What the HHT?

A Voice for the HHT Community

We Are Never Alone

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By Desiree Clark

desiree and vince clark

Desiree and her husband Vince.

June was HHT awareness month. The zeal to help those who may not know they have the disease was amazing. I read every letter and blog; “liked” the sentiments and banners on social media; and cheered for those running and walking for the cause. But there are other facets of what awareness brings that aren’t always talked about. As uncomfortable as it is to describe the bleeding, surgeries and headaches that come with this, it is even more uncomfortable to talk about the emotional side.

The first “H” in this acronym represents Hereditary. When we dream of having children we think about passing on the traits we like about ourselves – our eyes, our sense of humor, even dimples. We pray the “bad” traits aren’t passed on and, consciously or unconsciously, we choose a mate who may balance out those traits. My children are pretty smart cookies so I often joke about how I “bred” well. My husband just rolls his eyes and smiles. But since the HHT diagnosis of my children, it’s not so funny anymore.

I remember being in the geneticist’s office when she explained that HHT does not skip generations. The words, “one or both of you have it” stung me right in the heart. I could tell by my husband’s look he was thinking the same thing, “We GAVE this to our kids.”

Clark Family

Desiree’s side of the family on a vacation in St. Lucia.

On a logical level we knew it wasn’t our fault, but emotionally the guilt overwhelmed us. I imagine everyone who has a child with challenges feels a little bit like this, but I had never heard anyone talk about it.

We rode home from that visit in silence, but our thoughts were loud and frantic in our heads: “It can’t be me. I’ve never had a nosebleed…but wait grandma had a brain aneurysm! It can’t be me I’m as healthy as a horse, I’ve never even had a cold!” Then after the silent blame game the guilt switches gears to martyrdom where we want to take the blame because that’s what good marital partners do.

It turns out HHT comes from my husband’s side. I’d like to be able to confess I was relieved to find out, but there is no relief when family is suffering. I love my husband very much and the thought of him being in danger scared the hell out of me.

So how are we supposed to feel? I reacted by going in to “business mode,” scheduling tests, marking medical charts and printing flyers, but my husband’s reaction was quite different under pressure. He became sullen and reserved, contemplating each step of our lives up until this point. Life just looks different after news like this.

I was never a worrier, but now I treat any ache or pain from my children as if it’s hospital time. A pulled muscle in the chest or back area throws me in to a tizzy! I used to be a “walk it off” kind of mom, but now I watch my family for any little inconsistency in their breathing or demeanor. I also go back and forth from worry to shame as I think about how “easy” we’ve had it with HHT compared to others.

Clark Family Side

The Clark side of the family on vaca in Dallas.

Then it hits me, STOP! Haven’t all my tragedies in this life been covered with knowledge, compassion and guidance? Why do I forget the reason I am so involved is because I have witnessed true life miracles! I have had prayers answered and I still have my family. I have a new HHT family to whom I can offer support and hope and whom offer it back.

Our emotions are vast. It’s hard to know how to handle HHT, but I believe last month’s awareness push brought us together. For some reason we feel better and stronger when we know we are not alone. Truly we are never alone.

p.s. I hope my transparency doesn’t make anyone uncomfortable. Sometimes, we just need to be honest. I encourage you to comment about some of your feelings going through this. Would love to start a discussion as it will be good to work through this. Blessings to you!

 

One thought on “We Are Never Alone

  1. Thank you for your article. My middle daughter’s genetic testing came back to day and it is HHT. I don’t know why this really affected me today because she has had nosebleeds and pavms coiled recently. It just seemed like a nail in the coffin today! I am just so sad, mad, confused etc… Now her sisters need to be tested and my husband and I. All the headaches, asthma could it be HHT? So many emotions!

    Like

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