Hi, I'm Melanie, and I have HHT

HHT - Hereditary Hemorrhagic Telangiectasia. It's a disease that's been passed down in my family for generations. All three of my sisters have it. My mom and all but one of her siblings have it. And chances are that my kids all have it. I'm not positive about Carter, but I'm pretty sure about the rest of them. Tanner, my stepson, got lucky because he doesn't have my genes.

HHT causes abnormalities in the blood vessels, usually in the nose and skin, and sometimes in the liver, lungs, and/or brain. Nosebleeds are the most common complaint among HHT sufferers. I've had nosebleeds for as long as I can remember. All of my teachers knew there was a chance that I'd run out of class with my hand cupped over my face. My kids are starting to deal with this now, too. Fortunately, it's really not a big deal.

But as I get older, my bleeding is getting more severe. It's particularly bad when I'm pregnant, due to the increase of blood volume. I've had some bad enough bleeds to make me weak for quite a while. And it can be pretty scary. I coat the inside of my nose with lanolin at least once a day, and I avoid the most innocent scratching in fear of bleeding. These things help, but I bleed often and without warning. Some days I can't get the bleeding to stop and walk around with tissue shoved up my nose. I just traded in a van that had a nice big blood stain on the driver's seat belt. (Sorry about that. I hope the dealership got it out before some poor soul discovered it in their new van, although it looked kind of brownish. Maybe they wouldn't realize it was blood?)

This pregnancy has gifted me with the 2 worst nosebleeds I've ever had. I bled like crazy for the first trimester! And then it almost stopped. Apparently the hormone shift in the second trimester worked in my favor. But as I move into my third trimester, it's starting back up.

Recently, I found a prenatal yoga class, and a good Groupon deal, and started taking yoga again for the first time in years. Yay! I love yoga! The first two classes were awesome - I loooove the instructor. But Thursday night I went for my third class and was sorely disappointed. As soon as I went into my first forward fold, my nose started dripping blood. I cupped my hand under my chin, and grabbed the box of tissue at the front of the class as I ran out the door. I spent some time in the hallway getting it stopped, and even shoved some tissue in my nostril for good measure. Thinking I was safe, I went back in and got into downward dog with the rest of the class. But to my dismay, blood starting seeping through the tissue and I had to run out again. I didn't dare go back inside until the sun salutations were finished. I spent the rest of the class only halfway attempting the positions. Even child's pose puts a lot of pressure on my face. And because of the tissue shoved up my nose, I couldn't get into the breathing properly, which compromised even shavasana at the end, which is my favorite part of the class!

I was embarrassed and ran out the second the class was over. I felt like crying as I drove away. I was definitely feeling sorry for myself. I thought about my grandma, who eventually died from the complications of HHT, and about my aunts and uncle, who have had significant problems due to the disease. They have had such good attitudes about it. And I realized that of all the hands to be dealt in this life, I would rather this than any other. Everyone has struggles, and I don't know if I could handle anything else. This, I can deal with. I can go to the drive-thru at Wendy's with Kleenex in my nose. I can teach my kids how to deal with nosebleeds. I can manage being really weak from loss of blood. Heck, I'm a pro at getting blood out of just about anything (except seatbelts, apparently). Research is being done and new treatments are being discovered. Hopefully this will become less of a burden, especially as my children grow older.

I'm not sure when I'll go back to my next yoga class, and when I do, I'll have to explain my nosebleeds to the instructor. She'll be nice and understanding, just like everyone is when I tell them why I'm gushing blood. And I'll remind myself that I'm grateful that I have a body that, even weeks away from delivering a baby, is healthy enough to do yoga. That I've been able to deliver relatively healthy children - as many as I've wanted. And maybe someday I'll stop being such a whiner.

Frustrations of Motherhood

Like every mother, I'm sure, I have one child who is more difficult than the others. They all have their quirks, and some things I know will be a struggle with particular children. But with my 5-year-old, pretty much everything is a fight. I can't even count on getting out of the car immediately upon arriving somewhere, because I have to coax him out. There's almost always bribery involved, and often I have to resort to threats. Just to get the kid out of the car!

Today was particularly trying. Maybe it was my fault for over scheduling, but I can almost guarantee that the second half of the day would have been the same no matter when we scheduled it. We started the morning with the first day of preschool for my 3yo and 5yo. It was only an hour, to get them used to the school and their teachers. Both kids had a hard time staying in class and letting me leave, but both also came out an hour later happy and excited to go back tomorrow. Yay! We went to McDonalds for lunch with some of their preschool friends, and then had to stop at the grocery store for a few things on our way home. The boys went nuts at the store, and I wanted to strangle them. It was the same super-hyper, not-listening-at-all behavior that they displayed at bedtime last night and that makes me crazy. They play off of each other and ignore me and I can't handle it!

In the afternoon, we headed to the doctor for well-child exams. The kids both needed shots, but it was our first time at a new doctor, so the nurse convinced me to schedule a nurse visit for the shots next week. We wanted their first visit to not be a super traumatic one. Well, that all went out the window when the doctor heard a murmur listening to my 5yo's heart. He said we needed to do an EKG, and I was surprised when the nurse wheeled in a machine a few minutes later. It should be such an easy procedure. But by that point, I had already had to coax him into standing on the scale, and then sitting on the table to have his checkup. He decided that there was no way a nurse was going to put a bunch of stickers on his body. I realize that fear could be a big part of his reaction, but I also know him well enough to know that this is something he would not cooperate with under any circumstance. So I held him down and tried to still him enough to get a good reading, which took a while.

We got through the EKG - my pregnant body was practically dripping sweat from the fight. And then the doc said that we needed to go next door for a chest x-ray. It seemed like such a simple thing. It only takes a minute, right? I knew that we were in for trouble. The x-ray tech had no idea what was coming at him. This tech tried every trick in the book, all involving trying to reason with my child, which I knew was not possible. I finally demanded that he stand where he was supposed to, and even got him to put his hands by his side (20 minutes had already elapsed by this point), but he refused to hold up the barrier to protect his boy parts, and the fight continued. I had to leave the room because of the radiation, and the poor tech took forever to finally get a picture that he said would be acceptable. I apologized profusely as we left, and promised my son that I would make good on my threats. No X-Box or Wii for the rest of the day, due to his disobedience.

Unfortunately, I found that he had hidden a pack of gum in his pocket at the store earlier, and we got to stop at the store on our way home. I got to have that mom moment when you march your child back in to the store, explain what happened, and have the child apologize. Thinking that he was going to earn back his video game privileges, he did indeed apologize. Outside of the store, I hugged him and praised his good choice. And we had a long talk about stealing. And then we went home to carry out the punishment he had earned at the doctor's office.

I got home feeling exhausted and discouraged. My child is willfully disobedient. I don't know what to do about it. I try to be consistent with my expectations, and to follow through on my threats. I try to use positive reinforcement as much as possible before resorting to the negative. But nothing gets through to him. What am I doing wrong?!

The thing about this child is that he is my most loving. He tells me hundreds of times a day that he loves me. He hugs me constantly. He tells me I'm beautiful. He takes time from playing to come over to me and stroke my arm or give me a smile. He is the sweetest thing! Until I want him to do something for me. Anything really. I'm at a loss.

We all have days when we question our ability to parent our children, right? You've been there too? Not that I would wish a day like today on anyone, but I'm hoping that I'm not alone....