Sunday, May 27, 2012

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!!


Thursday, May 17, 2012

Respect and Hope..

Brendan MacFarlane - The Road

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 

Thursday, May 10, 2012

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 { }  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.