC walked up to us and gave Carter a high-five and announced him and his plight over the microphone.  It’s in those moments that I realize the enormity that my son manages everyday, and I wonder when it will cease to affect me so deeply.  As I got my emotions in check, and watched my little boy run freely I felt some of the holes in my heart mend as I was able to interact with some of the other T1D parents, and watch Ashleigh running with her brother through the finish line and beam with pride at her accomplishment.  Today was a wonderful day, surrounded by family and friends who support me and my immediate family in ways they could never understand.  I am so proud and blessed to have been a part of the JDRF – Type 1 Diabetes Walk for a Cure today, and look forward to the new ways we can get involved to help us all get one step closer to a cure that we all so desperately need.

For more information on JDRF, and how you can assist in finding a cure, visit http://jdrf.org/

High Numbers, No Ketones

Mommy and Carter - January 2014
Mommy and Carter – January 2014

So lately, Carter has been having high numbers, but no ketones. Thankfully no ketones, but his numbers have been above 300. He is getting his 2 year molars in, so the inflammation is likely the culprit. I continually am astonished by how amazingly our bodies are made. I have such a new-found respect for the work that our Pancreas does, given that I have been promoted, and Pancreas has been added to my job description. Being face to face, daily, with all the things that can happen to a body with a non working pancreas, who knew that this organ was so beneficial to our existence? Being as exhausted as I am , I watch what I put in my mouth so much more now…..I certainly don’t want to wear my Pancreas out, especially now knowing what it’s job title includes. Today we heard from our Endo and he changed our sliding scale so hopefully that will change the readings for the better. It’s so hard with this age (Carter is now 20 months) and the fact that he isn’t really talking all that much, but generally he is pushing boundaries as it is, to know when he is acting out because he doesn’t feel good or because he is almost a two-year-old. Vacillating between terrible two behavior and whining because he feels like crap, I find myself blowing through test strips. Lately I have been checking his blood sugar 8 or more times a day to make sure he isn’t low before he gets “in trouble.” It’s been great that he hasn’t had any ketones, as this leads to a hospital visit; I just wish we could get a handle on his numbers. It’s unnerving to see numbers over 300 because I know that it wreaks havoc on other areas of the body. I understand we are still in the early stages of diagnosis and are essentially learning through trail and error what works and what doesn’t with Carter’s body. I try to put everything in perspective and realize that have a team of doctors monitoring him. Everything just boils down to having patience, which I have always struggled with. Then it dawned on me, this is much bigger then I even imagined, it’s a growing experience…..for all of us.

Diabetes felt so lonely, until I met the DOC

Carter 10.29.13
Carter 10.29.13

I remember in the first days of diagnosis, once we were home, though I had the emotional support of my family, Diabetes felt so lonely.  It seemed that though my family was being there for me emotionally, they couldn’t understand what my day was like minute by minute.  It was becoming too laborious to explain all of the time, I could feel myself turning inward.  That is when I decided to start blogging, through that experience I met so many other great bloggers, some of whom introduced me to the DOC (Diabetic Online Community).  It was great to be able to talk with people who had children Carter’s age and let me know what their experiences had been like, and to speak with mothers who have older children, yet remembered what things were like when they were newly diagnosed as well.  It was such a nice feeling to “belong” and to be understood with minimal explanation.   It’s a funny feeling, getting a diabetes diagnosis, and for me it wasn’t one of those things I wanted to just figure out on my own.  I enjoy being able to speak with other mothers of diabetic children and have my feelings validated, like feeling exhausted and emotional were all normal.  Being able to ask questions of them, such as how they deal with feeling burned out etc, is so nice.  It solidified my stance that I will put Carter in Diabetes Camp when he is of age and until then will look into a family camp we can all go to.  I want for Carter to be able to have friends who know first hand what it feels like to be the diabetic.  Though this is a family disease, and we all adjust to it, I want Carter to be able to connect with others his age who understand exactly how he is feeling and what he is going through being poked all the time, or what it feels like to have a high reading, or a low one.  I believe connecting with people who have had the same experience is detrimental to a healthy understanding of living with diabetes.  That was one of the reasons why I started blogging, one to release how I am feeling, but also to link up with others who share my experiences.  One is such a lonely number, I am grateful for the friends I have made post diagnosis, and for their wisdom through experience, that they have so openly shared with me.   It’s amazing to me the community of people with diabetes and how everyone comes together to help a newly diagnosed family.  There has been such an outpouring of love and a mutual respect for each other and what we go through day in and day out.  It’s as though we all have an understanding and common ground without even saying a word.  I have learned more through the experiences that other mothers have shared with me, and those experiences have helped me in some of my times of need with Carter.  From the bottom of my heart I want to thank the DOC for welcoming me and my family with open arms, and for having such a deep understanding of how our lives have changed.  It’s so nice to know that I have you all to lean on when times are tough, I hope at some point I am able to be there for all of you in the same capacity that you have been for me.

For more information on Diabetes Camps for kids, click here. 

Join a Diabetes trial, or not to join a trial?

Carter Sun
Carter at the park – 1 month before being diagnosed

One of the questions I have been burdened with post diagnosis is, to join a Diabetes trial or not to join a trial.  I don’t necessarily want my son or my family to become guinea pigs for science, but then am I impeding a cure for Diabetes?  It’s such a fine line, in my opinion, once diagnosed to battle.  It’s unreal, the way the endocrinologists will rattle off all these trials that you would be lucky to be a part of, but the reality of the situation is that you will be signing you and your family up for being poked and prodded in an effort to gain some semblance of an understanding as to why Type 1 Diabetes decided to rear it’s ugly head in my family.  At the end of the day my husband and I decided that our son gets poked enough and we will leave the Diabetes trials up to others who may be more ambitious then us.  I want to find a cure more then anyone, but realize that this early in “our” diagnosis, we have different things to focus on.  I need to be paying attention to preservation of shot sites in order to make sure our sons connective tissue isn’t impaired, and monitor his blood sugar and diet (which is a blast with a 19 month old….).  Being only 2 months in, I revel in the selfish stance we have taken by not placing our son in a trial.  I mean, if I’m being honest, since we left the hospital I feel like I am in a constant trial.  I never know how my day is going to go, we could have a wonderful morning with amazing readings, only to have a 3 hour nap that results in a catastrophic high glucose reading which leaves me scrambling to lower it with activity and water before the next blood check that I have to record, lest I be accosted by the endocrinologist for the high blood sugar reading, and discussing all I did wrong in order to have a level that high.  At this point, there is enough pressure on us, I believe our decision was the best for us at the present time….we are doing just fine being a part of the Carter Cheatham trial and trying to figure out the best ways to manage our son’s blood sugar with diet and exercise.

To find out more about Diabetes trials, you can visit the National Institute for Health to see what trials may be available.