My village, My peace

   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.

My village, My peace

   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.

Moving on: Baby Steps

These past few months have been completely, 100% total insanity. I can tell you of the millions of events that happened while we were trying to be a family supporting a person that was dying. Because, as I have learned, life is not extra kind or concerned with the things it continues to innundate you with...regardless of whether or not you are going through a hard time. My Dad had a house fire, and was displaced from his home as things are being repaired. Bryan and I decided to move our family to a smaller home in town. My sister, who is pregnant and who lives in the UK was in the process of moving herself, somewhat unexpectedly. Not to mention, the perpetual sickness that seems to be sticking around. Our flu like symptoms, sinus and bronchial infections. Gabriel, Samuel, and Marin having the chicken pox...Griffin getting pneumonia. And the day that mom died, I woke up from a grief induced snooze to realize I was coming down with something myself...and Dad is just now getting over it. And really, this was just the tip of the iceberg. Complete insanity.

I have been really easily surprised lately. I haven't had much time to spend looking in the mirror as this storm has been brewing around us. But when I happen to pass by, or it is unavoidable as I get out of the shower, I expect to see the outside of me reflect the inside of me. I am confused for a second why my face is not bruised and battered. Why there are not seeping wounds all over my arms and legs. Why my feet and hands are still in tact, when I feel like sometimes they can't be forced to move. Why my chest is not ripped open, and exposing the broken heart that is inside my chest, beating irregularly with little promise that it knows how to keep going. Why I don't look as broken on the outside as I do on the inside.

Because, you see....this is just a part of the journey for us, for my family. This has been the worst time in my life, that I can think of. Nobody else had to experience seeing my mom choke on her own vomit, and look into her scared eyes as she pleaded with the world to please, please allow her one more breath. Nobody had to worry about her psychotic episodes, as she lay dying, unable to drink anything and starving to death. And witness her crying out for someone to help her. There was no one who had to tell her that they didn't know how to make it better. Nobody had to sit, and watch, and wonder if her "time" would come when the two of us were alone. No one had to make the decision to force her to die, and drug her with morphine so the physical task of passing would be as comfortable as possible. Nobody but me and my sister and my Dad. THIS...is mother fuckin real, people. REAL, real. How can you go a lifetime, knowing someone, and then in a matter of a few months, have it taken away? Right now, none of it makes sense...and a lof of the time we end up feeling lost.
There are people in our lives that chose not to be there for my mom.... and people likewise, who have chosen not to support the three of us that remain. And, for those people, I feel a great sadness. First, because I feel like my mom's struggle was worth the time and effort that any healthy person could muster. My mom was special, and she deserved more. But mainly becuase I am certain they missed out. My great friend said tonight, "What good can the good bring, when you don't allow yourself to experience the bad?"

And isn't that one of the most simple truths we have in this thing called life? I mean, yes. It was a long process, and one that was not thrust upon us unexpectedly. But, I am one among many, now, that has watched a person die. And while that is a really daunting and sad experience....I also know that it was not in vain.

When you are forced to be a part of the circle of life... things change. I am no longer living my existence the same way that I was a few months ago. The wise universe has given me the precious experience of watching life come into the world. And now I have to go on, knowing what the end is like as well. But, here is what I have learned. You have to either decide to be angry and bitter...or you decide to live your life in a better, more productive and loving way.

There were many people who were saddened by the time of year that we lost mom. In fact, we have had many people tell us that they can empathize, and how certain holidays are just not the same anymore because of a similar experience. We could have chosen an outlook parallel to that. To be mad and resentful. Made the decision final, that forever more Christmas would suck. Picture ourselves a year from now, holed up inside our dark bedrooms, drinking senselessly as the tears come and the horrible memories of her end come flooding in. But, if there is anything that we have learned from having this awful disease be a part of our daily routines, it is that we must not lie down and give in. We can't live life the way HD would have us live, because that is not living at all. Instead, we have to live our days in SPITE of HD...

So for us, while it was still terribly difficult to know she was leaving, we chose to see the positive in the time she picked to make her way to the next life. The Holidays and December were her absolute favorite time of the year, and so it was easy to understand that of COURSE she was waiting until this special time in Heaven. She didn't want to part ways with the earthly beings she loved so much, and so she stayed as long as she could. But she was also REFUSING not to be in her Heaven for the yearly birthday party that she was finally going to get to see with her own eyes. And, even though this Christmas was incredibly bitter sweet, and chaotic, and insurmountably sad.... Cindy and Dad and I made a promise to mom. We told her that from here on out, we would not dwell on the hurtful things these next holiday seasons, as we continue to live and grow. Instead, beginning next Christmas, we will have a huge, ALL-OUT celebration. Sing her favorite carols, and bake her cookie recipes. Give our friends her cranberry bread like she loved to do. To make it abundantly clear to our children, that Gram always made Christmas incredible. We made a pact that we would keep her favorite time of year sacred, and special, and jubilant.

Maybe it's easier for Cindy and I, because despite all of the craziness we have experienced these last 15 years, we have always known, without a doubt that we were loved. We have a solid foundation to work from. But making that choice is not an easy one. It is easy to check out of your life, and permanantely reside in the hall of despair. To think constantly about all of the hard things we have had to endure. But the truth is...we have to go on. Life has given us wonderful and amazing gifts. Gifts that we have no choice but to be thankful for. Gifts that we will enjoy, in spite of the hardships we still have to face. We have to take those little baby steps that come after times like these. Each day, putting our hearts back together piece by piece as best we can....and also with the knowledge that it will never look or function the same as it did "before." We have to keep moving with the ebb and flow, taking in the good as we learn how to live with our heartache.

This is the gift my mom gave us. And this is the gift we have to implement for ourselves, to teach our children.... Because this line of tragedy continues. It makes up a part of who I am. And it's a part of each one of my children and those who love me. But also because life is never going to just bring the good. We MUST choose the positive, we must. And when the bad presents again to rear it's ugly head, we will be that much more strong and prepared. If we never allow ourselves to be present in the deepest, gloomiest times that come... then we never know how truly beautiful the light is when the darnkess fades.

Mom's obituary

Eva Eulene Robinett, only known as Sis, passed mercifully on December 24th after her long battle with Huntington’s Disease.
Born in the Texas Hill Country on November 16, 1951 to Alton and Imogene Ledbetter, Sis spent her youth learning how to cook beside her mother and delighted in taking lunch to her beloved daddy as he toiled away in their farm fields. She was a model student, became an accomplished seamstress and played basketball. As time passed, she grew into a stunningly beautiful woman.
Forever headstrong and not willing to ever settle for second best, Sis earned her Early Childhood Education degree from Texas Tech in Lubbock and married her soulmate, Randy Robinett in her hometown of Stanton. They moved to Austin shorty after bringing two daughters into the world. She loved giving her time to inspire the young minds she was charged with and devoutly turned out bright and well learned kindergartners year after year. She spent most of her career at Williams Elementary and finished out at Kocurek Elementary. On any given day you could witness her strumming her guitar, serenaded by twenty 5 year olds, or making stone soup for the children in her crockpot. Her classroom was the furthest thing from normal and was furnished with birds and a tarantula. She was a favorite among parents, peers, and most importantly students. She was, without a doubt, a gifted instructor.
But if you could ask her now, she would say that her life didn’t really begin until she became a mother. She was an encouraging and well rounded parent who taught her girls the importance of responsibility but also of living life to the fullest. She marvelled at planning and executing hundreds of camping trips and family vacations, determined to expose her family to the best things America has to offer. All the while, she sacrificed her free time to play the role of chauffeur so that her kids could participate in whatever activity they desired. She had an incredible green thumb and her heart would melt when she came upon a field full of wildflowers. She made sure that summers were never boring!
And although she felt truly blessed to be a mother, there was no comparable joy to becoming a Gram. She had the privilege of watching her daughters produce 7 grandchildren and with each new little life her heart grew that much more. Those tiny humans were her happiness and her hope as she started to decline. In the hardest hours of her terrible struggle, she could still muster up what she had left to reach out to them for some physical touch.
Sis fought her fight with the toughness of a gladiator, the tenacity of a superhuman and the grace of an angel. She always had the strength to keep living life to the best of her ability and her faith never wavered. Sis will no longer be here to give her hugs or reach out to hold our hands but her fascinating story, and her timeless legacy will forever live on in our memories and in our hearts.
A visitation will be held on Monday, December 27th at Manchaca United Methodist Church from 6:30 to 8:30 and a memorial service will be held the following day at 11 a.m. at the same location. The family requests that instead of flowers, donations be made to the Huntington’s Disease Society of America in honor of her courageous life. www.hdsa.org/donations.html

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