Why Try Harder?

I KNOW that I have to be an advocate for my child. I KNOW it’s a constant battle. But seriously?

The last few weeks or even months have been very difficult. We’ve been slapped with one thing after another. And the thing that kept rattling around in my head was that Samantha got so sick that she ended up in the ICU, then was told she had diabetes, then was sent home with a slew of prespcriptions for insulin and a huge Glucagon pen. In case she lost consciousness or had a seizure.

Flashback to me walking out of the Neonatal ICU with my son, having just been told he had a serious heart defect and an extremely rare syndrome. “Don’t let him cry hard,” the nurse said. “Why?” I asked. “Well, he’ll start shunting blood across his heart, he won’t get enough oxygen, and then he’ll pass out.”

WTH? This is the way you dismiss people from an ICU? “Here ya go, here’s a stack of prescriptions – watch out, your kid may fall over as if dead, suddenly, out of the blue.”

Do we look insane? Because we are now. All 3 of my kids have decided to check into the local children’s ICU. What lottery did we win? My youngest, Annebelle, got RSV at 2 months old. We dodged the dire predictions when we walked out with her.

So anyway, back to Sam. I was further amazed when we were told to schedule an appointment with the endocrinologist in 3 months. TICK, TICK, TICK. Here I am with my offspring/time bomb once again. On my own. Trying to figure it out. Hoping she doesn’t fall over.

So I put her in a clinical trial. I want to open every possible door and check behind it. Someone will be there to help us.

The nurse and doctor at the trial have been very helpful. And we get to see them frequently. We get to ask questions. The trial doctor thought Samantha was having thyroid problems and told me what tests to ask my primary care doctor for. I pushed our regular doctor to get Synthroid started. Samantha feels a thousand times better. The trial doctor said Sam had protein in her urine. I asked our regular doctor to double-check it. It was there again.

I was at my breaking point, wondering where the endocrinologist was in all this, so I blew a gasket on a nurse in the office. I was told I have all the tools I need to manage Sam’s diabetes. I erupted. How could that be? I said that if I hadn’t put her in a clinical trial, she wouldn’t even be getting medical attention. Is that the way diabetes works? We got to see the endocrinologist.

Everything’s a fight. I KNOW IT. I’m my daughter’s best advocate. SHUT UP.

This week, Sam made the varsity softball team at her high school – as a 9th grader!

Because we tried so hard.

You’re a good mama. :slight_smile: I know where you are coming from; I’ve had to fight analogous battles for my child in the past, and it is very, very tiring. But you are doing the right thing. Keep your chin up.

Wow, sounds like you have your hands full and then some. Do you have any family support? Or friend support? When was the last time you had an entire day of rest and relaxation just for you?
It is very important for you to take care of you…so you can go into this battle with a fresh and clear mind like the woman warrior that you are.
You are just as important as your children, and they need you to be well in mind, body and soul. Please find a way to recharge your batteries! (((((((HUGZZZZ))))))))))

Congrats on making the softball team!!! What you are going through sucks! Are you sure there isn’t anything better in Louisville? Are you with a pediatric endo? I think your endo needs a lesson from ours. While we are at the hospital we are visited by the dietician, nurse practitioner and diabetes educators for our endo’s practice on three seperate visits. We discharge on Friday morning and we are scheduled to come to the endo’s office on Monday for our first education class. Before we check out of the hospital we are given a sheet of paper with the emergency numbers for the nurses we just met and told to call for ANY reason. We call on the first night (good thing we did because we would have given Reece 12 units of insulin before bed instead of a 1/2 dose). When we get to the class on Monday, the doctor isn’t there, but let me tell you these nurses that are on the education team know there stuff! We spend two hours there with information overload. The next Monday we have our first visit with the endo. Slightly disappointed when it is the nurse practitioner again and not the actual doctor, but as it turns out she was plenty qualified to see us that day. She mentions defend 2 at that visit. We are scheduled to come back in 3 months, but because we join the study we get oodles of appts. Before the next appt we have yet another class only four weeks after the first about food (keep in mind these classes only have two other families, so there is plenty of question opportunity). We live in Raleigh and our endo is Dr. William Lagarde with Wake Med and they provide unbelieveable support 24 hours aday. I never feel alone in this process and you should either!

I have just started this journey with my young son. I know how you feel. It is tough right now. It sounds like I was given more information before being shoved out of the ICU with my son, but I still feel there must be more…more education to be given. This disease is so complex and is all of a sudden pushed off on you as the parent. Hang in there. We are all here to support one another. Congratulations to Sam making the team!!!

So sorry you are having to go through everthing that is being thrown at you. Some would say there’s a reason. I don’t know about that but it does sound as though your kids are so lucky to have you as their advocates. BTW, who makes a varsity team as a freshman? Wow! Sam is a special kid.

Awwww, I wish I could give you a big huge hug!!! My heart broke reading this. I agree with everything you said. It sounds like your family has had such terrible struggles. And for some crazy reason the Dr’s & medical professionals are not serving you well, they seem to be failing you. I am so sorry.
I admire your strength and tenacity! This is such a tough disease. I’ve had Type 1 for 30 yrs (as a child) and what I have discovered through all the years is that diabetes and frustration go hand in hand. Bummer, huh? Ughhh…! So we do the best we can and learn to fight and also to adapt in ways that make us healthier (mentally) than a lot of others out there… We are stronger…
You sound like a TERRIFIC mom and all of your children are going to benefit from your strong will.
God Bless you.

Samsmom…it does sound like you have had your more than fair share of medical crap with your kids. What if they would have gotten a mom what didn’t care as much as you do? What if they would have been born to a family who didn’t take care of them the best they could, and something horrible did happen to them? No mother, wants that for anyone’s child. You have raised, are raising beautiful children, because you do care…and what more can a person ask but that. It sounds to me as if now it is time for YOU to get some care. You’ve been through hell, and it’s affecting you…maybe you need some TLC — a mental and emotional break…we can’t do it all by ourselves. I had one child that was very sick when he was born, and to this day, he is 23 now, I worry ore about his health and welfare than my own…because he was “my sick baby” This strappin young man who is healthy and more fit than anyone I know- ----- I worry about him. I had to step back and take a mental and emotional break to save my sanity and see the wonderful job I had done raising healthy kids. Maybe you need to give yourself the permission to do just the same. YOU ARE A GREAT MOM!

Everyone, thanks for the responses. I was feeling overwhelmed & sick of it all, and I just had to write it out.