NillaSwirl

2007-03-21T13:34:00.000-07:00

The days seem to be running into the next. I am with Swan and her babies most of the time. Sometimes her husband will get out if work early.

DahTu has been coming up lately . . . at least a couple times a week. This helps tremendously. She seems to be able to get Swan to communicate. They always had a need for each other. Even when they were bickering . . . they always “made up” quickly. After all, they’re only ten and a half months apart. I used to call them my “twins”.

TuDah was up for the week as it was Spring Vacation. This was excellent for Swan. TuDah will be sixteen on the 28th of April. She has quite a bit on her plate right now . . . So much to handle . . .
So much to sort out in her young mind.

At the moment . . . all seems well.

2007-03-09T07:23:00.000-07:00

I have been spending the majority of my time with Swan and her babies. I’m there during the days while her husband is working.

I have noticed, to my dismay, that Swan is in a world of her own these days. She sits there for hours . . . just staring at the floor. I try and interact with her but she doesn’t respond.

The doctors keep trying different medications and nothing seems to work. I’m not surprised. I’ve seen it all before. It just seems to be happening more rapidly this time around. At the rate the illness is progressing, I’m sure now that my daughters have Infantile Huntington’s. They’ve probably had it from their teens on and, I just didn’t see it. Or is it that . . . I didn’t want to see it.

DaTuh is not far behind. She struggles daily and she always looks like she’s panicking. I rarely see her relax. She’s always up and pacing.

I cry a lot these days. Sometimes, it’s the only way I can go to sleep at night. Maybe I’m trying to wash away some of the pain so I can be ready for the next day. It’s through the grace of God the Almighty I that keep going for, I know it is He who replenishes my strength!

The Verde Valley

2007-02-12T02:53:00.000-07:00

I have moved back to the Valley and it feels so good to be home. It's wonderful being around the girls and the grandones again. I've missed them so ...

Swan is not doing so well. Her mental condition has deteriorated greatly. The doctors are continuing to try different medications to ease her suffering but there's not going to be too much more they can do for her; and I know this. Still, I can see the light back in her eyes since I have come home. I spend the days with her and the children while her husbands works. When he comes home, he cooks - cleans up from dinner - and helps Swan with the kids. He's such a good man and, I'm very proud of him.

DaTuh isn't far behind Swan in her illness. She visits Swan a couple times a week and they are good for each other.

It's hard to look at my babies and see them struggle with Huntingtons. The fear in their eyes every time they regress haunts me as I close my eyes to sleep at night. I'm powerless to help them and, for a mother, this is so devastating!

Still, I look at them in awe as they continue their struggle with Huntington's Disease ... and I am filled with pride as they show a strength beyond belief.

Christmas

2006-12-27T20:19:00.000-07:00

I spent the Holiday with my children and their babies. It was wonderful.

J-ker, DahTuh and P.B. came to Swans and visited. Felt so good to be with all of them again.

P.B., J-ker and Swan went to karaoke with Boo and I. They sang their hearts out. I was so proud. I glanced at Swan a couple of times and saw that "empty" gaze in her eyes; (quite common for the illness) but she soon connected and gained her composure.

All is well ... and I am contented and blessed ...

DaTuh

2006-11-09T18:51:00.000-07:00

I went to Cottonwood this past weekend . . . DaTuh came to see me. It felt so good to hold my oldest child in my arms. Words just cannot express what I felt.

She cut and darkened her hair. She looked beautiful.

We went to karaoke. She sang beautifully, as always. My heart felt lighter.

My Swan and I hung out at her home. I enjoyed her, my grandones, and my wonderful son-in- law. I didn’t want to leave. In April or May, we should be able to go home to Cottonwood. I ache for that. Swan and I have a wonderful closeness. Closer than we have ever been. I thank the Dear Lord for that. My son-in-law is awesome! What a man my daughter has chosen! He has so much on his plate right now . . . and he handles every bit of it. I wish his Mama could see him now. She would be so very proud. I know I am . . .

2006-10-22T09:35:00.000-07:00

I haven’t heard from my DaTuh. My youngest, P.B. talked with me last night and told me that DaTuh is holding up but is realizing that her mental capabilities are fading fast. I know she’s scared. How I wish, I could reach out to her. If only for a brief moment on the phone . . . just to hear her voice.

I didn’t want this for my children. I wanted them to have full, happy lives. I wanted them to be able to experience so much more than what their short lives are offering. Dear Lord, please help me endure this pain. Please, keep me strong . . .

I spoke with Swan this morning, briefly. She seemed busy with her children so, I didn’t keep her long. Her attention span is also limited. I knew she was trying to concentrate on her babies so, I let her go before I wanted to . . . but, I spoke with her . . . told her I loved her . . . and in my heart and mind, embraced her tenderly . . .

I find myself wishing I could turn back the hands of time, to when they were all young, healthy and happy. I would break that time clock . . . forever keeping my babies safe from harm . . .

Wanda

2006-10-18T18:53:00.000-07:00

A couple nights ago my sister of my heart, Wanda contacted me. I thought I had lost her forever.

Thank you Lord. You have been so gracious and loving . . .

2006-10-10T09:37:00.000-07:00

Friday, I will be going to Cottonwood to spend time with Swan and the babies. She called me last night and we talked for a while. I could feel the anticipation in her. How I have missed them all.

I haven’t heard from DaTuh. I toss and turn at night now. I am not getting enough rest when I sleep. I have become moody and melancholy. I know I must snap out of this. I feel I have lost her already . . . and she’s still here. I fight the urge to call her. I know I must respect her wishes.

My granddaughter TuDah, seems much better when I speak with her. I have been so worried about her. Tho things are still the same with her (I’m sure) . . . she appears to be handling it much better. She has much to deal with at her young age. She takes care of her brother as well. She looks after him, and keeps him talking. He goes to her now when he is sad. I’m so proud of this beautiful young woman.

J-ker is still busying herself with helping both DaTuh and Swan. I haven’t been able to speak with her much. She seems tired. I am so grateful for this special daughter. She loves her sisters with all she has . . . She always did. It takes me back to a time when they were younger . . . When my two older daughters were fighting over her attention, J-ker would run to me and say, “Aunt Mom . . . they’re fighting over me again!” I would smile and say, “See how much we love you baby? Leave them alone for a bit and they’ll work it out.” She would then focus her
attentions on P.B. for a time. I miss those days . . .

Concentrating on Her Children

2006-09-27T11:32:00.000-07:00

Swan and her family will be moving into their new home in Rimrock
this weekend. I’m happy for them. Since they have come back home,
they’re been through a lot. The sister’s fighting ... the emotional out
breaks. Both families have had a hard time of it.

DaTuh has decided to withdraw and keep to herself and her immediate
family. I had seen this happen with her Father’s cousins. For years
after the onset of Huntington’s, they had become hermits ... until their
death. I guess this is quite common in Huntington’s patients. They can
seem only to handle their defined little world set before them. I’m
frightened. I so wanted to make memories. I never dreamed this would
be the path she wanted to take. My son-in-law told my youngest that
DaTuh should be concentrating on her children at this point in time. I
agree. As hard as it is for me, she should give all that she is able to those
children . . . my grand babies . . . for they will have to look to a future
without her . . .

I have memories. Memories of her birth, her whole life . . . up to this
point. My DaTuh, my firstborn . . .

When somethin is wrong with my baby ...

2006-09-16T23:56:00.000-07:00

I have tried several times to call and talk to Datuh. She won’t talk to me. In her mind, everyone has abandoned her; when in fact ... she has pushed us all away.

At this point, there is nothing I can do ... but wait. Wait for her to call, miss me, want me.

It’s so very hard because there is no reasoning with her at this point. She is always right and refuses to see it any other way.

I have also been depressed and could not even bring myself to write in this journal. I must keep going. I must keep writing. Not just for myself ... but for all who are experiencing the horror of this terrible illness. They need to know that their feelings are real, and need to be expressed.

Soon, I’ll be taking a trip to Cottonwood to see Swan, J-ker and the grandchildren. I will try to stop by and see Datuh. Just to tell her that I love her ... and miss her ... with all my heart.

2006-09-06T11:42:00.000-07:00

I keep in touch with Tudah and Swan regularly. Tudah had asked her mother if she was mad at grandma too ... Datuh simply said, “Ya know, I just don’t care anymore.” I try to not take it personally because this is the way Huntington’s patients are. They do reach a point where they just don’t care anymore.

Swan is still devastated and very hurt. I know she loves her sister but she’s struggling with the harsh facts of reality as well. They will be moving into their new house at the end of this month. We will visit Cottonwood at that point. I will stop in and see Datuh, as well.

I need to visit Havasu as well, to check on PB. I spoke with her yesterday, and all seems well there.

I haven’t heard from my J’ker. I hear she has started her own business and she regularly checks in on Datuh and Swan. When I visit Cottonwood, I need to see her and those grand babies. I miss them so much.

I miss Cottonwood. The mountain breezes, the beautiful red rocks of Sedona. The very smell of the air. How I wish I could go back home. Soon ...

The Parting

2006-08-24T09:54:00.000-07:00

It’s so strange how the same illness can affect both girls so differently. One has decided to accept her fate and take the medications prescribed to enhance her quality time she has left with her family ... the other is in total denial.

For some reason, the thought of an anti-psychotic drug has Datuh in a state of alarm. She says she’s not crazy and doesn’t need it. If she were thinking clearly, she would realize that Huntington’s does exactly that. It robs you of your mental abilities.

In this case, I would have hoped that my son in law would encourage her to take the needed medications however, he is also in denial.

Swan and Datuh have parted ... and I know deep in my heart that they will never again have the relationship they grew together with. My heart is breaking, seeing my family torn apart like this. My teenage granddaughter in despair; my grandson, lost in his X Box games to escape the reality of his now distraught family life.

Huntington’s has devastated my life for so long. I now watch in horror as it continues to take the rest of my family and make them strangers.

For those of us who have to stand by and watch ... and try to keep the children and husbands from falling apart ... we are tortured souls. We will try and help to strengthen each other.

My tears will continue to fall ... my heart will continue to break ... but I WILL keep going. I will survive my children and pray to the good Lord for the strength to help their families continue in life.

My Visit

2006-08-20T17:29:00.000-07:00

It was wonderful to embrace my family once again!

Datuh was more interactional this time. She went four wheeling. She karaoked. It was a good change to see.

Swan, J, PB, Boo and I went out to karaoke.

My grandones tired me out and I loved every bit of it!

Boo and I talked a lot. He is so supportive. I have never had this in a man. I would lay in his arms at the end of the day and we would recap the events. This weekend was wonderful...and I am anticipating the next...

Cottonwood

2006-08-14T21:23:00.000-07:00

On the 17th, we will go to Cottonwood to spend the weekend with the girls. I’m
very excited as I have missed them terribly; especially since I didn’t spend much
time with Swan before I had to move.

I spoke with DaTuh, my (oldest) today and she seemed expectant.

I haven’t asked her about her sister. I want to see how things are for myself. I
am hopeful that everything is going well ...

The Phone Call

2006-08-04T10:31:00.000-07:00

My daughter, DaTuh, called yesterday. I asked her if anything was wrong and
she no ... she just needed to hear my voice. She sounded despondent. How I
ache to hold her ... and tell her everything will be alright.

We talked for about an hour. As the time passed, she became more and more
relaxed. I could feel her tension release. I was glad.

My granddaughter and I spoke this morning. She said her mom told her we talked. Tudah said, “Gramma; I’m glad when you and mom talk. You can tell the difference in her. She’s happier.”

My heart was glad.

Next weekend, we will go to Cottonwood. I’m excited and prepared for it...

The Email

2006-07-27T18:24:00.000-07:00

I received an email today from my oldest granddaughter, Tudah. She told me her mother had been trying to get hold of me. She said her mama was sitting there one night and said, "I miss my Mother. Where's the phone". I called her and we talked for a bit. She said she was fine and wanted to be sure that we were alright. I assured her that everything was fine and, I'd be up there to spend a weekend with her soon. It seemed to pacify her. It didn't pacify me, however. I was praying that she didn't hear the trembling in my voice as I choked down the tears.

It's hard being away from them. It's hard to keep my life going as well. I can't let my life fall apart. I MUST continue. I CAN be in two places at once. I'm a Mother...and I've done it for years.

You see, I've learned that it's not wrong to continue living. The years of guilt that I use to feel when I dealt with their father is gone. I HAVE to continue with my own life. We all have to.

I still fight my urges to give up and run home to them; but I push those urges to the side. They're not children. They're adult women with husbands and children of their own. I MUST NOT INTERFERE. I have the faith and confidence in my son-in-laws. The girls chose well. When the time comes, my son's will ask for my help...and I will be right there with them...and for them.

For any of you who are following this journal; this is a tough one. Guilt...anger...fear...and protectiveness will bog you down. No matter how strong you think you are...you must seek counseling. No one can handle this alone.

Talking to someone...seeking advise is empowering to one's soul. Don't deny yourself reinforcement. EMBRACE it! You'll need it in the days to come...

Playing Games

2006-07-22T10:31:00.000-07:00

I called to check on the girls last night and, they were playing dice. The game is called Zonk, and played with six dice. It took me back to a time when we all got together and played games. We enjoyed the family time so much. They would come over or call and invite us over...just about every weekend. We did everything together back then. There was scary movie night (and my son-in-laws so enjoyed hiding around the corners and jumping out at me on break time) , Dominos night, Trivia night, etc. and how I miss it all!

Holidays were awesome! The girls would cook, I would cook...and we would all meet together at one of their homes to enjoy the festivities, and the loud squealing children. Lord, how I miss it!

Datu seems to be coming out of her insecurities a bit more, with Swan home. I was hoping that would happen. My J spends a lot of her evenings after work with her sisters. My special baby...given to me by God. She has been looking after Datu and helping as much as she can...and she has so much to handle as it is...with her own life. She is so strong...and makes me so proud.

Soon, I will make the trip up North to enjoy them all...for one brief weekend, I will take in as much as I can...to last me to my next visit.

Dear Heavenly Father...thank you for watching over my family...

Together Again

2006-07-18T23:12:00.000-07:00

July 18, 2006

I have moved to Salome, AZ. I am now three hours away from my daughters. Not very far yet...it feels a galaxy away.

Swan and the babies have arrived home...and I went to see them last week. To hold them all again was such a sweet delight. How I have missed them. I will make a trip up north at least once a month to be with my children...and...God willing...maybe even more.

My youngest called me tonight. She had taken a trip back east to visit family and frineds. She called to let me know she was home and, give me some heart warming salutations from those we love and left behind.

She will be moving down south about an hour away from me, as her man's job has brought them here. It appears we both will be making regular visits up north.

I can't deny that the thought of at least one of my children being close to me is exciting. I anticipate a lot of visiting when she gets here.

Huntington's continues to ravish my babies...but we are now together again...and will reinforce each other as the days go by.

Thank you Dear God...for bringing us together again....

Swan

2006-07-03T11:04:00.000-07:00

On Friday...the 7th of July...my Swan comes home. I will go up and spend the weekend with my family; for the first time in a long time. All four...together again.

On Friday...the 7th of July...my heavy heart rejoices. Thank you my God...

Swan

2006-06-12T12:25:00.000-07:00

Swan house went up for sale! She is coming home!

I'm trying hard not to think that this might be the key to bring back some life into my oldest; after all...this is Huntington's we're dealing with. Still, the girls never have done well with seperation. All four have been together since their birth.

Yet, I get excited at the thought of us all going out to the karaoke clubs like we used to do. My oldest won't even go out anymore because of the jerks and ticks from Huntington's Desease. She's afraid people will stare...and believe it, they do. She does have the inner strength to ignore it...but she's in a weakened state. Maybe her sister can help bring her out of it.

Swan hasn't let me know the extent of her progression with the illness. Very soon, I shall see for myself. Huntington's is different with each person.

Soon, we will all be together again; and our strengths combined.

Hurry home baby. There is much love waiting for you all; you have been greatly missed.

The Sims Game

2006-05-17T07:55:00.000-07:00

It's been a while since I've written in my blog. She seems to be more at peace these days. She has gotten into playing the Sims game, on her computer.

This puts her in another frame of mind. Takes her out of reality, and puts her into her own. In this world...she has control. I'm pleased because, it keeps her mind working...she's constantly thinking. This is good.

I am not going to be able to go see my Swan as planned. She's been on my mind lately. How I miss her, and those babies.

If only I could afford to buy an RV...so that I can travel back and forth between the two of the girls; it would makes things much easier. Life has never been easy for us tho. That's why we're so strong

April 28th

2006-04-25T08:58:00.000-07:00

My oldest Granddaughter turns 15 soon. Such a beauty, she is.

I remember the day she was born. Her mama had a rough time delivering her. We were all so scared. She was exhausted, yet she kept on working as hard as she could to give birth to her baby.

My granddaughter was born screaming and kicking...and when they took her to get her weight and vitals...she raised up in a crawl position...locked her arms and legs...and wailed loudly in disapproval. The nurses were shocked...then started to laugh and looked at us thru the window shaking their heads in disbelief.

I smiled and cried...viewing that beautiful little hothead...knowing she was mine.

Tudah...she has made my life. Grandpa and I would take her to the Library and read to her...she would go for walks with Grandpa...she, the continuation of my baby...

I visit Tudah and her brother Ditta regularly. Ditta always comes and hugs his Gramma and gives me those special kisses on the cheek. He's quite the little man at 11. He's very protective of his sister too.

I have been so blessed in my family. Thank you Lord...

Mother's Ring

2006-04-18T08:13:00.000-07:00

My 53rd birthday is Friday. They all put in together on the most beautiful Mother's Ring I have ever seen! The gems are exquisite, the arrangement so perfectly done. The setting is unusual...and dainty...not like most Mother's Rings are done.

There are four stones in the setting...3 represent my birth children...and the one set so beautifully in between...is of my sister's birth child...but she is mine, in every other way. She was raised right along side of my three. She's called me Aunt Mom for years...now, to my delight...she calls me Mom.

This is a special Mother's ring...for it represents everything I hold dear. Everything I have lived for. My children have always given me the strength to continue...to push on when I thought I had nothing left to give...I will cherish this gift as long as I live; for I will ever be reminded of their love, beauty, courage and endurance thru their difficult lives.

Thank you my babies...

They Don't Hear Me...

2006-04-13T11:03:00.000-07:00

He lives in an assisted living facility. He's been there for the past 6, or 7 years...since our divorce.

I hated myself for a long time, for leaving. Our marriage wasn't a happy one. For 27 years, I was miserable. Physical abuse, mental anguish; I used to think he hated me. So many times he left me and the babies...only to come back and start all over again...each time he came back was much harder...on me and the girls.

His selfishness...his wants...intensified as Huntington's progressed. So did the power in his fists.

His demands carry over on our daughters. Their stress level is so high. Constantly calling them. Demanding that his material needs be satisfied. They're at his becon call...and I can't stop it...because they feel guilty.

They feel guilty because he's sick...because he's their father...because, one day...not too far off, they will be in the same condition.

NO daughters...you will NOT be in the same condition. None of you have ever been selfish...none of you could leave your babies at a whim...none of you are capable of cruelty...Huntington's will effect you differently!

THEY DO NOT HEAR ME...................

My Baby

2006-04-07T08:10:00.000-07:00

I talked with my youngest Wednesday. She started seeing a counselor. She asked me not to tell her sisters. I guess she doesn't want to worry them. She told me how she had been feeling and, how she seemed to be struggling in life these days. Her loss of concentration, her ability to focus.

My heart froze. I choked back panic as I told her that I will be here...whenever she needs me. I have tried not to think of her having the illness as well.

I asked her if she had intentions of being genetically tested for the illness...she said, "Mommy...I can't handle the outcome if it's positive right now". Dear Lord, I so understand that.

My daughters are more courageous than I. I observe them all and they seem to empower my spirit. They fill me with such pride and adoration!

My babies...how beautiful...how faith inspiring...how precious! I love you...

2006-04-05T07:14:00.000-07:00

We all gathered for her 33rd birthday. She was all smiles. I was contented and relieved to see her participate with such a positive spirit. She was emulating such beauty. Her soul seemed to feed upon the essence of love surrounding her.

Swan called. How she is sadly missed. She wants to be here with us. We need her here. She is such a very important part of us. All we can do is pray...and wait for her return. Swan...we love you...

As the days turn into weeks, and augment into months...that will mature into years...I praise my God; for He has blessed me...in knowing my children and giving them the strength to endure...

April 3rd

2006-03-28T08:14:00.000-07:00

Her birthday is coming. She will be 33 years old. I remember holding her in my arms for the first time, gently kissing her tiny face. What a precious gift I had been given. I vowed to love and protect her for the rest of her life.

I will call my Swan today. I need to hear her voice. I know she will be brave and tell me she's alright...but I know she's not. She and her sister are at about the same level with this illness. Come home soon Swan...how we miss your smile...your cheerful spirit...

The girls have been keeping in touch lately. I feel the anticipation in my oldest. She's waiting...longing for her sister. We all are...

Coming Home

2006-03-21T12:22:00.000-07:00

My Swan is coming home! We're all so excited. Lord, how we have missed her...and those babies.

The house will be going on the market soon.

I can hear the longing for home in her voice, each time I speak with her. She's impatient.
She will be empowered again...her strength will renew under the support of her family.

Oh, to hold her in my arms and feel her presence. To see them all together again, in this crucial time in our life...will be my fortitude...

GOD is good!

It's Been a While...

2006-03-09T13:13:00.000-07:00

I haven't written in my blog for a while. Depression is setting in as, again I watch Huntington's take it's toll on yet another family member. I'm in a panic; as I sit by helplessly. Huntington's effects ALL family members. Those who live with the victim are greatly stressed...Still, I know that it is impairative that I keep going with this journal. It's good therapy...and the thought of possibly helping another soul thru this terrible illness is very important to me.

Last Saturday...my daughter came to spend the day with me. Her eyes all swollen from her hard earned tears...she curled up in my bed and slept. As I watched her...I saw my little girl...my first born...as a child, who I have protected, nurtured and loved with my very being.

In this stage of Huntington's...there is much confusion. Reality comes and goes. Fear and repulsion of the illness set in. Support and understanding are needed...and it's imperative to make sure the caregivier is also supported.

She said: "Mommy, I'd rather have cancer...anything but this...I'm going to become a vegetable,
and lose all my motor functions...my very ability to think for myself"

Yes baby...I know; and I will be there by your side...to the bitter end...

My Swan

2006-01-11T11:23:00.000-07:00

I have been worried the past couple of days since I
found out that "Swan" quit taking her medications.
She gained weight, and it apparently threw her into
a depression. The medication is known to make you
gain weight.

She still worries about appearances. That's very good...
for soon, she will not even care. Neither of them will.
They won't really care about anything. That's how it happened
with their father; but I didn't understand back then...I
suspected and, at times would voice my opinion and fear
that he may be exhibiting signs of the dreaded Huntington's...
his family however, kept assuring me that I was wrong...
I was told, years ago...that the gene skipped siblings...
his mother's sister had it, so she didn't. My husband was
safe...we could have children...

years ago - when there was very little known about
Huntington's Chorea...

They are all so very beautiful. All three. Each having
their own personalities. All so very different...
yet the same...my precious progenies

Glorious Day!

2005-12-28T15:17:00.000-07:00

Such a wonderful day today...she's smiling. What a gorgeous face; when she
smiles the whole room seems to glow, and bask in her emotion! I savor those
precious smiles of hers. They're soooo contagious.

Towards the end of January, we will be going out to visit my other daughter.
We're all so excited. The anticipation is sometimes overwhelming.

We will all be together again, for a while...making more memories...

I have been blessed in my children, and theirs...

Such a wonderful day today...she's smiling!

Christmas was not the same this year...

2005-12-26T09:07:00.000-07:00

She was trying desperately to fight the depression. She baked a delicious ham,
complete with trimmings. She was trying to keep the festive mood...then, it faded.

Her insecurities overtook her. Trying despondently to hold on, she became loud and obnoxious. She had lost yet another battel...one , of many more to come...
anger engulfed her. She became irrational...and left.

I'll call her today....

**********

Talked with my middle child today

2005-12-22T22:43:00.000-07:00

Dear Lord, how I miss her! This will be the very first Christmas that the girls have been apart. My oldest daughter is having such a hard time being without her younger sister.

She came over today, with tears in her eyes, and sat on my bed. She's so scared.
Dear Lord, how do I help her...she knows she's rapidly losing her abilities. A mother should never have to experience this. The pain is unbearable...yet, I must continue to be strong...for their sake.

Tho we don't speak it, we keep thinking...why did she leave...especially now, with the diagnosis. I keep saying she had to do what she felt was best. Though she has moved away...she is and always will be deeply within our heart...deeply within our soul...

Merry Christmas, my baby...we will talk again soon...

**********

Not Your Fault

2005-12-22T15:59:00.000-07:00

This is my 14 year old granddaughter's response to her Mother's illness:

It’s Not Your Fault

“I’m sorry you guys,” her voice repeats in my mind. She said she was sorry. Like it was her fault, like she could prevent it. It’s not your fault Mom…

I can remember everything that happened at that moment. It’s almost frozen in time. A single, horrible memory, that won’t go away. I was thinking ‘why her?’ Why did she have to stand in front of her two children and tell us that she has Huntington’s Disease? She looked at us and said sorry for the disease that had been in her genes since birth. She had no way of knowing that she had it.

In case you didn’t know, Huntington’s is a rare disease. The only way you can have it is if your parent had it. Children of a Huntington’s patient have a fifty/fifty chance of having the disease too. You are born with it and there is no cure. Unless you get tested you won’t realize you have it until around your late thirties. Huntington’s causes your mind to deteriorate, or in simpler terms, you start to loose control of yourself. Some signs that you might see are uncontrollable shaking, memory loss, stuttering or slurring of words, and reactions are a lot slower. The biggest sign is a rise in the anger level. The disease causes the patient to be very moody and unpredictable.

The scariest part about it all is that one day I might have to tell my children that I have Huntington’s. My children telling their children, and so on in a never ending circle. One day my children might be writing a paper just like I’m doing now. It’s creepy to look into my future and see me in my mother’s position. I see myself looking down at my children with tears in my eyes, just like my mother had to. My mother’s fate effects how I now look upon my life. Things seem different now, yet nothing is different. I want to be able to look into my future and see how my life will play out. I want to prepare myself for what is to come. I want to be able to understand what might or might not be inside of me.

When my mother told me that she had the disease I didn’t know much about it. I remember wondering what it meant, what would be different. I knew that my grandfather had the disease, so did my aunt, but not my mom. There was no way my mom could have it. Her test results came in early, so it was a slap in the face when she told me. I wasn’t expecting it at all. In fact I was angry because when they told me they had to talk to me I thought I was in trouble. I was mad that she was going to ground me or make me clean my room.

I remember her telling my brother and me to sit at the table. I was in the process of making a sandwich and she told me to bring everything to the table and eat while we talked. I made my sandwich and started to eat it. My brother sat across from me looking up at my parents. He had that, ‘I didn’t do it’ look on his face. I was mad at him too, because I knew that he’d get away with whatever he was in trouble for. I was mad at all of them, and I shouldn’t have been. I shouldn’t of had thoughts of anger when my mom needed me the most.

I guess my point is that I’m sorry. One moment before she told me she had the disease I was mad at her. I was angry for something as stupid as having to clean my room or getting grounded. I can’t help feeling that I owe her something, like I hurt her in the worst possible way. All I can give her is my love. I know that it doesn’t change anything, but it does help.

I remember the darkness outside the house. It contributed to my feelings, my want for understanding of what was going on. What was going to happen. Everything seemed so unreal within the house. Time stopped, for a single moment, everything froze. I remember the words, the way they weakly fell from her lips and into my memory.

“I’m sorry you guys,” her voice repeats in my mind. She said she was sorry. Like it was her fault, like she could prevent it. It’s not your fault Mom…

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Bethany has some poetry she wrote, so I created a page for her. I feel it's important for her to be able to get her feelings out. She's so grown, at such a young age. My first grandchild, and so like her Mother...

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Here is a link to my Family photos: http://www.willowsrealm.com/nillasphotos.html

My BlogSpot on the Web

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Welcome to My Blogspot on the Web.

As most of you may know, my passion in life (other than my family) is writing. POETRY, to be exact; although I have written many short stories that I have never published. Who knows, that may very well be my next adventure.
Here is link to my site http://www.willowsrealm.com/ which is filledwith original poetry, free e-cards, photos of my family; and guest poets.