It has been to Long

KAte and Nevaeh Christmas of 2012

 Wow, How life changes so quickly ... Nevaeh Iris came home safe and should and as you can see by the pictures she is growing and is a blast to be around. Her smile is able to light up the room.
Kate is doing ok. She is struggling with her JHD. It causes her to fall or trip. It has caused her swallowing to be servery affected. The medication she was on before has caused many ticks and other issues. So we are weaning her off it and hopefully we can either stop medications or we can use a different one.
I am angry that the ticks she developed from the medication she was on. It does NOT seem fair that I made sure to have her enrolled with doctors that specialized in JHD and HD and yet this happened  I am angry that no matter what it is a losing battle. I am mad that HD has taken over our lives! ...
Kate is fighting to keep going. I see her depression and I worry. I feel my depression and realized that even when I am doing my best it is not enough. I know that God has a plan and for that I am thankful. I often times see others and hear them fuss about their lives.. AND i want to scream "REALLY ... I CANT DO THIS ANYMORE.. instead I walk away. I walk away and pray for guidance. and peace.
                                                                               
I am sorry if it seems that I am overwhelmed.. the truth be told I am... Between Shawn being Autistic and ADHD  and trying to help Kate it can be overwhelming.

I see my loved ones and I know that they are here, and that I thank God for them each day. The struggles with the depression and anxiety I have are more to deal with my worries for my children. Kate, Mikey, Landon Shawn and Gabe. How to be a mother to them all and how to keep things going. And how to help all of them.I see our family and it makes me smile... I also at times what to run away screaming!! :)

Nevaeh Kate's little princess and out little ray of sunshine

How to make sure Mikey Landon and Gabe all feel that their thoughts and feelings matter.and what to say when people look at Kate thinking she is drunk or something is wrong with her.. I look at her and see my daughter, My child how drives me nuts who makes me smile who can make me cry and most of all who I LOVE... She works so hard at caring for her daughter and dealing with JHD
Each day with all our children is a blessing and there are times when I wish I could fix things for them give them whatever they need... I know this is not possible  I give them my love and show them my faith. and pray that God takes care of the rest.

Landon (button Boy) and his favorite little person Nevaeh

It been a hard year. But it has been filled with blessings and love too. My depression will go away and my anger to and it will come back .. But so long as I accept God is in control... I will keep fighting.

I wrote this Poem shortly after Kate's testing and we found out she was positive for JHD

I woke up and realized that my life had not ended

I saw the sun rise even with pain and sorrow in my heart

I heard laughter of children even with pain in my soul 

I felt safe even when my world was shattering 

I saw the blue skies in spite of my tears 

I woke up and realized that my heart still beat 

I saw the sun rise and caught a moment of hope

I heard laughter of children and heard my voice join 

I felt safe because my world had just opened more

I saw blue skies because the tears washed my eyes clean

I woke up and felt heavy and weak 

I saw the sun rise and felt cold and alone

I heard laughter of children and could not smile

I felt alone even surrounded by people

I saw the blue skies but felt the biting wind

I woke up and prayed

I felt the sun rise and warmth on my face 

I heard laughter of children and stayed on my knees

I felt at peace as my heart poured out to My Father

I saw the Blue of the skies and knew He was there. 

I never though I would share this and I only do so that you many feel the hope and peace that God offers. I was broken and torn apart. I couldn't breath with out wanting to scream and fight. I know that I still fight this battle. I am able to win each day because of God and the people he has led me to. 

I thank each of you for loving me and my family in so many ways. Thank you for kind words when we need them and love you show each day. 

Thank you God for bring me to this Place.. even in times of pain You are there.... I in my human way just need to remember this always

Thank You God for your Gift of your Son..thank you for the Blessing that don't feel like blessings.. Your plan is perfect,  thank you for reminding me that I am never alone.. and that it is my job to trust you. Thank you God. I may fall and falter and stummble and mess up.. But God you are perfect and you will never fail me.

God Bless and Merry Christmas!! 

we are hoping to bring Kate and baby home today.. What a roller coaster of emotions for us as a family and as parents.. I think i send enough tears to fill the ocean..
i could sit all day and watch Kate hold the baby.. and to see her face as she touches Nevaeh hair or cheek or fingers. It rocks me to my heart and soal. I thank God for all his blessings not just today but always. I am praying that Kate's dad and myself are strong enough to help Kate. Some days I just want to scream and jump...
We look to the coming days with hopefully hearts and wonder as Kate and Nevaeh bond even more. We pray that all will be well.
Kate is looking forward to getting home and just holding her little one. As is type this she and Nevaeh father are in hospital room getting ready to be discharged. Then they head down stairs to to Nevaeh room. She was placed in NICU to check for with drawls from the meds Kate was on. The dr have said she is doing fine.
I pray that today is the day she come home with her mom.

the convention and home again!!

So Landon and myself attend the National Convention in Las Vegas this year... I totally loved seeing so many friends!! and Landon has so much fun selling buttons and bracelets and meeting people.. But our trip did not start out so great nor did it end on a good note... I can say that should the HDSA host  the convention at a "resort" again.. we will not attend...the cost of food and drink at this years convention was insane!! I took with me 200.00 for 2 people for food.....from my food money I took home, less than 75.00... now keep in mind it was me and Landon only.. it was insane.. for a slice of pizza and a bottle of juice it cost 9.77.. and a coffee from me was 5.86... lets just say that for families that are living on budget... this was really a bit outrageous...  and I have other items I would rather spent my money on... We were blessed and received a partial scholarship from Iowa and also received a unexpected gift of 200.00 from a very dear person. So we were blessed!! and We are able to enjoy meeting and many sessions!!
I was disappointed that I missed some of the ones I wanted to attended, Thanks to our flight being canceled and than so many issues trying to check in.. But in the end we got there and we watched the youth talent show, Landon got to enjoy a smoothie with a special  Friend.. ( Katie Moser) and i was able to attend some sessions. But I must say the most important part of this whole trip.. well i will have to say it was hearing Jacey Mukka name announced as young person of the year.. ( personally I feel she should have young person of the century!!)  But to be part of crowd screaming and clapping and standing ovation( that she received even though she was in Michigan... ) The tears that ran down my face were for all the kids and for Jacey.. for all her hard work and her dream coming true.. that JHDKIDS.com is helping.. kids helping kids!!!
I can't thank her enough for all the help her and her family have given us.. They are proof that LOVE is strong than than JHD or HD!!!! We can never thank her enough for showing us hope when I was struggling, and showing me what faith is!!
I am sadden with HDSA details with their funds. saddened as I read Charity Navigator rates them at a 2!! It makes me so very angry that people work so very HARD on raising money and to have not it sent for research makes this whole HD community rock with angry and betrayal! I pray that they realized what people are saying and To look at their families and come back to what this community is all about! The words and heated feelings I heard at the convention and since is truly discouraging!!
I was really blessed to sit by Larry D. Holler DVM, PhD from SDSU in Brookings. What i heard form him gives me hope and i hope to hear from him again soon!! I wont say I totally understood all what he was talking about but he was very patient with me and explained he was looking for researcher and that the last paper about hd and gm ganglidside was very very hopeful and promising. I am excited to read it!!

We arrived home and went to work on Nevaeh room.. My sister Sherry ( God Bless her) did the floor and helped paint the walls.. Shawn wrote on the wall with paint primer ( it is right by the crib, it is says I love you) and her and Dustin put the crib together! than came the fun parts!! putting up butterflies and flowers and Little Monkeys!! than the dresser.. which I picked up for free. than Sherry and CJ and the boys repainted..It really look super cute!! Cant wait for baby to come home! Mike had worked so hard on the room. He did a wonderful job and Neveah is a lucky little girl to have Grandpa looking out for her.
Kate is doing well, we are looking to go back to Iowa City in September.. ( I think) Kate is also schuled for a swallow test. I can say that I am so proud of her. She has a plan for herself and for baby. But it one that she can deal with. So very happy that she doing so well and looking forward to seeing her hold her child. I know my tears will fall when I see her hold her child. Nevaeh is giving her a reason to keep her eyes on what she has and how she is loved!!
So thats it for today..
Tommrrow is Fathers day.. Please remaber to tell your loved ones how much they are loved.
God Bless and as alwasy Keep fighting The Good Fight.

best laid plans

Mike is busy building Nevaeh's room. I am amazed at his determination to get it done by himself.. Something that he can give to Kate and baby from his heart and his own hands. I am glad he is taking this on and making sure his baby girl and her daughter have rooms of their own.
We go back to Dr on Tues and than on Friday... it is kinda scary each time we go.. not sure what the dr will say. He says Kate is mostly likely deliver early. The baby keeps changing her blood rate and such.. MMM maybe she will be like her momma and keep us all on our toes.. :) But Kate has been taking care of her self and seems to be handling this all with her own quite grace and strength.

Landon and I are to leave for the HD national convention on June 7th and return on sunday june 10th... This scares me as i really need to be by Kate side should she deliver early.. yet she says mom you cant not go. Landon is so excited and you are to.. So i am praying about it and asking God to guide me no matter what comes.. As the say the best laid plans.. can always be disrupted.. Landon says that he will stay home if Kate has to go to the baby dr.. I say we will wait and see.
It goes to show that God's plans are quite often not our plans. Acceptance of the changes he brings us can be hard. But trusting in him to show us the way is never hard..

Landon made more brcelets and is looking forward to selling them and giving ther money to Jane for the JHD research. We often have issues with how the national level uses donations so we send it right to Jane in Iowa city. It is sad that so much of the monies raised for research is not spent on current research.. it is frustrating that our families with hd in them are struggling and on the national level they said we are putting in place services for our HD families.. but they cant tell us what those services are..  Yet I still will support and call attention to the disease.. I will keep calling and writing to National asking my questions and demanding answers. I will keep telling National what our families need and are asking for. it is the only way we know how to help others..
We will keep praying that a treatment can be found. That the people who guild and make the rules for us can be shown that a possible treatment is worth for our loved ones. The dragging of feet and the inbalitiy for labs and countries to work together is appalling to me. The information that could be shared and than brought to our loved ones with HD  to me is more important than money. But our government dose not see that.. that is sad ... how many other diseases could be cured if the FDA would only allow it?? I can tell you this that Kate has JHD and a possible treatment is worth trying , because with out any the end result is as we all know horrific. I have read about trials in other countries and yet our country says no way... it seems to me that all the money spent on making rosters and "collecting" date should be used on making head way with treatemts, not more paper work. Kate is part of 3 different trials and all she does if sign her name so people can look at her medial records.. that is not a active way to find treatment..
I many becoming more and more frustrated as Kate due date approaches.. I want her see her daughter attend preschool and graduate and fall in love... and it feels like there has been not forward progress in slowing this disease down or any other so called treatments. instead it is more and more pills given to her so she wont get depressed or have mood swings or movement issues or be in pain.. ect... and perhaps i am wrong and not reading the right papers and releases.. and if I am please someone  show me.... Till than I will keep talking and keep fighting and keep asking... and MOST OF ALL I KEEP PRAYING...

To all the families fighting with us.. I am fighting for us all for our loved ones!!


 

Respect and Hope..

Brendan MacFarlane - The Road

  http://www.brendanmacfarlane.co.uk/index.html

Aint nobody gonna tell me how to live my life and not know me
but I’ve always thought if I loved you'd show me the road
so they pushed me and shoved me
trying to break me down till I'm on my knees
but I've always thought if I loved you'd show me the road

so don’t cry for me no, no
don’t shed a tear on the day that I go
so don’t cry for me no, no
for I'll be there waiting
for you to show me the road

And those hard times come knocking
and you feel your whole world caving in
but always believe if you love
he'll set you free

so don’t cry for me no, no
don’t shed a tear on the day that I go
so don’t cry for me no, no
for I'll be there waiting
for you to show me the road

This song is says so much...
I pray today that God is with us as we go back to dr for Kate's baby today...
There is a song that say "i will Praise you in this storm. and though my heart is torn, i will praise you in the storm."
The storms of life.. all the good and bad...I look at all that is happening and I thank God.. and when i get lost or downtrodden I praise the Lord..
Mike and I have struggled with finding our way.. When you have a child that is ill, and that illness is terminal (like Kate)  or a disability (like Shawn) some days are harder.. Some days you pray for the evening to come so you can lay your head down and sleep... And when your child is an adult like Kate, find away to be a parent and still respect her, and understand what she needs, can be frustrating and at times insane.. We do not have a handbook that says at this point you will do this, and at this time you do this..Kate often has a hard time explaining  to us what she wants.. and it makes harder.. But i think the hardest part of all of this is how easily she changes her mind... it all depends on who she is with.. part of this is due to that fact she dose not want to deal with conflict. ( except with mom and dad) She know she can say what she needs to us and we will always love her and find a way to cope with it.. She knows that if our feelings are hurt we will still love her and support her. She knows that we have her back and that no matter what she does she is our daughter.
I know we are doing ok and she is doing very well.. but some days it seems I cant get anything right... and I feel that I often times think "ok that's settled and than BAM... it not. she changes her mind or something like that.. I hate this Disease... I hate it hate hate it ...
I hate that I never know what to expect... I hate that her abilities have so changed... I HATE IT.... I want my daughter to raise her child till she is grown and I want to be a grandma, and hold Kate's Hand when she is worried and to spoil her baby girl, I don't want to fight over what is best for KATE'S DAUGHTER!! I am respecting what Kate Asked... I refused to make KATE"S LIFE MORE STRESSFUL.. I know that she can't always take care of her baby and she will need a STRONG PERSON... I just am afraid I am not that person... and I know that she struggles with it so much.. she tells me one thing and than baby's daddy something else... and since his family has decided  that they will take the baby when Kate is unable to care for her, it can makes things very stressful... Kate dose not see or feel this.. she is blissful unaware..She has asked for help to find a guardian for her child that will ensure both sides get to be part of child's life. She was said she unsure of how the baby father would react to this news.. She also has felt that her wishes for Neveah have not been respected.... Now I don't know how much she has expressed her wishes.. so that many be the issue there..I have a feeling that many tears will fall on both sides before this is all done.
So I ask our Lord to Guide us and led us to be strong for Kate and for HER CHILD.. They need to be loved and cherished.. they need to be supported and not do the supporting.. Kate is strong, and she will strong for her daughter which won't leave any time left of others.. This is what being a mom is all about....
I ask God to help our families come together for Kate and Nevaeh.. I ask our Lord to guide us, in his ways. I ask this all in His Name and for his Glory Amen
 My time this am with the bible as led me to Matt 5.. so hard to read and comprehend when I have sadness and anger in my heart.. I give God the glory to lead me to this chapter.. For I now see what he has put before me.. I find peace in what must be done.. I can only offer my apologies for my thoughts and feelings.. can i do this?? If I am truly a christian I can and will. Lord be with me as I gather strength to do this 

Not so sure if it needs to be shared...

WOW... how time flys by. Mothers day.. and my birthday... a trip to the Omaha Zoo... I am so excited to do this. Can't wait to see the boys faces as they look at the animals.

Kate is in her 8 month and doing well. So excited to meet this tiny little girl who is making my baby girl a mommy. Ups and Downs worries and stress.. but we are so very excited to meet her..I cant wait to see Kate hold her.  and for those of you who have asked.. yes we will hold a baby shower for her Kate.. But it will be after Nevaeh is here. Kate has asked we wait so everyone can meet Baby Nevaeh Iris there. Kate has help me in so many ways, not just with dealing with her JHD, but even more so to be a better parent to my boys. (and Grandma to her daughter) Kate has shown me how to find patience when faced with events or issues.. after all she is faced with she is teaching me..For example.. on may 1 there was a baby shower given by Nevaeh's fathers family. Katelyn had found out about it on Friday night and had said she would be unable to attend due to us having people over for out "TEAM HOPE" walk.. She did not tell me or dad about this shower. I felt horrible about Kate not being there after she told me about it on Tuesday. I asked her "honey, why did you not tell us? You should have gone ,we would have totally understood." Kate replied "It ok mom, I talked to Nevaeh dad and he understood, I just feel bad cause Nevaeh's Grandma was sad I was not there." I looked at Kate and said " Honey talk to them, let them know you really appreciate everything they did and you hope they will come to the shower we are giving." Kate: "I will, and I am sorry I missed it." I was thinking about it later and said to Kate "It kinda makes me feel angry that they would throw a shower and than be upset you were not there, when they knew you had friends from out of town come in for the walk." Kate looked at me " Mom, it is ok, and I am not upset and I hope they come to the party we are having, but if not it is ok, don't be angry mom." I looked at her a laughed, " Yes Kate, your right, what happen is too bad, but not the end of the world and we will invite them all to the baby/welcome shower." Thank you Kate, for reminding me, to not stress the past and just look toward tomorrow.
Kate showed class and understanding for everyone. This is her gift to us all. Her wish is that her dad and I and Nevaeh's other grandparent's get to be just Grandpa and Grandma.. not parents to Nevaeh. My job is to make sure this happens for her and the baby. Kate has the ability to see the good in many issues and is able to share that view with her loved ones.I pray that we return Kate's love and help her to achieve her needs and wants for Baby Nevaeh and for herself. That is my daily prayer..
As I sit and write this it occurs to me that some may feel that I am exposing to much..and to that I say.. this is what this blog is for, to share our life, all parts.. not just the parts that are good or ok. So I hope I do not offend ANYONE.. but if I have I ask for your understanding and forgiveness.

Our banner with Sponsors!!

  The team walk held on April 30 was a wonderful success. 30,000.00 dollars raised!! can you believe that? and over 300 people showed up to walk/run... I still am in shock.. I want to thank the Ladies who work so darn hard at putting it on.. Margret,Betty, Lorraine and all the others!! I am humbled by all the work they do!! I often think I need to do more.. to fight HD/JHD . I see what they do and how they offer hope and comfort to so many, it inspires me to do more and keep fighting!!

Kate's Kronies.. at least some of them

More Kronies..:)

Kate's Bean

I have to share this... I work for the best boss EVER!!! Dr. Arnie Beukelman who owns the AVENUE VET CLINIC IN SIOUX CENTER, IOWA has donated to our local chapter and JHDKIDS over 4000.00 combined!! He also has allowed me to ship Landon bracelets from work for no charge! He has given me the outlet to share and inform many people about Huntington's. We had a arcticle written in the Kennel Spotlight {http://www.facebook.com/pages/The-Kennel-Spotlight-Magazine/294713260541131 }  and this has allowed many people to e mail and ask questions about Huntington's and learn even more. He and my co worker have been so very supportive of Landon and his efforts to raise money.. they also are so very understanding when I have to leave due to sick kids dr appointments ect... I never have to worry about not having a job.. Dr. Arnie has given Landon hope when he was getting discourage (his bracelets did not sell in month of Jan and Feb). This help has endeared "Dr. Arnie Grandpa" (Landon's new name for him) to Landon. Also this past Sunday night Kate's dog Bean was hit by a car, (bean is a 146lbs mastiff cross) and when Mike called Dr. Arnie he meet us at the vet office with out complaint. He took wonderful care of Bean that night and Monday morning when I walked into work, bean was wagging his tail, after x rays and the overnight stay in the office, pain meds and antibiotics, Bean came home.. and Dr Arnie charged of all of this.... $0.00....(he did say he would require at least hour of baby holding, once Nevaeh is here) I was humbled. The only thing he said was... tell Kate I am glad everything is ok and give Shawn a hug (Shawn was crying on Sunday night when we left with Bean)... I cried.. for his act of kindness and his concern for Kate and Shawn...It is not all about what he gives to Landon and Kate's causes.. it also the way he shows he cares about our family.. Dr. Arnie and his wife Cher hired me when I was 7 month pregnant with Landon, I was desperate for a job and they said they would give me a try.. almost 8 years later (and 3 little boys later) I am still there. I am still grateful for the chance they gave me. They have allowed me to be a mom first and a worker 2nd,... they have supported me and shown me compassion and understanding..Words can never express what appreciation  and respect I have for them.
So

Finding Joy and Hope

Kate

LOVING THESE DAYS

So busy these days... Some times I forget to slow down!!
Kate and Baby are doing very good!
She is on meds for her chorea.. which seems to me helping but she says it makes her shake like leaf. But she is willing to take it till we talk to dr again. Kate and her Little brothers are closer than ever.. males me giggle..

Gabe feels "Vavaeh"

Smiles

New days ahead

 We have been so busy, times seems to just slip away.. I could just stay in these days forever.. but at the same time We are so very excited for Kate to meet her baby girl in person.. to see Kate's face and to watch her heart grow the moment she is born!!

Kate asked me to be in the room with her as she delivers... this is an amazing honor and I am so happy to do for her. She also warned me that I can not fight with her boyfriend or she was kicking us both out.. :) I love her!!  I am not sure what I most excited about to meet my granddaughter or to see Kate's face when she meets her daughter.. I pray that Kate's daughter has her sense of humor and her giggle..
Kate had some scary days ..with high blood pressure and with baby not moving.. yet God has kept both Kate and Baby safe. Thank you God!!

SOMETIMES THINGS WORK, SOMETIMES THEY DON'T~

I have something to voice.. and I pray that God Leads me.. that the words that I type may not offend anyone..as that is not my intention..

I joined Facebook about 5 years ago??. Our lives have changes so much in those 5 years. I have met so many wonderful people and be able to reconnect with past friends! 

I joined on line support groups for JHD and HD.. and I have watch as people have worked very hard and put so much time a effort in to raising awareness for Huntington's .. I have been amazed and humbled at peoples ability to find ways to fight against a disease that at this time has no treatment.. 

This is a blessing for me..

I can't express how much I need to read blogs and talk to others who know what we are going Thur.. 

I am saddened to see so much discord and anger and pain in these support groups.. as we are all fighting the for the same thing.. I know that everyone has their own opinions and and reasons.. this is not to disregard any ones thoughts feelings or beliefs..

I can't understand why all the angry words.. and I understand why we are so protective of our work in raising awareness and our loved ones with HD and JHD .. My voice is asking 3 things

1. why fight? can we just talk and work out a comprise..

2. divided we fall..TOGETHER WE OVERCOME ALL

3. love one another..do unto others as you would have them do to you

I may not understand everything that is happening, but I know that when someone talks to me about JHD or HD and I give them 3 web sites to visit and they tell me "wow i never knew".... to me that is what being an ADVOCATE is all about.

Now I give credit where credit is due and I feel hope and love from all my HD and JHD family..

I ask for all of us to come and pray and look to each other to build up and not tear down.. Please...

and if there is an issue that there is no peace to than I beg of you to let it go.. for if you hold on to it.. it will consume and there will be no peace for u... Anger breeds hate and hate will hold you back!!

I know this as I struggle with feelings of anger and Hate ..

I not asking you to say nothing if something is bothering  u.. I am asking that we do it with a goal of working together.. when we come at each other with hatred in our voices and hearts... nothing is helped and we are left feeling empty and with more anger that we had to start with..I only am making my feelings and thoughts known, we have lost so many to this disease...

I pray that we can come together and find a way to work together and show the world just how strong we are!!

I do not mean to trivialize anyone's thoughts or feelings!! You all are my HEROES!! 

God bless you all!!

I leave you with words from Jesus- these words have helped me and given me much peace when my mind and heart are in turmoil...  

   ²⁷ “But I say to you who hear, ^(AD)love your enemies, do good to those who hate you, ²⁸ bless those who curse you, ^(AE)pray for those who ^[o]mistreat you. ^{29 (AF)}Whoever hits you on the cheek, offer him the other also; and whoever takes away your ^[p]coat, do not withhold your ^[q]shirt from him either. ³⁰ Give to everyone who asks of you, and whoever takes away what is yours, do not demand it back. ^{31 [r](AG)}Treat others the same way you want ^[s]them to treat you. ^{32 (AH)}If you love those who love you, what credit is that to you? For even sinners love those who love them. ³³ If you do good to those who do good to you, what credit is that to you? For even sinners do the same. ^{34 (AI)}If you lend to those from whom you expect to receive, what credit is that to you? Even sinners lend to sinners in order to receive back the same amount. ³⁵ But ^(AJ)love your enemies, and do good, and lend, ^[t]expecting nothing in return; and your reward will be great, and you will be ^(AK)sons of ^(AL)the Most High; for He Himself is kind to ungrateful and evil men. ^{36 [u]}Be merciful, just as your Father is merciful.

   ³⁷ “^(AM)Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; ^[v](AN)pardon, and you will be pardoned. ³⁸ Give, and it will be given to you. They will ^[w]pour ^(AO)into your lap a ^(AP)good measure—pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return.”

 Luke6:27-38

what a week...

I have been so busy this past week.. Work, Doctor appointments and travel for work and of course mommy jobs and church, and Huntington's meeting. 
Travel to Morton Mn and attended the MN PET BREEDER ANNUAL CONFERENCE...there they auction off 3 of Landon's bracelets and we raised a total of 659.00 for our HD chapter.. AMAZING.. totally scarey to stand in front of 50 to 75 people and tell  them about Huntington's and ask for help..the prayers and well wishes were amazing.. so many asked what is HD and where can they find out more about it.... 
 http://www.wehaveaface.org/feature
JHDKIDS.COM
 I told them and even showed some of the people on my phone... I am trying to find a way to fight back against this stupid disease. I will until my last breath.. not just for Kate and her Child but of all these people who have lost loved ones and who are fighting and those at risk...

       I needed to attend the HD meeting as I am struggling with feelings of grief an anger and happiness.. It is very strange to me to go thur all of these emotions almost on a daily biases.. I can talk to my support group family knows these emotions.. The issues I have toward Kate's baby's daddy are a totally separate issue.. I am working toward what is best for Kate and Her baby.. not what I want or feel.. this a hard because sometimes the two issues are not the same... and many times it is in the eye of the beholder as far as what is best for Kate and her child..Meaning that I may feel one way and she may feel another..
 I know this, I pray for Our Lord to Guide me and give me the wisdom and strength to be good to my little girl and her daughter.. I don't always say the right thing or express myself to Kate, but we are working toward what is best for Kate and Baby girl, and with God leading us we will get there...I can only pray that this is enough.


At our HD Meeting we were able to ask questions to a panel of lawyers fro MN,Iowa and South Dakota, about estate planning and guardianship and conservatorship and the like.. it was very helpful and yet very scarey.. 




Next...
Kate is 28 weeks along baby is weighing 2lbs and 6oz... and looks perfect.. Landon was there to see the ultrasound this time and enjoyed seeing the baby...


  ¹⁷Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.
   ¹⁸Of his own will begat he us with the word of truth, that we should be a kind of first fruits of his creatures.
   ¹⁹Wherefore, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath: James 1:17-19


Her belly is showing more and more... the baby movements are getting stronger and stronger. It has been so amazing to be a spectator in this event..It has not always been easy for me to watch Kate worry, or watch her tears..But her smile when she touches her growing womb and her voice softens when she speaks about her hope for her child is a blessing. 
She is so excited to meet her child and hold her in her arms.. We are excited for her!

The difficult decisions
We have a hard time working out some choices with Kate. We have to take in what she feels and her thoughts.. She is still our Kate and a precious gift from Our Lord.. for us to disregard her thoughts because she has JHD, would be a disservice to her and to her life. We do make some choices that she might not agree with but we always want her to feel loved and respected. We have had advice given to us that we should not do this..But as a parent and a caregiver I can't do this without feeling I have failed her and my duty and responsible to her. 
I know that there are days that I feel that it would be easier for me to just do what I want.. I choose to not do this as I know in my heart that no matter what JHD does to Kate, She still has thoughts and feelings that need to be acknowledged and expressed, and my feelings come in 2nd and I have to base choices and decisions what is best for her and NOT my feelings .. 
There are times that Mike and I sit and talk and wonder what parts of her behaviors are from JHD and what is not..But we stand together..and I can say this with out Mike, I not sure I could do this.. He is rock..He keeps me sane.. (if that's possible :) haa haa .. yes I have a sense of humor about all of this for with out humor.. We might not be able to function at all.. We are a family and we are surviving and we will put our trials and our blessings in Gods hands.. for with his guidance we will be ok. 
SO we offer our praise to God and may all we do be for his Glory.. For with out him we would be lost...






 

Never Let Me Go...

I watch my children grow.. I watch my grown children change.. I wonder to my self what I could have done different. I can not claim that they are success only because of what I have done for them or with them. They are gift that God has lent to me and oh so many time I have failed them.. I try and pray that I do the best I can.

Shawn's face as he hears the song "Never Let Go"

 

than he says I love this song it God Song..

I thank God for them.. all of them.. I see their smiles and makes the day a good place. I hear Shawn sing "Our Lord never lets me go, Oh No never let me go" It is what he needs to face each day.. to know to never" Let go of Our Lord"..

Even though I walk through the valley
Of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle                                                          
Of the storms of this life
I won’t turn back, I know You are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming
For the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
You keep on loving
And You never let go
Singing
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
Yes, I can see a light that is coming
For the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
I can see the light
Yes, I can see a light that is coming
For the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
So strong
So wise
So loving Lord
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
Oh, Lord, You never let go of me

because in Our Lord We find peace.. strength...

DO i have fear?? yes.. I also have Hope .. and when I fail I look to God and Know he is with me.. thru ever High and EVERY LOW...

I can't say that I never cry or scream, or ask Why?? why Shawn, why Kate , why is Mikey struggling?, why is Landon hurting, why have I failed, It is what God shows me and leads me thru it.. He never lets go.. when I am strong he is stronger, when I am weak he is stronger...

 

Kate's battle with JHD is not easy to watch, an even harder for her to deal with.... She is pushed and pulled in so many ways. She sees life in way I don't, and at times I don't understand. It doesn't mean it is wrong just different. It is working to find a middle line.. The struggle with it is finding where she is at. and truly hearing what she needs from us. To make choices that are hard and the ones that we need to find a middle ground..

I don't think there is a right or a wrong way...no hard and fast lines ...so we work with what we have. I ask questions and hope the choices I help her make are for her good..and I pray that God "never lets us go"

love your enemies, bless those who curse you, do good to those who hate you,

^{Matthew 5 43-48
43} “You have heard that it was said, ‘You shall love your neighbor^[g] and hate your enemy.’ ⁴⁴ But I say to you, love your enemies, bless those who curse you, do good to those who hate you, and pray for those who spitefully use you and persecute you,^{[h] 45} that you may be sons of your Father in heaven; for He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust. ⁴⁶ For if you love those who love you, what reward have you? Do not even the tax collectors do the same? ⁴⁷ And if you greet your brethren^[i] only, what do you do more than others? Do not even the tax collectors^[j] do so? ⁴⁸ Therefore you shall be perfect, just as your Father in heaven is perfect. Matthew 5,43-48

Love my enemy, that is a struggle.. it is easy to show love to those who are kind and loving toward my family and myself.. it is easy say I pray for ______. It is not easy to truly pray for those who have hurt us.. and not a prayer for them to change.. but for us to find love for them... I find myself coming back to this bible verse over and over.. I find myself failing.. and very likely to keep failing.. Is is a frustrating place to be, to be filled with anger and all the other feeling that go with that.. I pray that we can find some peace ... It is a struggle. to Love my enemy.. or someone or something I perceive as my enemy.. I find myself wishing bad things would happen or that it would go away.. and I find my self back at Matthew 5, Even than Our Lord tell me what to do..
²⁹ If your right eye causes you to sin, pluck it out and cast it from you; for it is more profitable for you that one of your members perish, than for your whole body to be cast into hell. ³⁰ And if your right hand causes you to sin, cut it off and cast it from you; for it is more profitable for you that one of your members perish, than for your whole body to be cast into hell.

I pray that God stays with me and that my EPIC FAILS he will forgive.. I know there is forgiveness in him. I can't pick my brain and throw it away in the literal word.. but I can stop feelings of anger, guilt and hatred when they come.. and when they do come I pray God uses them for his GLORY.. 
  
Christ went thru more suffering and pain and death than i ever will.. it make a person feel very weak when I see what He has done and what he has given me. Perhaps, this is a time that i have to go thru to heal??
I am not sure, but i know that the fact is that, Our Lord is my guide in forest of my life.. and as long as i have him and keep in in front of me i will make it thru. 
It is not easy, as often i think. "i can do better.".(NO i can't and every time I try with out him, .. well let's just say EPIC FAIL... EVERY TIME... It is scarey to think of all those fails.. they haunt me.. and than I look in front of me and see his trail leading me..and I keep walking.. I keep praying..

SO this Easter I ask for forgiveness for those who I feel anger toward, not for myself to feel better but so that they may feel our Lords love. My God heal and show them the Love he has for those who are hurting
I also pray for forgiveness for all I have done and said to hurt people and for those times when I have shut my mouth when I should have spoken up, for those times I should have shut up and didn't. For those times that I feel I am right and no can talk to me because I am to stubborn.  Our God forgive me.


This is a Hard prayer to pray and truly mean it with my heart and soul..because I am dirty from sin and to ask for His forgiveness is hard..
      

Somedays I have trouble seeing the light

I tried to write yesterday, but it was to fresh.. my feelings and thoughts were quite jumbled..
So I am going to try today,, I guess I should explain why I feel this way??

Kate and Shawn.. birthday loves!!

Some days dealing with a child is hard.. and dealing with a child that has a disease that impacts their brain is at times so wonderful and other times so very stressful
I have two.. Katelyn and Shawn.. and I would not trade them for ANYTHING in the world. I, like any mother get overwhelmed, scared, angry, and sad-- I also Laugh more,give thanks for the little moments, and most of hold all my kids close to my heart.
So when I the bad days come, it seems to hurt more.. I am blessed to have all my children, Katelyn, Mikey, Landon, Shawn,and Gabe.. I would not change one thing about them.. They bring me great joy and love..
Days like yesterday hit me hard and it take a bit for me to find my feet again..
Yesterday Kate was upset with me.. and I can't say I blame her. I can understand her frustration with being 20 years old and having mom and dad living with her and having a boyfriend mom and dad don't approve of. It is stressful for her. I have tried to be honest with her and tell her where we are at and what we expect from her and her boyfriend if they are to be together. Sometimes she gets it other times I see her shut down and block out what we talk about.
I get mad at myself because I can't reach her.. I get mad because I don't know what part is her just being 20 years old and what part is JHD... I miss my daughter who came and talked to me about everything.. even the things i didn't want to know.. I have accepted that we lose her piece by piece.. What I struggle with is how she changes her mind and how we are always the bad people.. I don't know how to make it right with her.. and perhaps I can't.. If that is the case than I need to change my way of communicating with her and perhaps how we go about our daily lives..
I am not talking about her making a choice that we want.. I am talking about her stopping to look at the big picture.. I see that ability of her being torn down little by little... and it makes me sad...

When I try to explain why we do something or that we planning and why.. often times it won't sink in.. or she wont remember and than I am being to bossy with her.. Yes it is frustrating.. I am sure many JHD parents know..  But I still have guilt that We have to tell her everything and let her make her decisions..Yet she struggles with planning and following thur on plans on her own. She gets mad at me and than i feel like scum for the rest of the week..
Perhaps I just need to buck up and just do what is best for her? I know that I do, I just struggle with the guilt.

Landon & Gabe being silly

mommy and landon

Shawn is is the same.. The little boys and Gabe most of all cant understand that he cant throw a fit like Shawn and get away with it. It is hard for Landon and Gabe. Landon's heart is big and when he acts like a 7 year old I am shocked.. because he is usually so well behaved and loving. Gabe is a 4 year old who is trying to find his place.. he is such a mommy boy that at times i cant walk from one room to another with out him.. He is a loving little guy, but he picks up on Shawn's behaviors with out any problem.. the Good and the bad..
It is fine line to walk for all my kids. I feel many time I have let them down, I am trying and my love is unending, perhaps that's why it hurts so much when they are hurt or angry or just confused with me as their parent and their caregiver... I think I have have some growing to do also. I am far from perfect and always will be. I pray for them and ask that they may find God's love and that they may find peace and hope in HIM.

I don't mean to be whine or act like i have done nothing wrong in raising them. God know i have many epic fails.. in parenting and in life.. Some days it is hard to see any light and know that Life is Good.. (not perfect not wonderful, not horrible, or tragic, just good). Some days I see that light and hold fast to it knowing that it will get me thru the not so good times. But yesterday was a day that I lost the light, and I know it will come back, and God is with me, it is days like that that I have trouble seeing any light....


 I look at all my kids and see the people they are becoming I hope that in a small way they will look back and think of me and smile and say yep that was my mom and we knew she loved us. 

Amazing is our Lord

I still am in shock with the amount raised for our local HD chapter. I went to a meeting of the Iowa Pet Breeders in Ottumwa Iowa on Thursday Friday and Saturday. I did with my boss Dr. A G Beukelman DVM.. ( or as we know him Arnie) and with my wonderful husband Mike. There we talk to people about vaccines, worming  and all that stuff that goes with breeding dogs and cats.
Dr Beukelman had allowed me to set part of our booth with flyer about Landon and Kate and her battle with JHD..Terry Emmons from the Hunte Corp and Rob Hurd from APR and The board of Iowa Pet Breeders saw these and asked if they could have some bracelets to auction off at the IPBA annual auction ton Friday evening. I was humbled and was every happy to do so.
After a supper with Lots of Fun and talking, the Auction started... Than Rob Hurd announced that they were going auction off some bracelets made by a 7 year old boy who's sister has Juvenile Huntington’s disease. He also asked me and mike to stand up and we did..Than he told everyone in the room about JHD. He said how Landon is raising money for a cure and he been doing this for a year. 
Than the auction started: the opening bid was 100.00... than the next bid was called out 200.00 and than 700.00 and than 1000.00 and on... it stopped at 2500.00... tears rolled down my face. My whole body was shaking. My boss won the bracelets... and wrote the check for 2800.00... than he looked at Rob Hurd and said resell them!! and they did... and the opening bid this time?? 600.00 and than 800. and than 1000.00... and than they sold it again!! they sold the 3 little bracelets for a total of $4642.00... I cried and cried... and I hugged so many people. Even Mike may have shed a tear..We are humbled and we are grateful and most of all we are so very THANKFUL

the 3 most expensive bracelets i have ever held

They than gave the bracelets back to us... 
Now most of these people I have never met.. I have never seen.. and some I have never talked too. 
God was there that night.. 
I had a Amish man come to me and tell me " what a blessing!" and I said yes it has been and I am just in shock! He says to me" when God puts something into someone's heart, it happens." 
I could have not said it better my self. I am so humbled by the not only the amount of money rasied, but even more from the people who learned about JHD/HD and from their kind words and loving prayers. 

Yes, God is GREAT!! GOD IS PERFECT and faith in him is all we need! 
 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
WE PRAISE OUR LORD AND IT IS ALL FOR HIS GLORY!!


http://www.facebook.com/pages/Avenue-Veterinary-Clinic
https://www.aprpets.org/
http://www.huntecorp.com/default.html
http://www.iowapetbreeders.com/aboutiowapetbreeders.html
http://www.iowapetbreeders.com/upcomingevents.html

Through the Eyes of Children

I  did not write this but I wanted to share it..... I am printing it out and putting on my wall... because sometimes the hardships of life make me forget all these little things and make life so perfect!!

Through the Eyes of Children
When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard.
My kids see flowers for Mom and blowing white fluff you can wish on.

When I look at an old drunk and he smiles at me, I see a smelly, dirty person who probably wants money and I look away.
My kids see someone smiling at them and they smile back.

When I hear music I love, I know I can't carry a tune and don't have much rhythm so I sit self-consciously and listen. My kids feel the beat and move to it. They sing out the words. If they don't know them, they make up their own.
When I feel wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk.
My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.
When I pray, I say thee and thou and grant me this, give me that.
My kids say, "Hi God! Thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don't want to go to Heaven yet. I would miss my Mommy and Daddy."

When I see a mud puddle I step around it. I see muddy shoes and dirty carpets.
My kids sit in it. They see dams to build, rivers to cross, and worms to play with.
I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!

Enjoy the little things in life, for one day you may look back and realize they were the big things.

Some days I do get caught up in the worries and stress of life.. and than one of the boys or Kate will say something that stops me in my tracks... and than all the worries are gone ..if even for a moment. (exp: Gabe running around in a spider man mask.. and stops to say I love you mommy, BUG HUG MOMMY. or Shawn saying u make me smile today.or Landon getting home from school and finding me and wraps his arms around me and says I missed you today mom. and Kate saying "thank u" mom... 
They teach me so much.. God thank you for them for their smiles and for the hard times.. that make me love these little moments even more.

Kate's baby

baby girl at 20 weeks and 1 day.. 11oz and super cute!!

at 16 weeks

16 weeks

playing with her ears at 16 weeks just like mom

tiny foot

Kate baby at 20 weeks

So much is happening for this little girl.. We are so excited to meet her.. Knowing God has a plan for her and he knows her already.

The wonder of a new child is so overwhelming..
I look at Kate and see MY baby girl turning into a mother. I see how her hand rest on her tummy or how she touches her tummy.. I cant thank God enough for his blessings.. 
Kate has so much going on but yet for the most part she stays calm and happy.. Her giggles ring thur my heart as we talk about her baby and her brothers talk about the baby or about anything little boys talk about.. 
I wish that i could help her more.. take away the pains she experiences.. take away her worries and her fears..
But any mom feels that way..
She worries about her Boyfriend and his family.. she worries about the future hold for them and her and the baby.. She worries are based in truth .. I pray that God may give me and Mike the courage and strengths to help her and support her.
Kate's hope are that her boyfriend can come back to her healthy and whole.. that he can find his way to become the dad he will need to be. She knows this is not a change that happens overnight or in a months time.. It is life change. That it will take much courage and will power from him.. She knows the baby welfare is first in everyone mind.. She hopes and prays that we will all be able to work together and show her baby all the love we feel for her. She wants to make her boyfriend all better. and yet she knows that she can't do it for him that he has to take that on for himself.
 She has trouble with stress and worries.. So I pray that we can help her deal with it. I pray that the choices we make are based on love and for her benefit, and not on feeling that we may have.

We keep looking for ways to raise awareness for JHD and HD.. for I have found it frustrating and hard to travel thur the the social security and ssi and Medicaid highways. it is frustrating to find a dr that knows about HD yet we cant see him due to rules and regulations.. so we end up back at square one.
We searching for a dr to help Kate deal with her feelings and explain to her what is happening.. yet we are having trouble finding one.
Yet we have faith and knowledge that she will find her way.. That no matter what life brings we will trust in God to see us thur it.

We must trust in God for it thur him we have peace and hope.