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 was...how 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 no...you 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.

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 department...how 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)...in 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.

#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? 

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 anything...it'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.

The Living with Diabetes Assignment

One of my jobs is Camp Director for our local American Diabetes Association. It is a fun and sometimes stressful job but so rewarding! I have the opportunity to meet some amazing, dedicated and passionate people from the camper family side to the volunteer medical side. Last year we were approached by our local University College of Pharmacy to volunteer at camp and also bring some PharmD students that could receive class credit for their participation. It worked brilliantly! The Professors who organized it where fantastic...especially given that they had no idea what to expect. The PharmD students loved helping as well and gained valuable insight about type 1 diabetes and how it affects kids differently. 

This year the Professors offered an advanced diabetes course elective and invited our camp nurses, psychologists and myself to talk about our experiences at camp and in some cases living or caring for people with diabetes. In preparation for the class the students had a Living with Diabetes assignment they had to complete. This entailed living with Type 1 for two days and then Type 2 for two days. The students were required to purchase a glucometer, testing supplies, alcohol swabs and sharps container. They were provided with metformin (in this case candy) and and insulin (in this case saline), syringes and log books. 

For their submersion days they acted as either type live. Counting carbohydrates, testing and logging blood sugars, administering insulin, taking Metformin, they even had to insert and maintain an insulin infusion site and constantly think about diabetes 24/7! 

I was invited  on the day they shared their experiences. All the students were shocked at the constant thought that went into being diabetic. The logging, the counting, the worrying. It opened their eyes to what it must be like. Many of these students already work in a pharmacy and shared they have dealt with diabetic patients and felt more empathy towards them now as they had walked a day in their shoes. They were happy for the understanding of what the burden of diabetes feels like for patients. They also understood the complexity of the disease and how it varies from person to person and why it's not always that easy to be compliant with their care. 

They listened as I shared my frustrations about going into the pharmacy and fighting with insurance and correct coding for billing and I did let with them know that we hate to hear, "do you know how much this insulin costs?!?" every January as we wait for our deductible to be met. It was cool to give them my perspective as a parent on caring for kids with Type 1 diabetes. We talked about camp and the opportunity to see kids age beyond their years because this illness steals their childhood but camp offers them that week of acceptance and to feel normal. 

I believe each student was able to have some understanding and empathy towards those living with diabetes and it will help them be better pharmacists because of the experience. As written in the purpose of the assignment: "the insight you will gain by doing this assignment will be just as valuable, if not more valuable, than any information you will learn out of a textbook or in a lecture."

The next phase is applying to work under the Professors at camp. The applicants undergo an interview process and background check before a position is offered to them. It will be such a hard decision as they were all eager and excited for the chance to volunteer and we can only choose a few of them. As a parent to two type 1 daughters, I can't thank these beloved Professors enough for the experience they have offered these students. They are making a difference in the world! 

Our Pharmacy Team from 2016!