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 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 this...you 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 community...you 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. 

#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! 

Celebrating Friendship

Today I woke up to a post on Facebook from a very special friend. You know those posts on Facebook that say "Today you are celebrating xx years of friendship with insert name of person here"? 

My special friend is my diabetes mentor, Lora. While Facebook says today is our 8th year of friendship, this June we will celebrate 12 years of actual friendship. Back in 2005 when our then 4 year old daughter was diagnosed with Type 1 diabetes our family was in a state of shock. I was given a stack of papers from a social worker at our local Children's hospital with instructions to read them and fill out if necessary. In my desire to do and learn as much as I could, I did. 

One of those papers was a flier advertising a mentor program. Perfect! Someone who could talk me through this crazy new life of ours. I filled out the paperwork and within a week or two my phone rings. It was another mom, Lora, who also had a daughter the same age as mine who had Type 1 diabetes too. 

I know we must have talked for a while (we both are talkers!). But there are a few things that still stick out in my mind as to what she shared. 

1. A1C results = do NOT sweat

2. Cheetos 

3. Local support group

For those of you in the non-diabetes world an A1C is a test result that measures the average blood sugar over the past three months. AKA: the parent report card. Many parents have great anxiety over this number. Because of Lora, I do not. I didn't even understand what an A1C was 12 years ago when I first talked to her but I remember her telling me not to stress out about it. It is a number. A snapshot. It's information that will help your endocrinologist determine insulin adjustments. It is NOT a report card on how well you take care of your child with diabetes. As a parent you do the best you can in stepping in as a pseudo pancreas! I didn't even know what a pancreas was until diabetes! However, I am so thankful for her words. She set the tone of how I handle this information and in turn how I serve as a mentor to others. 

 

Cheetos. Yes, Cheetos. Let me explain. For those with diabetes we must count carbohydrates in order to determine how much insulin to give for food. You can do this several ways. You can measure with a food scale or measuring cups. You can purchase single serve food or you can hand count your food item. If you decided to hand count your food item imagine counting out 21 Cheetos. Have you seen Cheetos?! They come in all different lengths and sizes. What constitutes 21 Cheetos?! OMG! And if you get to the crumbs at the bottom of a Cheetos bag...what to do!?! I didn't truly understand what Lora was talking about until I bought a bag of Cheetos and decided snack bags were the way to go. Seriously...you'll never look at Cheetos the same way again! 

I was lucky enough that Lora happened to organize a monthly support group for kids and their families dealing with diabetes. She came up with the content, speakers and locations each month and it was life changing. Walking into the group the first time was intimidating. They were talking about things that I didn't understand but throughout the months and years of meetings they were a source of knowledge for when our daughter was ready to try something new in her diabetes care. 

Over the years Lora and I worked on many committees together and have watched our girls grow up. Then in 2012 when our then almost 18 year old daughter was diagnosed there she was again, calling to check on me.  While I don't get to see her or talk to her as much as I would like we are able to pick up where we left off. 

Lora, thank you for your encouragement, support and understanding all these years. Your friendship means the world to me and my family. I hope that each of you who read this post have that someone you can remember back to and thank for their support.

A New Year's Declaration

I'm not big on New Year's Resolutions. I figure if there is something I need or want to change then I'll just go ahead and do it. I don't need a new year to start something new. What I do like to do is a New Year's Declaration or Theme, if you will. I think about the opportunities that might present themselves to us in the year to come and declare it. For example; in 2012 I declared it "The Year of Travel". We had several opportunities to travel both separately and as a family to different conferences for each chronic illness and even vacationed for the first time as a family of 5 which included a straight drive from Ohio to Florida and one big suitcase full of diabetes and hemophilia supplies (never mind that we haven't taken a vacation since)!

For 2017 we have declared it "The Year of Prayer". We will have significant changes this year. Joe will be losing his job at a company he has worked nearly 20 years at this coming Spring. Our eldest will be marrying her High School sweetheart this fall and beginning a new chapter in her life while we both learn how to transition from little girl to a married grown up daughter. Our middle daughter will be driving, exerting her independence and trying to learn responsibility even more as she manages her diabetes while driving, gasp...a stick shift!! My non-profit job is never guaranteed as I see budget cuts, more demands on procuring funds and hiring freezes...it's an uncertain time. And who knows what curves our chronic illnesses will throw our way. While some of these things can and will be scary (for the record: we are SUPER EXCITED about the wedding!! We love or future son-in-law!) I am excited to see what journey these changes will bring. All of the above is beyond our control. We know whats happening and we can't change it but what we can do is pray.

We can pray for peace and guidance.

We can worry less.

Don't misunderstand...We are not a do nothing and hope for the best type of family. We are active prayers. This means that we will be actively searching for opportunities. Our eyes and ears will be open for ALL possibilities.  We will pound pavement. We will use our connections. We will pray.

We are friends will all walks of life. Believers and non believers. But no matter if you are the praying type or the send good vibes type we will gladly accept any prayers or positive thoughts you are willing to share.

What I love to do...

One of the things I have always loved to do is write. Even when I was younger I would keep journals. I was a writer for our community paper in junior high and would share album reviews in the paper at college. As life moves along and I became busy with marriage, kids and chronic illness I didn't even think about writing. But as I found myself at home dealing with a newborn in 2008 with a bleeding disorder I found some solace in reading others blogs. 

I found my voice. 

I began writing for the Blue Heel Society and sharing my perspective and thoughts about diabetes (collectively with 3 fabulous people in the diabetes community). I was also able to share my story when our eldest was diagnosed. I then began writing for Captain Jackson's Hemophilia Adventures and sharing my perspective and thoughts about bleeding disorders. I found great stress relief in pounding on my keyboard. My mind was full of random thoughts and feelings that needed to get out and writing helped me do that. I also wanted to make sure that others in both communities never felt alone. But, life happens. The kids got older. I started working day shifts. I just didn't have time to write. 

I missed it. 

Mindlessly scrolling through Facebook the other day I saw a calendar that Jerry Seinfeld used to help motivate him to write daily. I LOVED it. I thought it would be a great challenge for me. Kinda the "put it on the calendar like an appointment and you're more apt to do it" philosophy. So in the final hours of 1-1-17 I'm submitting my first blog entry of the year. Here's to a successful writing year! 

Thankful.

It only seems fitting that I post about being thankful as Thanksgiving is just a few days away. I am thankful for many things and shockingly I'm thankful for diabetes and hemophilia. I know...it sounds crazy but let me clarify. I would hand both away in a heartbeat but since I can't I choose to be thankful for the closeness and opportunities it has given our family.

I'm thankful for a spouse who is my teammate. We tackle challenges together. We build each other up and encourage one another. Showing a united front helps our kids see that we strong and ready for whatever comes our way.We are by no means the Cleaver family but we have a closeness that goes beyond. We rally and support each other when one is down or struggling. We cheer each other when milestones or accomplishments are achieved. We fight for us. We are passionate in what we do; no matter the cause.

I'm thankful that my kids are aware of their health and how they feel. The girls know when blood sugars aren't in range and Jackson knows when he is having a bleed. Being able to act quickly in both cases is key to either chronic illness.

I'm thankful for the amazing places we have been able to attend from conferences, to advocating in DC and even ring in the opening bell for NASDAQ (will blog about that on another post). We have met some incredibly inspiring people, families and a community of like minded people. To be able to find someone who goes through the same things your kids go through or can understand why you look like death warmed over after a rough night of blood sugar checks or why you are angry when insurance doesn't want to cover medicine or dictates what they want you to use.

They've been there.

They've done that.

It's easy to wallow in the "why us" and sometimes I do but I choose to accept what's been given to us and make the most of it. So if you are reading this chances are we are family. No, not family by blood necessarily but family by community and for you I am thankful. May your Thanksgiving be in range and bleed free!

Introductions

Hi! Many of you know us already. We are the Loving family. We are a family of 5. Our daughters have Type 1 diabetes and our son has severe hemophilia. I'm not new to blogging. Some of you have read my blog entries from the Blue Heel Society or Captain Jackson's Hemophilia Adventure. I've now decided to work on just one blog where I can talk about both chronic conditions in one forum. Some posts may be about diabetes, some about bleeding disorders and in some cases, both. No matter how you look at it we are living, dealing and thriving daily despite the hand we've been dealt. These are our stories...the Loving CHRONICles.

the Loving family at NYC!