Remembering my father this Father's Day

My dad, who was diagnosed with type 1 diabetes as a child, died just before my 5th birthday. He wasn't healthy by the time he was in his late 20's, and when he caught an aggressive staph infection one winter, he simply could not fight it. He was only 30 when he died.

In the years following his death I heard endless comments about how he "could've taken better care of himself, if only he'd tried harder." His family often blamed him for his poor health and problems related to diabetes. They said "he ate sweets", they'd seen him with candy, and they knew that was a bad idea for someone with diabetes... They said he tried so hard to be "normal" that he ended up destroying himself. He knew better, but he refused to be controlled by his disease.

I remember feeling angry at him as a child. Angry that he didn't care enough about my sister and I to take care of himself. Angry that he left my mom alone. Angry that he didn't try harder. Angry that he let diabetes win.

Of course I had no idea what it meant to live with diabetes. I had no idea what it meant to live diabetes with NO glucometer, having NO idea what your blood sugar was, EVER. No idea if you would wake up in the morning, or pass out while driving to work, which he didn't and did, respectively, often.

He had only long acting insulin, and he would inject himself with a huge shot each night, a ballpark guess. If his urine was full of sugar, a little more... if he'd had a severe "reaction" during the day, a little less. That was as good as it got. No meal coverage, no corrections, no numbers, no control... no matter what.

The year my husband was diagnosed with type 1 diabetes I went through a huge range of emotions about my dad. I was stunned by the relentless difficulty of managing D, and we had tools! But even testing, carb counting, accurate meal boluses and fast acting insulin wasn't enough to ensure good results. How was this possible? The variables were endless and the fear was overwhelming.

I started to realize how IMpossible my dad's life must've been. The frustration. The fear. The embarrassment. The misery. How much he must've hated being awakened many mornings with a bottle of juice in his mouth. How scary it must've been to drive. How angry he must've been about the judgement by people who know nothing about his disease. How much he must have longed for a life that wasn't limited and defined by his illness. How sad he must've been to know how little he could do to change it.

While I never would've imagined that my own spouse (or child) would end up with diabetes, I am grateful for what it has taught me. I understand my father, probably more than most who knew him alive ever did. I know that it was a miracle that he survived for more than two decades with type 1 diabetes, without EVER knowing what his blood sugar was. A miracle. I am so glad I know that now. I'm so glad that I understand.

I now have peace about my fathers life, and admiration for how he lived it. I wish he could've been here to see the amazingly normal life my own husband is able to live with diabetes. The wonderful father he is able to be. I wish he could have had that chance himself. And while I know it would break his heart to know that his precious granddaughter lives it too, he would be thrilled to know how much better her life will be, and how far we've come.

Happy Father's Day dad, with love.

An update~ EEG's, MRI's & Diaversaries. What a week.

We had a mostly drama free and successful trip to Houston this week. We stayed right across the street from the hospital, which was great for the 7am test arrivals. Downtown Houston traffic is not something a stressed out mama needs to deal with at 5am! Trust me! We also had to keep Emma up most of the night, so it worked well to drive the H-town the night before.

The start of the EEG was not so good. I told her how painless and easy it would be, but she was still upset when we arrived and was completely hysterical when she had to get in the bed. :( She has serious PTS (post traumatic stress) from previous hospital visits and no matter how hard she tries, she's still scared. Poor kid.

Then the EEG tech was very rough and rubbed her skin raw with a cleansing scrub in every single spot where the leads had to be placed. (all 22 of them!) It was so ridiculous that I almost asked her to stop and LEAVE. Grrrr. Emma was screaming the entire time. But once that was done she calmed down and was able to relax a bit while the leads were glued on. She was able to follow all the test instructions, and even sleep. Thank goodness.
 

 

 We were done pretty early in the day, so (after I spent an hour scrubbing the glue out of her hair) we went to the Galleria and had a great meal at the Cheesecake Factory. Yummy! Emma rode the train and went to candy heaven. Luckily her blood sugar cooperated with us (even ran low) and we were able to let her indulge in lots of sweets which made her super happy. After a swim in the hotel pool she was beyond exhausted and ready for bed.

On day two we had another early start. We arrived to the Clinical Care Center early for the MRI and MRA which was good because once we checked in they would NOT put her to sleep in their facility. Say what? Yes, one look at her medical chart and the anesthesiologist wanted labs drawn, (even though it's only been 2 months), asked millions of questions, and then we were told we'd be going over to the main hospital for the tests. Luckily they were able to get her IV in in record time before we left, so the labs were drawn from that and we were able to walk her over to the main campus.

I was confused at first, but the nurse in the hospital told us that kids who are too "high risk" for the outpatient center get transferred over "just in case." I was both grateful for their caution, and a sad to hear the reason, but everything went well. 

In a strange twist the hospital anesthesiologist was the same doctor who put her to sleep for her kidney biopsy two and half years ago in Dallas... crazy, small world. He is excellent (and unmistakable as he's young, and kinda looks like a tall Tiger Woods with a Barry White Voice, seriously, what are the odds, lol) and was able to sedate her adequately without having to intubate her. Thank goodness. She woke up slowly, drunk and slurry and happy. No blood sugar drama, no crying, no nausea, no problems. "Dr. Woods" may be my new favorite doctor, at least for this week...

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Today they called and said everything looked OK and there were no "significant abnormalities", but she does have a cyst in her brain...   I'm sorry, what? WTH does that mean and how can it not be a significant finding? Our neuro is actually out on maternity leave and the doctor I spoke with didn't say too much about it, except that it was a benign cyst and likely part of her anatomy. I find that a little strange since she had a previous MRI of her brain and no one mentioned a cyst then??? We shall see.

I will have a long talk with our neuro about everything when she returns, but the good news is that there is no obvious damage from AI destruction and no obvious cause of the seizures or memory problems. Now we just wait and hope these problems don't get worse and that the seizures don't return. At nearly $15,000 for this group of tests I'd rather not have to repeat them regularly like so many of the others we do ALL the time. Ouch. Even with pretty good insurance. Ouch!!!

Her 6 year diaversary happened to be yesterday. (June 16th) I spent most of the day feeling grateful. Grateful for the good parts of life that seriously outshine the bad. For her amazing personality. For our ability to take great care of her in spite of these staggering issues. For the fact that she is happy and smart and silly and brave and sweet. For the incredible love and support of our families and friends. For technology and medicine and great doctors and even for the sobering perspective I find each time I walk into a children's hospital. 

In spite of everything, we are blessed and I am grateful.

Seeking Serentiy...

 

Part 1

We all know the prayer. I never used to give it much thought, but it runs through my head a lot these days. I consider myself pretty courageous. I fight hard when I need to, even if I'm terrified, and I'm willing to do whatever it takes to "change the things I can," especially when it pertains to my children.

However, when it comes to accepting the things I cannot change... sigh. Not so much. I'm currently seeking wisdom in this area.

For the past six years I have watched my little girl struggle through one health problem after another. I've nursed her through some enormous challenges. I have stood in stunned horror at the prospect of each new diagnosis. ("are you freaking kidding me? it's enough already!!!!!") I have been fighting like hell to allow her to live as normally as possible. All I want is to make it better. All I want is to fix her.

After hundreds of lab tests over the years and genetic studies and more specialists and more researchers we have pretty much hit a brick wall. It came in the form of a series of emails from the man who knows more about autoimmunity than anyone I know of, Dr. George Eisenbarth. (The doctor we've been consulting and planned to meet this summer in Denver.)

 He says that there is nothing he, or anyone else can do to change what is happening to her. Her regulator T cells (the immune system cells that shut off an attack, or prevent killer T cells from destroying your own cells and tissue) are likely malfunctioning, but the technology and testing to figure out why simply does not exist. There is currently no treatment. He is curious to see what happens to her, and he is sorry, but he cannot help us.

In a nutshell~ There is NOTHING YOU CAN DO TO CHANGE IT. All you can do is treat the problems she has, test her regularly for the problems that are likely to develop and accept that you are doing everything you can. You cannot make it better. YOU CANNOT FIX HER.~

It has taken some time for me to process these conversations. I feel like a piece of my heart has been ripped out of my chest. I think it was the little spot where HOPE lived. 

God grant me the serenity to accept the things I cannot change, because acceptance is not going to come easy for me.

I can't look at her and believe that this as is good as it gets. She already has the complications that most D parents fear may come 20-30-40 years down the road. At age six her health is more complicated than all of my grandparents combined. This is insanity. How can I accept that my perfect little girl is falling apart right before my eyes and no one can stop it? I can't.

There is some good news. She does not have auto-antibodies for Addison's disease. She will be re-tested for them every two years now since the risk is high. Even without Addison's disease now, Dr. E has classified her as having Autoimmune Polyendocrinopathy Syndrome either type 2 or 3. Which is basically a blanket diagnosis for people with multiple autoimmune problems, including more than one endocrine disorder. It can include all types of AI diagnoses, though it does not normally include kidney disease or rheumatology issues (like lupus). Unfortunately the more problems you have, the rarer the combination of problems, and the earlier they start... the worse the prognosis. She is the youngest patient he has seen with this many random AI problems.

We still have that last round of regulator T cell studies to do at Baylor. It's possible that it will reveal the underlying defect, but even then, they have made it clear that it won't make much difference. It cannot be fixed. 

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Part 2

In the days following this correspondence Emma got very sick. Strep was the diagnosis, but the illness was brutal. Hours of vomiting and lows and mini glucagon injections and ketones and fever and misery. I hadn't slept for 45 hours when IT happened. The next episode of stunned horror had arrived...

She was laying there on the couch, watching TV with her brother and I. She had fever, 101.7, but she was doing OK. We had been talking casually when all of the sudden her eyes became vacant and she stopped moving. She was still looking toward me, but I could tell she wasn't "there". Then she started laughing. Laughing? But with wide glassy eyes and no sign of joy. Even though I was in her face trying to get her attention she was completely unresponsive for at least 10 more seconds.

Then she looked at me and I could tell IT was over. Whatever it was. She seemed confused. My son asked me if she was losing her mind. I tried to downplay it as something that "just happens with a fever"... But I was shaken.

I got her ready for bed. Put her in a bath to help lower her temp. Cursed at the fact that she can't take Motrin or Ibuprofen because of her kidneys. Forced more tylenol down her, begged her drink something, anything and laid her in her bed.

She was restless, tossing and turning and whining. Here temp was back up around 102, not terrible. BG holding steady at 150. I went to wash my face and then came back to check on her. When I touched her arm she started to cry and then became still, and IT happened again. Only this time it lasted much longer. She was just laying there staring vacantly at nothing, and "laughing"... like something out of a horror movie. I could tell she was breathing, and she wasn't convulsing, so I ran downstairs to get the phone. When I returned she stopped and laid there with those glazed eyes for several more seconds, and then she was back. This time she was freaked out. She couldn't remember what had happened, but she knew something was wrong. She cried for at least 20 minutes before I got her back to sleep.

I called our (completely useless) pediatrician who said it did not sound like a normal febrile seizure, but not to worry too much. He had never heard of a "laughing seizure," and didn't seem to give it much thought. "Going to the ER wont do you any good if she's laughing, put her in the bath and try to keep her temp down."
Oh gee thanks Dr. useless, sorry to interrupt your sleep with this medical nightmare I'm in. grrrr (BTW, 5 seconds on google will bring hundreds of results on laughing seizures. Who knew... not him, clearly)

I put her back in the tub, and gave her a nice big dose of Motrin. (I will apologize to her kidneys later, but I wasn't gonna screw around with anymore useless tylenol.) Then I put her back in bed, and laid down next to her and cried and prayed and begged God not to let IT happen again. Her fever broke, and IT didn't.

Because she's already being followed by a neurologist I called first thing in the morning. If it was just the fever, I can deal with that, but I need to KNOW that.

The chat with the nurse resulted in an almost instant call back from the neurologist, which did not go as I'd hoped. He said that A) Kids her age don't have febrile seizures and B) febrile seizures don't affect the part of your brain that causes a laughing seizure. That is a rare occurrence and not something to ignore. In his opinion, the fever probably just triggered something that was already wrong.

Insert yet another moment of disbelief...

She's been having some strange behaviors over the past few months. Some scary memory lapses, lots of crying episodes and bouts of hysterical laughter. (Things that are hard to pinpoint as abnormal in a 6-yr old with a gregarious personality) Her teacher and school nurse both told me there were times where they couldn't get her attention, and she was dazed for brief periods of time. The neuro thinks those episodes may be "absent seizures." I was hoping they were just the result of serious fatigue, but she was already scheduled for an MRI because of them.

So we are headed to the Blue Bird Circle at Texas Children's in a few days. The neuro scheduled an EEG for Tuesday night and she will have the MRI on Wednesday morning. The latter will require general anesthesia, which will be the icing on the cake. I don't want to freak yet. I feel mostly numb and guarded and in a bit of denial, as is often my response to more potential bad news about my relentlessly tortured little girl. I'm scared, of course, but this is no time to panic, and we don't really know what to expect.

I found this note from Emma on the kitchen counter this afternoon. That pretty much sums it all up...