Monday, June 18, 2018

Part 2: Our Journey with J...a multi post about fostering a child with chronic illness

Thank you for your patience! Part 2 is here...this part is what I explain as God's hand. I'm not here to debate God with you. You can chose to believe or not to believe. As for me and my family we chose to believe that God's hand was guiding our journey.

If you haven't yet read Part 1 you can do so here.

To refresh you; I left off with coming home from my run asking my husband if he wanted to foster one of my camp kids to which he said, "Yes" without hesitation. But let me fill you in on the backstory as to why this was somewhat frightening. My husband had just been let go of his job of almost 20 years just a month before. While he did get a buyout package we were in no way financially set to take on another child; let alone one with Type 1 diabetes, mental health issues and unknowns. I remember talking with him about this and how awful the timing this was the last thing we should be doing.

But we both felt led to do this and at total peace in the decision.

The next day I went into work and contacted her Court Appointed Social Advocate or CASA. I emailed her and asked what she thought about having J come live with us. She of course was super excited and contacted some people at Jobs and Family Services or JFS. I received a phone call from someone at JFS who drilled me on my relation to J, what I was wanting to do, if I was in the "system", foster parenting classes, kinship and a host of other things that I had no clue about. All I kept saying is that we wanted to get her out of the hospital. I  hung up the phone a little deflated as it seemed like this was going to take a looonnng time. The thought of foster parent classes, certification, home studies; etc. It appeared as if it was going to be another 2-3 months before we could even get her out of the hospital and that was too long. Our only hope was kinship. Since I had an established relationship with her previously through camp this was our angel.

I am a do-er. Those that know me well know that when I am set on something I go for it. I'll attack it at every different angle to get the desired outcome. My wheels were spinning. I have a friend who had fostered to adopt. I called her to bend her ear...thirsty for information, answers and hope. I explained our situation. Told her everything about J and she literally began screaming. I was thinking to myself that something must have had happened to her but see this is where God's guiding hand comes in. You see; over the years my friend had gone on to get her master's degree in social work. She was currently employed by the hospital where J was staying AND... J was her patient!!

There are no coincidences.

She went into action. She did everything professionally. Told us who to contact, get our background checks. paperwork filled out. She checked with supervisors, got us a visitor code and got things in motion and then excused herself from the case due to conflict of interest. She was amazing!

Within a few weeks we were able to visit J, give her hope that she had a life outside of the hospital. That there were people fighting for her and ready to help her get where she needed to be.

Our number one goal = get her out of the hospital!!

We were getting closer to that goal.

Wednesday, May 30, 2018

Our Journey with J...a multi post about fostering a child with chronic illness

Memorial Day weekend 2018 would've marked one year that Jay had come to live with us.

If you are looking for a happy ending you won't find it at the end of this chronicle. In the end it was the ending that was to be...but it's not rainbows and unicorns.

The Beginning: 

I was a camp director for a local diabetes camp for several years. It was a wonderful job that I loved. I enjoyed talking with newly diagnosed families and how much camp would benefit their child. How scary it was to hand your child over for a full week but how necessary it was for everyone. As your child needed to meet kids going through life like they were and parents just needed a break from the D life. I enjoyed interviewing the staff each year. I loved seeing campers grow into counselors who then grow into careers in the medical field and come back to camp to serve as medical staff. I loved getting to know the medical staff outside of our endocrinologist much they truly love their jobs and the kids! I loved seeing the kids come in on a Sunday; sometimes scared other times happy; and then learn a new diabetes skill. I watched a camper give herself her first insulin injection (supervised!) and other campers try new insulin pump sites. The smiles on their faces made my day..they were so proud of their accomplishments!

But then the paperwork...that I could do without. There was a TON!!

Registration opened in February and families couldn't wait to sign their kids back up for camp. This particular camp would sell out each year so it was imperative for parents/guardians to get paperwork in to secure their child's spot at camp for the year. As camp director I have to look at all the paperwork that comes in from a camper. So not only additional medical issues but mental and behavioral issues.

There was one camper that I had grown quite fond of over the years. In my first year as camp director I noticed she had been placed in foster care as her mother wouldn't take care of her diabetes. As a mom of two T1D girls I couldn't imagine NOT taking care of them...I mean, sure, I would love a break but to actually not take care of them?! I didn't know that was an option. This particular camper had been placed in the cabin with my eldest daughter who served as a counselor over the years. This camper had a smile that would light up a room and was just loud and fun. We always enjoyed seeing her year after year.

In 2017 after looking at her paperwork I see that she had been hospitalized for suicidal thoughts. It sadden me. I remember thinking,"not sweet J"...that this stupid chronic illness had taken its toll on yet another one (and mental health and chronic illness is a whole different post) further review I noticed that she had been actually living at the hospital. I knew her Court Appointed Social Advocate, or CASA, over the years so I inquired as to what had happened. 

In talking with the CASA she shared that she had been at foster family number 2 and had some issues with self harming. It freaked out the foster family; as it does anyone dealing with kids who self harm. They had taken necessary precautions but in the end Jay landed in the psychiatric ward at the local children's hospital. At the time of my contact with her CASA; she had already been there for 8 weeks as they couldn't find placement for a Type 1 diabetic who self harmed and had suicidal thoughts.

I was heart broken...I knew this girl.

I felt helpless.

Later that night I went to run with my running group and shared my work day with my friend. After I was finished telling her my story she said, "what are you going to do?"

I replied, "nothing! What can I do?!"

She would later share with me that she knew I was going to do something.

I went home from my run and was greeted by my husband who asked how my day was...I blurted out; "want to foster one of my camp kids?" without hesitation he replied, "yes". I asked if he wanted to hear the story and he said, "no need to; someone needs our help."

And thus began Our Journey with J.

Sunday, November 26, 2017

When a Bleed isn't a Bleed

Wow! So much has happened since I last blogged but I want to get this story out to you.

Last month we celebrated our daughter turning 17! She rarely asks for anything but this year she asked to go to SkyZone (an indoor trampoline park) with some of her friends; so we said SURE! We also told our other kids they could invite a friend and we could make it a family affair. 

For those of you who follow me you already know I have a three daughters (yes...we added another...more on that later) with Type 1 diabetes and our son has hemophilia, a bleeding disorder. So the fact that we were going to a trampoline park hosts a whole set of different issues with both chronic conditions. For the Type 1 diabetics we have to worry about low blood sugars from increased activity. For our hemophiliac we have to worry about possible injury and bleeds. But...chronic illnesses be damned...we had a birthday to celebrate and we can't live in a bubble! 

We buy tickets for all the kids to jump for an hour and my hubby and I decided why not?! And we jumped for 30 minutes; we had a blast and also realized that we are old and can get hurt too but see my bubble comment above! 

How Jackson passes the time waiting for to be called back to his room at the HTC

The kids were in the last few minutes of their hour of jumping when our son came out and let us know he had a back bleed (he is lucky he is able to tell when he has a bleed before any sign appears). Darn it! We headed out; since we were done anyway and went home to infuse his blood clotting factor medicine. We iced him up and let him sleep in the King's Throne aka the recliner for the evening. The next morning he said it still hurt so we infused again; as it was his regular infusion day. Monday we called our local Hematology Treatment Center (HTC) and let them know that he was still in pain which was weird as he usually bounces back quite quickly upon administering his infusions. They decided he needed to be seen by the hematologist.

We head into the HTC and he is given an exam and gave us an adjusted infusion schedule. They decided he needed daily infusions and they would re-evaluate on Wednesday if he wasn't feeling any better. Wednesday comes and he isn't feeling any better. We head in and he is given another exam and a MRI. The Doctors are concerned he has a bleed along his spinal cord. This was his first MRI and he did a great job! He was able to watch a movie while the scan was being done so it wasn't too bad. 

The results were interesting. There was NO bleed. The diagnosis?

A herniated L4 disc...which is extremely rare in children. Not only that but the way in which it was herniated didn't allow for surgery or physical therapy; just rest. The best guess from the Doctors was the injury occurred when our son went for a trampoline slam dunk and twisted his back in conjunction with the bounce of the trampoline and how his body elongated and then compressed. He was told to not even think about the trampoline park for at least a month! 

We are now about a month out from the herniated disc and he is fully recovered! He has rested as best as a 9 year old can. Would we change anything? No. This didn't happen because of was a fluke could've happened to any of our kids...chronic illness or not. We choose to live our lives and have fun. We can deal with high and low blood sugars, bleeds and now herniated discs. 

Thursday, May 18, 2017

#DBlogWeek Day 4: What brings me down

May is Mental Health Awareness Month and today I will discuss the emotional side of diabetes.

It's not pretty. 

It's heart wrenching. 

As a caregiver I can't tell you how many lost hours of sleep I have had.

  • It may have been from being up all night keeping my daughters alive as their blood sugar is dropping lower or rising higher.
  • It may be from an illness where vomiting, changing sheets, pushing insulin, hydrating, ketone chasing and wondering when the right time is to call the endocrinologist.
  • It may be from the nights of what I like to call suicide watch. When your T1D loved one is so overcome with life that you worry that they will overdose on insulin. 
  • It may be from the worry that fills me when overnights at friends happen and I don't know if her CGM alarm will wake her when she is low. 
  • It may be the anger that fills me when my daughters have had to grow up years faster than what they should have and worry about what age they will die.
  • Maybe it's a combination of all these things.
I'm sure to some on the outside this sounds dramatic. 

Maybe it is. 

But maybe it is spot on. 

Instead of losing my mind...although some might argue that point...I choose to find things that lift me up. Things that help me work through the stress of having kids with chronic illness. That is why I write. That is why I volunteer. That is why I run. That is why I advocate. 

Diabetes is draining. To me...and I'm just the caregiver. 

I've seen how it affects my girls. 

I would gladly take it away from them so they could be carefree if I could. 

No one signs up to be a pseudo-pancreas. It's thrown at us. We have no choice. It's do or die. I have no medical degree. But I have a Momma Bear heart with a passion and fierceness that will kick ass for my kids and my family.  

To those on the outside reading have no idea the burden we carry. That smile that we have painted on our faces helps us get through the day. Give us a hug. Give us an ear. Give us compassion. 

For those deep within the AREN'T alone. It may feel like it but you aren't. Surround yourself with people or things that soothe and calm you. 

You got this. 

Wednesday, May 17, 2017

#DBlogWeek Day 3: the Blame Game

The Blame Game...part of my job at the American Diabetes Association, when I am not actively serving as Camp Director is Community Health Strategist. This involves going to health fairs put on by companies, schools, and hospitals in the community. A few months ago I attended a health fair at a big Cincinnati company. I set up my table with Type 2 Risk tests, Pre Diabetes fliers, diabetes statistics, recipe cards, healthy food options and what a healthy plate looks like.

The employees filed in and each of them were given a card that the vendor checks off and in turn they return to the company for a prize. I am stationed between Girls on the Run and Green Bean Delivery. I brought ADA sunglasses so at least I had something fun to give away because who really wants to stop by the ADA booth? What fun is it to talk about diabetes?

A few things I observed.

  • The employees who were Type 1 came by and we talked about their insulin regime, camp, initial diagnosis, how long they've had diabetes and I always let them know about my girls. We talked about upcoming Tour deCure and Stop Diabetes Walk opportunities and thanked them for stopping by. Overall tone of "diabetes sucks but nice to meet you and have a great day!"
  • The employees who were Type 2 spoke in hushed tones. They told me of their struggles and/or successes. They talked about their care from their primary care physician, asked medical questions. Overall tone of "diabetes sucks and I am ashamed that I have it". 
  • The employees who had a loved one with Type 2 and felt the need to take the materials I had brought so they could strategically place them around the house. Overall tone of "I mean well...but I know what's best and leaving these fliers around the house will make my love one instantly take better care of themselves". Ugh...if only they knew it doesn't work that way! 
  • The employees who would skit by laughing and say "I'm not there yet!" What?! Who wants to be "there"? Overall tone: Diabetes was sad. 
I tried to encourage that afternoon. I listened and shook my head when necessary but at the end of the day I felt sad. Sad that there is so much stigma attached with Type 2. So much blame from well meaning people but they just don't get "it". 

We need to stop the blame game. Blaming others isn't going to help anything. It won't stop diabetes. It won't cure diabetes. It just alienates the person with diabetes and makes them feel shameful. We need to lift each other up. We need to encourage and understand that diabetes isn't easy. We need to offer to listen to our friends and family when they vent about how hard it is to take care of diabetes. We need to walk alongside them in their journey with diabetes; not be a know-it-all; holier than thou; judgmental "friend". Diabetes is HARD!! Let's stop the blaming and start the liberating! Let's work together!

Tuesday, May 16, 2017

#DBlogWeek Day 2

The Cost of Diabetes...this is a HOT topic! The state in which I live has a state administered program run through the Department of Health called Children with Medical Handicap which covers any appointment as it relates to diabetes; or other chronic illness. The first year of diagnosis everyone qualifies no matter how much income you bring in. After that, it is income eligible. This health care program will also work as a secondary insurance in the event you already have primary insurance. This has been a saving grace for our family. Imagine the cost of diabetes supplies times two and throw in a son with a bleeding disorder whose medicine costs roughly $1/unit and he is prescribed medicine based on height and weight...right now he takes over 2000 units twice a week; more if needed! Our family would be bankrupt if it weren't for our primary insurance and our state program. 

Unfortunately, our eldest daughter aged out of the program when she turned 21. Now that she is on her own she is learning about the cost of diabetes. She is still on our family primary insurance but at the beginning of each year; when we haven't met the deductible yet and we order insulin, test strips and pump supplies it is outrageous. She has been known to come over and borrow supplies from her sister to help get her through to her next Rx refill. I guess this would be the upside of having two T1D kids...we seem to have supplies. 

But it is a real stress for my daughter. She worries about the cost of insulin and test strips. She wants to take care of herself. (Author note: we would gladly step in and help her pay for her Rx should we need to). But for the moment...take our offer away and it's up to my newly graduated daughter, with student loans to figure out how to buy her life saving insulin and test strips. That is a lot to ask a 22 year old to juggle. It is absolutely ridiculous, in this day and age, that people are having to choose paying for their groceries or their insulin. And don't get me started on the increasing price of insulin! Dr. Banting would die a million times over if he knew how greedy our pharmaceutical companies are now. 

Diabetes is stressful enough in the day to day management...why should insurance add extra stress to our families and loved ones? 

Monday, May 15, 2017

Diabetes and the Unexpected #DBlogWeek Day 1

Diabetes and the unexpected...always! When our now 16 year old daughter was diagnosed in June of 2005 at the age of 4; that was unexpected. When our now 22 year old daughter was diagnosed in June of 2012 just before her 18th birthday; that was unexpected. (Even though we knew a diagnosis was eminent from our TrialNet screening. You can read about that here.) The truth is...who ever expects a diagnosis? Let alone a life changing one for you or your loved ones?

Our family has rallied through each diagnosis! It has brought us closer and given us many wonderful opportunities that we would not have had if diabetes wasn't in our lives. Would I trade those opportunities to not know diabetes...IN A HEART BEAT! However, we've been able to advocate for diabetes awareness; not just locally but nationally. My girls have been able to find their voices to advocate for themselves both at school, at work and to CEO's of pharmaceutical and medical industries. We've been able to mentor many families and let them know they are not alone in their diagnosis. That yes, it sucks, it's life changing but life goes on... and so will they as they learn to navigate the world of diabetes. We have made some spectacular friends in the D community that we would never know if it weren't for our unexpected diagnosis.

No one wakes up expecting a diagnosis of's what you choose to do with that news that makes a difference. You can choose self pity and negativity or you can choose to make the most of your diagnosis. We have chosen to thrive! We choose to empower and encourage; each other, newly diagnosed, those who have been diagnosed for years and strangers. Diabetes isn't always rainbows and unicorns but it's how we choose to react that can take the unexpected and make it exceptional.