On March 1, 2015, my 10 year old son was diagnosed with Type 1 Diabetes. This diagnosis has rocked our world. I want to share with others what we are going through as we go through it.

Monday, July 20, 2015

Taking on Disneyland with Type 1 Diabetes

Planning a trip to Disneyland can be a daunting task for any family, but for a family with a child with special needs, it can be almost terrifying. My 10-year-old son, Nathan, was diagnosed with Type 1 Diabetes on March 1, 2015. Without going into the not so fun details of his diagnosis, I will say that it has been a pretty big game changer in our home. After the initial shock and hospital stay, we were all set to go to his first endocrinologist follow up appointment. Along with the myriad of health questions, I had a big one that had been plaguing my mind. What about Disneyland?

We had booked our summer family vacation back in December when the kids started mentioning the mouse more and more often. This is a tradition of ours to visit the parks every other year. This year was the year, so we figured we would book early at the Disneyland Hotel for four nights and five days. This would give us three full days in the parks with a 3-day park-hopper. It was going to be perfect. Now, everything was changing. I felt guilty for worrying about our trip when all of my attention should have been on my son, but this trip was for him too. Thankfully, our doctor gave us the go ahead and even provided a note for us to be able to “bring our own food and not wait in line”.

OK, now I realize that his note seems like we were asking a lot, but the truth is that with T1D, Nathan must check his blood anywhere from four to twelve times a day. This means that if we are standing in the hour-long line for Space Mountain, midway through we may be checking Nathan’s blood. If low, he would then need to eat, drink, take glucose, etc., or even get out of line. This is no small task in a tight, crowded situation, so the note, we thought, would be amazing.

Before driving the eight hours to Anaheim from Sacramento, I first contacted the Disneyland Hotel who assured me there was a refrigerator in our room to house our extra insulin. They also informed me that I needed to go directly to City Hall on Main Street once we enter the park. It is at City Hall where all accommodations are made for people with special needs. In their Disney way, even on the phone, they made us feel welcome and understood.

Once at the park, we did as we were instructed. At City Hall, the cast member informed us that they could indeed accommodate Nathan’s needs. We could not skip the lines altogether, but what we could do was the next best thing. We could receive return times for the rides, allowing us to “wait in line, but in a more flexible environment”. Initially, I was confused, but the cast member cleared it all up. Strategically placed around the park, there were roughly five green umbrellas. These umbrellas housed cast members who could check wait times for rides and load one return time at a time onto our park tickets. This meant that if we wanted to ride Matterhorn at noon and the wait was 45 minutes, the cast member would give us a 12:45 return time on our ticket. At 12:45, we would head over to Matterhorn where we could enter the line and get on the ride within roughly five minutes. We could only get one return time at a time, so we had to plan accordingly, but this made for a much more relaxing experience.

On our third day entering the parks, I began to feel like perhaps we didn’t need the return times after all. Everything was going smoothly, and we were able to go on all of the rides we wanted. Then it proved to be worth every second of finding the umbrellas. I went to get a return time for a ride with my son and husband. While I stood in line to speak to the cast member, Nathan looked up and me and said, “Mom, can you hold my backpack?” Before I could answer, he dropped it on the ground and stumbled to my husband. Immediately, we went to check his blood glucose level. It had dropped to 61, and Nathan needed glucose tabs. As we found him shade to sit in, he slowly perked up, but needed some water as well. My husband went to the nearest vendor to purchase water. The cast member noticed my husband’s “We’re Celebrating” button and asked about it. My husband explained that we were celebrating being able to travel with our son who was recently diagnosed with T1D. He then explained our son’s current condition. Long story short, the cast member “made magic” for us. He handed my husband three bottles of water for our son to have. No charge.


Nathan recovered quickly and we were able to conclude our vacation without more incidents. We came home with fantastic memories, and we are eternally grateful for Disneyland’s accommodations. Without the return times, I fear what could have happened. More importantly, because of Disney’s exceptional customer service, my family was able to have an amazing vacation, and my son was able to enjoy each step of the way without worry or concern.

Monday, March 16, 2015

Resilience

This weekend we met with the specialist for the first time since the hospitalization. It was actually quite good. The doctor moved Nate from a syringe to the pen, which is fantastic. Nate is becoming more and more independent with his diabetes and it's making me feel so good with this all.

His blood sugar has been in the "zone" all week, with the exception of one day. Saturday, at lunch, his blood sugar dipped low (69). He was pretty out of it while we waited for a table at Red Robin. I asked the hostess for some cheese out of instinct. She looked at me like I was crazy but got me a "bullet" of SHREDDED CHEESE. Was he supposed to drink it? Well, he ate it and still felt like crap, so I went to the bar for some real soda. This time, the bartender looked at me like I was on drugs when I asked for a small cup of soda. I tried to explain to him that my son has diabetes and needs sugar. He got it for me and still looked at me like I was crazy. Don't get me wrong, I get it. Most people don't understand diabetes. Hell, I didn't three weeks ago, but if someone came up to me and said, "Can I get some soda for my diabetic kid?" my answer would automatically be yes. There would be no question at all. I swear, customer service has really gone down the tubes.

Anyway, other than his level dropping a little, we had a great weekend and he's doing so well. Honestly, I have the most resilient kid in the world and he impresses me every day with how he just rolls with the punches. If I could choose characteristics for my kid, I wouldn't change a thing. He is amazing and I am constantly in awe of him.

I love you, Buddy.

Wednesday, March 11, 2015

Looking Good

We are 11 days in and my son is blowing my mind! He administers his own shots now. He helps plan his meals. He counts his carbs (and is right!) at school. He's happy.

If a month ago, you asked me how I thought my son would handle this scenario, I don't think I would have been as optimistic. He impresses me so much. He has shown maturity that I don't think most 10 years old could do.

I'm so proud of him.

On top of all this, his blood sugars number has been in the normal range all day. I don't want to get ahead of myself, and I know this could be the start of the "honeymoon period" I keep reading about, but I welcome it with open arms.

Saturday, we meet with the specialist. I'm hoping Nate graduates to the pen. It will make things so much easier. Anyway, that's it for now. Things are good.

Monday, March 9, 2015

Taking Care of the Caregiver

Even I have limits. WHAT?! That's an impossibility. I am a teacher, a mother, a wife. and more. I don't have time to not be at 100%. This is not right.

I had a cold before Nate's diagnosis and was put on antibiotics to help out, but with all of the stress, they didn't do much. When I came back to work on Thursday, I was given 90 Independent Reading Projects (10 pages each), 30 tests, and 90 Research Papers. With Midterms this week, I knew I needed to get all of this graded so I could come back this week and make my midterms exams for Thursday and Friday.

My body said, No. Friday, we went and established Nate's Medical Care Plan at school. It was good and easy, but it's scary to think about him back at school. When I got home, I graded all of my projects and tests. I thought I was on a roll.

Saturday, I took care of a health exam and exchanging some clothes, but by noon, I had a fever of 100.7. Down I went. I crawled into bed and was in and out of sleep until 8am Sunday. Apparently I needed rest. I was still sick Sunday, but I stayed in bed and grade research papers for 7 hours until they were all done.

This morning, I went  back to work with a seriously stuffed nose, and my skin hurt. I can't afford to call in sick again. I took 4 days off last week. I need to save days. Anyway, I made it through the day and managed to make two midterm exams. Now, I am sitting on my couch and can barely breathe through my nose. I'm pretty stinking miserable.

I get it. I can't take care of my son if I don't take care of myself. I'm trying. I'm the only one working and I need to keep it together for all of us. I need to get healthy, but I don't know how to do it, so in the meantime I will continue to take care of my family.

UPDATE: Nate went back to school today and is now giving himself his own shots. I am SOOOOOOO PROUD of him. He has really stepped up and shown us how amazing he can be. I'm starting to feel OK with all of this, but I know the minute I get too comfortable, it can turn upside down. So, I plan on standing at attention. Saturday is our first appointment with the specialists. I'm both excited and nervous to learn even more information about this disease.

That's it for tonight.

Friday, March 6, 2015

Keeping the Faith through the Confusion

I'll be the first person to admit that I don't go to church every Sunday, but at the same time I am still a firm believer. I am grateful for the things and people in my life, and believe there is a reason for everything.

All that being said, my daughter asked me questions tonight that I really couldn't answer. She pointed out that she doesn't understand why God would do this to Nate. Honestly, neither do I. I know I will never know the answer to that question, but we have been through so much already in the last 16 years. With each trial, my husband and I just keep saying that it's a test and we are made stronger through each one. But the number of tests has grown to be a bit much. Between my husband going to war, his kidneys almost failing and needing to be rebuilt, Nate needing surgery in his groin, then a year later needing both feet rebuilt, Mike's PTSD surfacing and causing a major career change for him, and countless others, this seems to be larger than the rest and not quite fair. We have struggled and survived more than most.

I don't want to sound ungrateful, but it's getting harder to keep the faith. I feel like we can't catch a break. I try being the best person that I can with hopes that good things will come. This just isn't fair.

Today, we met with the school to make Nate's medical care plan. It was nice to know there are nurses who will be able to help him at lunch. It's terrifying to pass his safety and health off everyday, but I have to believe he'll be ok. Yet again, I need to have faith.

It's interesting though. Everyone we've spoken with has commented on how well Mike and I are doing and how on top of it we are. I can't imagine it being any other way than it is right now with us being prepared. As two controlling and organized people, it's the only way I can hold it together. Breaking down will help nothing. I can hold that off for when I'm alone. I have to be strong for my children. They're my priority.

I'm rambling, but tonight is a low. We're six days in, and it sucks. It sucks and isn't fair that my 10 year old boy is having to deal with this. It sucks that he's going to get four shots a day for the rest of his life. His life will never be carefree again because everything will need to be planned. As angry as my daughter is...I am too. I wish there was something I could do. It's not right. It's not fair.

Thursday, March 5, 2015

My Daughter is Angry

My 12 year old daughter isn't taking this news well at all. When we first learned of Nate's diabetes (on Sunday), we were caught up in a whirlwind of movement. After hours of being in the hospital, my mother-in-law brought Amber to see Nate in the ER, and then later that night to the PICU downtown. Each time, Amber asked if she could stay with us to which we answered, No. There simply wasn't room for three of us to stay the night in a room with one twin bed. On top of that, we really wanted to shield her from the PICU. It was such a depressing and scary place. She may be brilliant and extremely gifted, but she's still only 12. Being around all of that depression is hardly good for an adult, let alone a 12 year old. She was not happy when we sent her home with her grandparents, but we truly wanted to do the right thing.

Monday night, we had the same experience. After going to school all day, she called us and told us how worried she was about Nate. I tried to calm her down, and Mike wanted her to stay home so she wouldn't be overwhelmed by all of it, but ultimately, she came to the PICU again. This time, she pointed out three chairs in the room. "See, I can stay." She didn't think about sleeping, she just wanted to stay with us and her brother. Again, we didn't let her because it was the right thing to do. Going to school and maintaining some semblance of normal was what she needed.

Tuesday afternoon, we came home and were here when she got home from school. She was elated to see her brother and us, but then immediately shut us out. She left the house to play with her friends, and when she got home, she hid in her room. "I don't want to talk about it," was all she would say. I've always known that my daughter compartmentalizes things and doesn't like dealing with her emotions. We even saw someone for this for a bit. Now was no different. If anything, it's worse.

Last night, it all came to a head. We went to dinner at Chili's with the in-laws. When we got home, she refused to talk to us. After prodding a bit, she announced, "I don't care that Nathan has diabetes. I'm tired of talking about it all the time. I don't want to deal with this." There was more said, but I don't think it's important to share every intimate detail of that conversation. At the end of it, she finally revealed that she felt left out while he was in the hospital. She wanted to be with us while we "learned" about his diabetes. Instead, we left her out and didn't include her in a family process.

I hadn't thought of it in that way. I know this disease is changing life for the family. We are all affected by this. I thought I was protecting her, but instead, we hurt her by not including her. I still think we made the right decision by not allowing her to stay at the hospital with us for three days. I won't apologize for it, but I have to admit to feeling bad about it. I love my children - equally. I truly do. Right now, my son is requiring more attention than anyone else in my world, but she needs attention too. At 12 years old, her world is very egocentric. I need to remember that.

To try to help her, I called her school today and spoke with her Assistant Principal. He's notifying her teachers about this new development. He's also having a counselor call her in to check on her. My biggest fear is that she will lose sight of her education and start acting out because of this huge change. I told her about it when I got home from work. She told me that if her counselor calls her in, she's "disowning" me. I told her the truth - it's going to happen. She hasn't disowned me yet. i

Five days in and adjustments are being made. I get that she's angry. She doesn't want this to be happening. Neither do I. she doesn't think it's fair that Nate is going through this. Neither do I. She doesn't like these new routines. Neither do I. If I could change any of this, I would, but I can't. I, too, need to find peace with this.

The entire family is being affected by Type 1 Diabetes in different ways. There's no way to know how we're going to be tomorrow, but today I'm going to bed knowing I've only cried a little bit, and we haven't fought at all. It's a start. It's going to be a long road, but we are going to make it through...together.

Wednesday, March 4, 2015

"Your son has diabetes"

The morning of Sunday, March 1, 2015, my son, Nathan, wouldn't stop vomiting. I had spent all night getting up repeatedly, helping him clean up vomit. He said he had a headache, but didn't have a fever. After each incident, he asked for more water, which he couldn't keep down. When we got up that morning, I told my husband I was taking Nate to the ER. I was worried he would be dehydrated.

9:30 - We arrived at the ER and checked in. Within 30 minutes, he was throwing up in the waiting room.

10:30 - We were moved to our own room. The doctor told us it was probably a migraine, but he wanted to do some routine tests.

12:00 - The doctor came back to us in the waiting room. He informed us that Nate's sugars were very high, and followed that statement with, "He has diabetes." His Blood Sugar was 383.

At this point, those three words felt like someone had kicked me in the stomach. Thankfully, my mom was with us, and her husband has diabetes (type 2). She immediately started asking questions while I left the room to call my husband. I couldn't help myself, but the way I initially told Mike (hubby) was via text. I didn't know what to do. I told him "he has diabetes. You need to come down here." At the time, he was at home with our daughter. The shock came on rather slowly. I knew I needed to keep it together for Nate, but at the same time I wanted to break down and cry.

15:45 - At this point, I was in the ambulance with Nate being transported to the Pediatric ICU 40 minutes away. Looking back it was a good amount of time, but at that moment, I had no idea how much time had passed. I was in a fog, just trying to calm my son who was being poked and prodded left and right. He had an IV hooked up to saline and insulin. He was extremely dehydrated. And he was told he couldn't eat or drink. All he kept asking for was food and water. He hadn't eaten since the night before and that was all gone after hours of vomiting.

When we arrived at the hospital, I was practically running behind the paramedics as they very quickly transported him to the 6th floor PICU. Nate was in good spirits (he's amazing), but I was falling apart. Every time a new person - nurse, doctor, my husband, anyone - came into the room, I cried. Why was this happening to us? Was this my fault? Am I being punished? He's so innocent. He doesn't deserve this. I couldn't stop questioning what was happening. His Blood Sugar was 404.

16:30 - I got my first food for the day. The nurse kicked me out of the room and told me that if I didn't get something to eat, I'd end up in the ER too and that wouldn't help Nathan. Alone, I found the cafeteria and ate with tears streaming down my face. Why do I get to eat while he's being told he can't eat until tomorrow.

Finally, my husband arrived at the hospital. While I was with Nate, Mike was getting our house, animals, and daughter taken care of. Thank God our parents live near us. They really stepped up and helped us immensely. I'm not sure what we would have done without them nearby.

18:30 - We were finally settled in and being told that Nate was going to be taken care of. A whole team of people were going to talk to us the next day and "educate" us on diabetes. In the meantime, we needed to get rest.

REST! How was I going to rest with my baby hooked up to machines and tubes? He would cry out wanting food and drink. I wanted to give him anything he asked for, and I couldn't. So, how do I rest? On top of that, Mike and I were told that if we were both staying the night, we would either share a twin pull out or one of us would have to sleep in the waiting room. This was our decision...
It was a tight squeeze, but we made it.

Monday morning, we woke to find his sugars were in the 200s. The doctors took him off the insulin drip and disconnected him from all the machines. We were ready to start learning. First, came the diabetes educators. For three hours, we went over what diabetes is, the difference between types 1 and 2, how to treat diabetes, and how our lives were going to change. When she left, we ate lunch and waited for step 2.

While we waited, we learned how to count the number of units of insulin Nate needed. We watched him get his first insulin injection in his stomach and we learned how to check our own blood sugars. I NEVER thought I'd ever have to do any of this. Preparing to prick my own finger, I was scared. I had no idea how my boy was going to get through this first step, but he did. We all did.

After lunch the nutritionist/dietitian came. For an hour we learned about counting carbohydrates to determine the amount of insulin Nate would get at each meal. Planning our meals is going to be a HUGE change. We are used to eating when hungry and grazing throughout the day. Now, every meal, every snack, every drink, will be intentional and planned.

After the nutritionist, I got to give Nathan his second shot. The day before I would have passed out from needles. Now, I'm an expert at drawing insulin from a vial, getting the air bubbles out of the syringe, and administering a shot in my son's stomach. It's really surreal.

Later in the day, the team continued. We saw case managers, social workers, and finally the endocrinologists. Each time, a new person came, I cried a little less. The care at Sutter was UNBELIEVABLY AMAZING! Every single person showed nothing but care and concern.

All the while, Nathan showed incredible strength. He was so brave and asked such wise questions. I have never been more proud.


By the night time, we were able to smile and laugh and relax. We were gaining a little bit of ground in the world of control.


Tuesday afternoon, we were discharged and sent home. Now we get to start a whole new normal. One that requires more steps than I can fathom. With every answer, comes another question.

Feeding Nate is scary. Giving him shots is scary. I don't want to hurt him, but I have to trust myself. He can't go back to school without a medical health plan and 504 in place. So Friday, we get to meet with people from his school and make a plan. They need to know what to do if something goes wrong. That idea scares me. If I'm nervous about taking care of him, how do I relinquish that control to someone else every day at lunch? I don't have a choice.

So now, my son's life and our family is forever changed. There's no turning back. Mike says our new family motto is "Keep Moving Forward" from Meet the Robinsons. We can't dwell on the past, so we need to embrace our new normal and evolve. It's scary as all Hell, but I have faith we will be ok. But just in case, say a little prayer for us and wish us luck.