Marley

From her mom, Melissa:

How our story began…

The week before Super Bowl 2014, Michael had the flu. Super Bowl morning we woke up to a sick Marley. We chalked it up to her catching Michael’s flu. When you have a 3 and 4 year old that share a room, toys and germs, sharing a cold or the flu is of no surprise. Marley was just like any other young sick child; she would have bouts of energy that alternated with bouts of exhaustion. Her appetite was small and she was just not herself. As a stay at home mom I noticed the little things that were different. The way she wouldn’t fight when her little brother took her stuffed animal, the multiple short naps, the extra cuddles and clinginess. Separately these things don’t mean much, especially when you think the flu has hit. Added all together….

On Thursday morning we went to story time at the library like we did every other Thursday. Only this time she wasn’t excitedly listening or trying to see the pictures. She wasn’t dancing and singing along to the songs. We spent most of the time between the water fountain and the bathroom. When you have a sick 4 year old and they say “I need to potty” you stop what you’re doing and go because well, 4 year olds. That night she had taken yet another nap before dinner. When she did wake up she managed to get down a small bowl of chicken noodle soup. But as we cuddled on the couch, she felt wrong in my arms. I could feel the weight loss. Matt and I made the decision that it would be the last night of it. If she woke up the same, I would take her into the doctor because we didn’t want to wait all weekend for a Monday appointment. At 5:30am I jolted off the couch to see Marley lean off the loveseat and vomit. That alone wouldn’t have scared me…I am a mom, I deal with vomit. What rattled me was that everything was discernable. The gummy bear vitamins she had Thursday morning, the hot dog for lunch and the chicken noodle soup for dinner were all on my living room floor. I called the emergency number for our pediatrician and he said to meet him at the office at 7am.

When the time came I didn’t even dress Marley in warmer clothes. I grabbed her in her favorite Ariel summer nightgown and a blanket and took her out into the Alaska winter. Not the smartest choice but that mother’s gut instinct said to go. So I went. What I thought was Marley drifting in and out of sleep was really her drifting in and out of consciousness. When we got inside the doctor was waiting at the door and said that he needed a urine sample first. Marley was saying that she needed to go now so without thinking I pulled down her panties and told her to potty. My hand was covered but we managed to get some in the cup. Before I could even get my hands washed, the nurse was pulling him into the hall. I knew it was bad. When he came back in the room it hit me. It was like one of those movie moments when everything replays in your head and it instantly all clicks together. I looked at him and said, “It’s not diabetes.” He looked at her and said that we needed to get to the hospital. Now. I don’t even remember driving there, just watching her in the rearview mirror.

When we got to admitting they started asking questions. Did I have my insurance card? Could they see my id? I realized I had nothing. My purse was at home. They told me to take a seat and they would call the doctor because a request for tests hadn’t shown up yet. I tried to explain that she was sick and we were told not to wait. As they started to argue, Marley vomited all over the admittance desk. That got us a wheel chair and an escort to what is one of the worst places in the world, the Pediatric ICU.

The first set of doors you get to at the Children’s Hospital are the visiting doors. They check your name and give you an id bracelet and a security card to give you access to the floor. Sounds great, let’s go. The second set of doors…that’s ICU. For kids. Seriously sick kids. That’s when realization hit that this was worse than I thought. When those doors opened there was a doctor and 4 nurses waiting. If anything is going to make you panic as a parent, that would be it. Knowing that they were standing there waiting for you because you child is that sick. We were taken into a bay where everyone moved with hushed whispers as the severity of the situation set in and I slowly started to fall apart. The doctor started writing her name and others on the giant whiteboard and started speaking to me in a language that was absolutely foreign. One nurse tried to lift Marley off my lap in the wheelchair and I screamed. This was the only thing that woke Marley. They explained that they needed to start and IV and draw blood and it would be better if she was on the bed. So I let them take her. I let them take my baby. Someone, and I have no idea who, pushed my wheelchair into the hall while they did the IV. Marley made not one sound. The sound of crying and screaming came from me. The doctor came out of the room, squatted in front of me and said “You have 3 minutes. Get it out now cause she needs you in there and you will be in there calm and ready to go” and she walked back in. I fell to my knees and asked for God to switch us spots. I needed him to do whatever he needed to make this okay. To right this wrong because this can’t be my life. I can remember the exact moment my heart broke.

After I walked back in that room, my life changed. I wasn’t just her mom. I was Marley’s advocate, her support, her warrior, her voice and officially her pancreas. It was a rough couple of hours. Matt and Michael brought me clothes and supplies and when Michael freaked out seeing his sissy, Matt had to take him home. The stress was too much, on all of us. I had two scared kids that night and I couldn’t comfort either of them. I couldn’t make it better. My heart broke for the second time.
Around 5pm the pediatric endocrinologist came in to talk with me about the next steps. He asked why I brought her in. I told him that it had already been a few days and we didn’t want to wait until Monday to see the doctor. We thought it was the flu since her brother just gotten over it. But this felt different. She felt different. He said that it was a good thing we brought her in because she would not have made it through the weekend. My heart broke for the third time that night.

Our new reality…

At 8:02am on February 7th, 2014 we were checked into the PICU of Providence Children’s Hospital in Anchorage, Alaska. Within minutes I was told that my 4 year old had a blood glucose of 945 and she was in Diabetic Ketoacidosis.

As parents of a child with type 1 diabetes, we often ask ourselves “why did I wait so long?” The guilt is real. It’s overwhelming and it’s crushing. There is a lot of blame, a lot of what if’s. But honestly, it is what it is. You live, you learn and you move on. You have no other choice. No alternative. I am Marley’s warrior, her advocate, her cheerleader, her voice, and her pancreas. Do I love my new life? No.
But I do love my Marley.