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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.

Barely Hangin On

Carter 4. 2016I’m not quite sure what landed me at this edge, feeling like I am barely hanging on. In a way, it feels familiar, like I have camped out here before, frequently.

Maybe the gateway to this campsite is illness. Any sickness that Carter contracts brings an anxiety that is difficult to describe. Most minute illnesses we get through without any issue, then there are those that land my son in the emergency room. This past Thursday was one of those times.

We had been battling the stomach flu, it began with Natasha, my 11-month-old, worked its way to Ashleigh, my six-year-old, and finally latched onto my three-year-old Type 1 Diabetic son. Both my daughters threw up twice, replenished fluids and rested and recovered within a full 24 hours.

Carter, began throwing up at 8:00 am and by 6:00 pm he had thrown up 8 times. He couldn’t keep anything down. It was at that point that I called the endocrinologist. Although his blood sugars were good, I could see the beginnings of something brewing. Dehydration, Diabetic Ketoacidosis (DKA), when Carter’s eyes started to look sunken in, I knew it was time to take him in.

Lately, I feel as though I am starving for mercy.  It has felt like one thing after the other as I struggle to hang on to the edge of the cliff I fell off of three long years ago.  Watching my son battle Type 1 Diabetes has been humbling, heartbreaking, and unequivocally stressful all at the same time.

I am tired of the guess-work that it requires to keep my son alive.  I hate that I can look in his eyes and see that he’s heading toward a low, or a high blood sugar, yet at the same time I am grateful.  Grateful that through immense trial and error I now know how to see it in his demeanor before it strikes.

I’m sad that the hospital is a close comfort, because I know that they have everything at their disposal to save my child.  I hate watching my son be brave for all the pokes, all the site changes, all the IV’s, and all the scar tissue which is evidence of his condition.

Being on the brink of a breakdown seems to be where I have set up camp.  I don’t know how long I will stay, or if my camp will ever move on to acceptance.   I do what I can to find a way to survive where I am, never having all the answers, always having to fight, not just for my son’s life, but for understanding from the non-diabetic community.

Those who don’t live this life, 24/7 don’t understand the difficulty.  In a way, I feel it is my duty to report what we go through.  Maybe to raise awareness, but mostly to raise empathy.  I would hate to watch my son navigate through an environment where no one knew what Type 1 Diabetes entailed, and had no idea how hard it was to live in a world that requires constant vigilance and monitoring.

Carter was released 5 hours after being admitted to the Emergency Room, luckily that is all he needed this time.  I caught him in dehydration, and the beginning of DKA.  I’m glad that I caught it, I’m happy that I stopped DKA in its tracks, but angry at the same time that my son is continually haunted by the possibility of an illness where he is worse off than his sisters because of a misunderstood autoimmune disease that doesn’t play fair.

I would be remiss, if I didn’t document these trails, if I didn’t talk candidly about the world that the majority of Type 1 Diabetics live in, just on the brink, the brink of  life, which consequently also is the brink of insanity.

I believe that is the cliff I have been hanging on for the past 2.5 years, the brink of insanity.  Knowing at any moment my son could land in the ER, knowing that my tireless efforts throughout the day, are futile, knowing that even though I live in “groundhog day” the outcome of each day managing Type 1 in my son, always delivers a different outcome.

It’s unfair, it’s inconsistent, but it’s our reality.  It’s our hell, it’s our purgatory, until there is a cure.

The Impact of Type 1 Diabetes

Carter and Daddy beach June 2015It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.

It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed.  Everything continues to change.  Relationships,  outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.

Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids.  There is no common ground anymore,  ground where you can relate with what your other friends are going through.  Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.

The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand.  People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested.  Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.

Extended family, old friends, new friends,  there is so much to explain, all of the time,  so much to be judged on by the unknowing  eye.  In an effort to remain protected,  you disconnect.   Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.

It’s refreshing when you surround yourself with those who have been through the dark tunnel you have.  Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.

The reality is that having a child with Type 1 Diabetes, death is always shadowing you.  Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked.  Type 1 Diabetes, for all intents and purposes is a silent disease.  One that isn’t visible, and  one that shrouds the care that is necessary in mystery, but for those who live it.

As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be.  That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed.  We didn’t even understand what we needed to survive.

Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis.  It takes some time to be OK with those who judge or wallow in the hurt of being left behind.  After all, there is a bigger purpose here, a bigger calling.  Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.

 

Type 1 Diabetes and PTSD

Carter HospitalWhen your child is diagnosed with Type 1 Diabetes, you are left with scars. Scars you don’t even realize are there, until the scars get ripped open again.

Sick days have come and gone throughout the course of this past year and a half of managing my son’s Type 1 Diabetes, all without incident.  This week, everything changed.  The dreaded return to the hospital inched closer and closer.

Carter started a fever on Wednesday afternoon, an afternoon where we happened to be on our second day of a mini vacation and 300 miles away from home.   I monitored his symptoms and fever, and Thursday morning his ketone strip showed he had large ketones.  Carter hasn’t had ketones since his diagnosis in November 2013.

At first I panicked, then I called Carter’s Endocrinologist.  We walked through the care I needed to provide, and we headed home.  By Thursday night I had reduced his ketones from large to moderate.  By Friday morning his ketones were back up to large.  It was then that I decided to take him to the Children’s Hospital.

Since this was the hospital he was diagnosed at, walking in after almost two years was rough.  I felt a twinge if PTSD as we entered the hospital.  Being in the ER was new, but when we were admitted, walking onto the peds floor, the smell of it took me back to November 2013, Carter’s diagnosis.  I was overwhelmed with heartache.

Being a parent, especially one to a child with a disability, carries an extra heavy weight with it.  The decisions we have to make aren’t always the easiest ones, often times they involve admitting our child to the hospital where we know there will be pain and suffering in order to catch up to survival.

Watching my now 3-year-old struggle with fear while we sat waiting for the IV to be put in was horrible.  I wanted nothing more than to scoop him up and walk out of the hospital and go home.  I knew that wasn’t an option.  I knew if my son had any chance of getting over this virus without entering into Diabetic Ketoacidosis remaining and getting an IV was the only solution.

Being in the hospital with the year and a half’s worth of knowledge we reluctantly have learned made this stay extra frustrating and difficult.  Knowing the specific things that worked for Carter within his care and having pushback from the nurses who weren’t familiar with managing Type 1 Diabetes in such a young child was unbelievably frustrating.  Yet it reminded me that no matter the situation, even with medical staff, I am always my son’s best advocate.

Reliving what we went through at diagnosis, thankfully on a smaller scale, brought back so many old feelings, and unwrapped scares I thought I had successfully allowed to heal.  I started to get angry, but decided to pour that anger and sadness into fighting harder for a cure.

Although our latest overnight stay at the hospital was difficult emotionally and physically draining, it was necessary for Carter to get well.  It also allowed us as a family, included Carter to grow when it comes to managing Type 1 Diabetes in him.  We are now all acutely aware of new ways to assist in reducing a hospital stay, and were reminded how quickly things can change when it comes to life with Type 1 Diabetes.

The Birthday Dinner

IMG_0417Given that it’s Carter’s birthday, we decided to go to dinner after being at Disneyland all day. Sitting at the table, I gave Carter his shot of insulin and the moment I put the needle back in his bag a different waitress was standing in front of our table. I looked up and she offered me a high-five, as I high-fived her she said she was a T1 Mom herself and she admired my courage dosing Carter at the table.

We began talking and she let me know her son was 10 and has T1 and was diagnosed at 7 years old.  It’s so amazing how the Type 1 Diabetic community always finds a way to connect.  It’s the type 1 Diabetic community, especially online who has been there for me through thick and thin throughout this whole ordeal I have been living for the past 6 months.   It was wonderful to be able to speak one on one with another T1 Mom and connect on a level that others don’t understand.  It was even more special to get accolades for owning this disease that tends to debilitate others.

I found immense comfort in the validation and recognition of the effort that I put into this everyday.  When the harsh reality is that every night, I get 2 short naps in between the blood checking and glucose regulating that happens when everyone else is sleeping.  We as T1 parents do all of this gladly, knowing it enables survival.

I find conversing with other Type 1 Diabetic parents so refreshing, there is an unspoken understanding that we share, and an understanding of how hard life really can be.  I wear the kudos as a badge of honor, and a testament of my son’s health.  On my son’s 2nd birthday, I found it wonderful that he was showered with recognition and praise for the battle he is winning with every minute of everyday, from another mom who has a complete understanding of what our days are like.  The diabetic community is amazing, and I am so lucky to be a part of it!

DOC Blog Week

www.keepcalm-o-matic.co.uk
www.keepcalm-o-matic.co.uk

It was such an honor to participate in the diabetes blog week this past week.  It is amazing how the Diabetic Online Community has become like an extended family to me in so many ways.   I find it so wonderful that I know I always have people who understand what I am going through at every moment of my son’s diagnosis.  I have relied on the DOC so often in the past five months as I desperately worked to navigate through this Type 1 Diabetes lifestyle.

When I look back at this week, my absolute favorite part was having so many blogs to choose from and immerse myself with.  One of the best aspects for me was the variation of writings, I was able to find other mothers who blog about their day-to-day lives with their T1 children, but was also able to get a view into the future and hear from the other side.  Adults who have successfully managed their diabetes and are thriving and enjoying their lives and accomplishing so much in spite of.

This week, the biggest thing I have received is encouragement at all of the inspiring Type 1 Diabetics who selflessly function all day, every day and champion the day-to-day tasks they have to in order to survive.

To say I am inspired by the diabetic community would be an understatement, I am humbled daily by the courage and determination that is required to shoulder this disease.  It takes the strongest to survive and not only survive but find joy.  I have been given a gift this week, learning how the adults with T1 manage, and the permission to be human and voice how some days really suck!

A huge thank you goes out to Karen Graffeo at www.bittersweetdiabetes.com for putting this wonderful week together, and for extending the invitation to so many of us.

I am so grateful for the friends I have made since my son’s diagnosis, and know that I can make it through every situation diabetes throws our way when I have the DOC to lean on!

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/