SO, where was I?? To continue my last blog, I have been thinking about Alorah so much lately. And feeling dumbfounded at how far she has come. Like I said, she still struggles. It seems like she is the type of person that just thrives when she has a completely full schedule. In fact, her symptoms were the worst when she was about to go into the first grade. Where we lived in Colorado at the time, kindergarten was only half day, and so there was a ton of time where she was home, and really having a hard time. I even took her to a child psychologist who diagnosed her with ODD. Which is an impulse control disorder, and made perfect sense. But as soon as she started school full time, it was almost a night and day difference. It proved to be a huge peace of mind for a long while, until I noticed that as soon as she is out of routine, things get challenging again. Having HD in my family seems so unfair sometimes, when I allow myself a moment of self indulgence. But often I think the most unfair part is not worrying about myself, and what I have to face, but what my children may be facing as well.
This weekend, our family went camping with our "village." If you know Bryan and I, you know that we have a very large extended group of friends that have been in our lives waayyy before we became parents, and who have been along for the ride ever since. We have introduced more babies to the mix, as the years have gone by, and really treasure our deep friendship with one another. I won't lie and tell you that we have all, always had it easy, because that would be silly. For a while, we were all off exploring the world, in different places, doing amazing things. And you can't be friends for over a decade and not have the occasional spat. But, we all eventually found our ways back to one another, and all live within miles of each other. I hope you share in the feeling of knowing what true friends really are. They are people who will drive halfway across the country to come visit you for a week at a time. People who don't really care how your curves have softened over time. People you would trust your kids with in an instant, and without the slightest bit of hesitation. People who know the inside of you, maybe even better than yourself. My true friends are those who I can talk openly with about HD and make them promise to stay around when things get rough. But who will also take me down a notch or two when I am overreacting (who me?? overreacting??) These are people, I know, that would never abandon me or my husband, and who will be there for our precious babies. And it is these people who stuck closely by my side, and encouraged me to keep going and never give up on Alorah. To our kids, these friends are actually more like aunts and uncles, and therefore had been witness to Alorah when she was out of control. Not one of them ever claimed to know the answer, but their promise to help keep me same in searching for answers, was some days, all that kept me going.
I know these stories seem a little splotchy, but I have a point, I promise.
This weekend, as we all came together to just, 'be' for a short time, I couldn't help but feel overwhelmingly blessed. We are so lucky. We are watching our older children learn to love one another, just as we had fantasized about. And get to love on the sweetest little ones, always making sure they know us just a little bit more than all the rest of the people in their lives. We have the gift of watching Mary, one of the last of the single club, fall more and more in love with her fiance, seemingly overnight. But beyond that, I just felt such a strong sense of peace. I'm tearing up about it now, as I write about them. But that's what it is. Peace in my heart. Because these people, my friends, have it all under control. They are going to continue on this roller coaster of a damn ride with me, and for just a moment, I get to worry about my babies a little less. They are going to step in, and be parents, when I lose my ability to do so. Without question. And this is what I want to encourage you to do as well!!!!
For those of us who have HD, and for those of you who are partnering with someone who has it.... you need a village. It actually is important for anyone, who becomes a parent, but with HD in the picture, I tend to see it as a lot more dire. I started out very early on as a mother, believing that I could do it all, on my own, and that I would never need anyone. Let's be honest, it was only a couple of months before I realized THAT was the silliest thing ever. But I know for some of you, it's a bit more difficult. However, we should just see that it is part of our job, being HD positive, to create a future for our kids. Literally. To lay the groundwork for relationships with important people, who they know they can go to for anything. For me, this is so real. The idea of a village, isn't just something nice to say, just a pretty little cliché. I have two daughters who won't have their mother some day. It is important for them to know they have women they can go to for motherly advice. I hope with everything in me, that my boys will feel a strong sense of family when they are in the presence of our village. And I know a decompressing man trip to hunt or fish, will only ever be a question away for them. We MUST have this, for our kids. It is imperative, so that they never feel alone. So that they never wonder who we were, after we have left this earth.
So, this is a challenge for everyone. If you haven't ever opened up a conversation with your village about their role in your children's lives if something happens to you, please do. And for those of you who are in my shoes, and facing HD.... do it now. It takes a lot of work. Time spent with one another isn't always easy to make happen, but I promise you, you will never regret it. I hope it will bring you the same peace, that I am feeling now. It really was the best mother's day gift I could have hoped for!!
To my friends:
People will gather around me when I am sick, and make a fuss for a short while. Others will make it a point to offer support to Bryan and try to do little things to make it easier on him in the short term. Some might disappear all together. But no one will see you in the background, holding everything together by the seams. No one will know you are there, but us!!! And yet, I know you will do it anyway. It's hard to put into words, just exactly how I feel about you guys, exactly how much I love you. Just please know, that I will forever be grateful, that you are my village. And thank you, for bringing me peace.
Did you know:
Psychiatric
Early psychiatric symptoms of Huntington's disease are subtle, varied, and easily overlooked or misinterpreted. Depression is the most common psychiatric symptom of Huntington's and often develops early in the course of the disease. Signs of depression include:
- Hostility/irritability
- Inability to take pleasure in life (anhedonia)
- Lack of energy
- Some people develop manic-depression, or bipolar disorder, during the course of the disease.
A person with Huntington's also may exhibit psychotic behavior:
- Delusions
- Hallucinations
- Inappropriate behavior (e.g., unprovoked aggression)
- Paranoia
In late-onset disease (after age 50), the patient may suffer depression rather than experience sudden anger or irritability, and their memory, reasoning, and problem-solving skills may remain sharp.
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