Thursday, April 21, 2011

Trip to Hawaii

As most of you know we went to Hawaii in February.  It was a great experience and I am forever grateful first most to God and then to everyone else involved in making it happen.  I am posting two links to the two videos that are associated with the trip.  The first one is the video that was done at our house that was shown at the presentation in Hawaii prior to our introduction.  The second video is of the presentation itself.  Both video's together are probably about 15 mins.  I also have a pdf of an article that Nicole had published in the Pulmonary Hypertension Association's quarterly magazine as soon as I can figure out how to do so or get my daughter to do it for me.

http://mwserver.net/ut_new/reviewVideos/UTR_118_patient.html
http://mwserver.net/ut_new/reviewVideos/UTR_100_Northrop.html 


Have a blessed day!
Hugs:o)
Jane

Monday, April 18, 2011

13 years ago today...

On this day thirteen years ago I lost my mom to complications of brain surgery due to lung cancer.  I was with her when I unplugged her from life support.  This is one of the hardest things I've had to do but I know my mom would have wanted that.  I believed that she would be able to breathe on her own without the help of life support and was devastated when she didn't.

I wish she had gotten to see Nicole grow up.  Nicole was 2 1/2 when she died.  I hope that she would be proud of me and the way I handled her memorial service and my life since she died. I hope that she would be proud of Nicole and the young lady she has become.   I think of her almost every day as she was my best friend. 

This is probably the first year that I haven't hated or cursed April because my mom was diagnosed, had brain surgery and died all between April 8th and April 18th.  It seems that there's always something bad that happens in April and I'm trying to change that thinking.

I am also grateful on this day for my mother-in-law who has been like a mother to me.  I love her dearly and would do anything for her.  While she will never take the place of my mom she does come in a close second.

For my aunt and uncles who will also remember this day as the day they lost a sister, you are also in my thoughts.  I also think of grandma and how every year she grieved the loss.

I will choose to remember not so much her death today but the life she had and what she meant to me.

Tuesday, April 12, 2011

I'm so proud of Nicole....

I am so proud of my daughter Nicole.  She is sixteen years old and if you read my posts you know that she is chronically ill with  a rare lung disease that was caused by a congenital heart defect that didn't get diagnosed until she was 15 years old.  She is now "officially" a published writer so to speak.  She has her first article in the Spring issue of the Pathlight magazine which is the quarterly publication that the Pulmonary Hypertension Association puts out.  This is the lung disease that Nicole has.  I haven't gotten the magazine yet in my mailbox :o( but I did see it before it went to print.  I cried reading it.  The article also shows a piece of her artwork.  She really conveys what it is like living with an  incurable disease. I know she will write many more articles in her future.

I'm also so proud of her for the volunteer work she does at the homeschool co-op we attend in the spring and fall.  She works in the pre-K classroom and is a joy with those children and they love " Miss Cole"  so much.  I love standing at the door watching her interact with them.  I know why she loves them so much.  They love her for who she is and don't judge her.  She also was a teacher's helper with a K-1 class in which she would draw a picture and write a story that went with it each week on a fruit of the spirit.  She did an awesome job and really connects with those children. You can see the joy in her face and in her eyes.  The teacher of the class Mrs. Harper has been such a blessing to Nicole and I am forever grateful for her.

I see everyday the gifts that God has given her  through her love of children, her art and her writing.  I know that she has lived her life not being able to play sports and doing what other kids do.  She has only so much energy every day, takes a lot of medicine and endures side effects and fatigue but I believe that if she were able to do those other things that she probably wouldn't have had the gifts she does.

The courage that she has displayed since our lives were turned upside down on January 22, 2010 is amazing  to me.  She will never know the influence she has on other people whether she sees it or not.

I'm so blessed everyday that God gave Nicole to me and my husband.  She is a joy and I am grateful every single day that I can call her my daughter.  I love you so much Nicole... you are my heart and my life.  I see  a little of Jesus in you every day.

If you made it this far and want me to send you a copy of the article please send me a private message via facebook,, leave me a comment or you can email me at jbones1961@gmail.com and I will  send it to you.
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