Friday, December 5, 2008

Wishing on a Star

It’s funny in this blogging world that we can bare our inner most thoughts and feelings to millions of strangers and don’t think twice. Many of you I have gotten to know though this media and have become long life friends. So with this in mind I share with you this story.
Do you ever think I would love to “make a wish”, I think many of us do, wish for winning lotto, love or as I do to have a loved one back in our lives even for a day.
Well dreams and wishes do come true sometimes; as many of you know my son Matthew who is 16 has a chronic illness called Cystic Fibrosis (CF) and now diabetes just to add to it all. Cystic Fibrosis is a chronic disease and effects lungs, digestion, sweat glands and means a shorten life span.





His health this year has not been great. We are still waiting on an operation date to help him breathe a bit easier, plus added medication and now two needles of insulin daily.
He has had a lot of challenges in his 16 short years of life, yet he inspires me daily with his attitude to his health and life handling himself way beyond his years.I must say Matthew never complains and say Mum why complain there are kids worse off than me.
If you saw what he had to do daily to keep well it is very heart breaking for a mum to see for their child.
Here is a picture of what Matthew wakes up to daily.






Here are just the tablets he takes everyday, and believe it or not these have been reduced!
The brown capsules (enzymes) are what he has to take when he eats anything at all they help him digest his food. Since being on them this year he has finally grown and put on weight for the first time in over a year.












Matthew was having another round of blood tests and we came home with him not feeling well at all to a wonderful surprise.
All though sometimes he faces hard times, and its not all sunshine and roses, this week my dear son's "Make a wish" was granted. A wonderful foundation that grants a wish for chronically ill children and Matthew wish was for a new computer.
Well it has all the bells and whistles and then some plus a computer desk as well.
The smile on his face is something I will never forget as long as I live, the happiness, shock and tears for Matthew to forget about his illness for a while with this wonderful surprise was unforgettable.







Here he is at his computer, may I add I haven’t seen him for days LOL.



Here is another Pic of My Daughter Nicole and her brother .These two are extremely close (they do fight don’t get me wrong) but that out of the way how truly close they are.
A sibling of a child with a chronic illness do suffer in some degree, the ill child comes first at many times, hospital admissions, appointments. "No we cant do that Matthew is not well". Nicole has never complained I wish sometimes there was something for siblings for their undying love and support. I Love you Nicole you are a very giving, a loving daughter and sister you are amazing beautiful spirit. I'm so proud of both my children make the most of your children and loved ones.




38 comments:

Ava said...

Jen: My heart goes out to you and your family. My sister has a 19 yr old son with special needs. Her younger daughter is having a hard time being the 3rd child and not getting the attention from her mom. If you haven't read the book, "The secret" by Rhonda Byrne, try to get it from the library. This might help a little. Wishing you improvements each day forward!
ava, cottagerca

Deb said...

They are so beautiful... your Mum would be so proud!! Sending major hugs to you all - xox

Sam Marshall said...

So glad your son got a new computer. Both your children look like great kids!
They teach us so much.
XXX

Gail said...

Jen you write so well about this terrible condition and what your darling son must go through, my heart goes out to you and all your family. What a great time for him receive his wish, just before Christmas and school holidays.

My love to everyone for Christmas and New Year.

azirca said...

Oh Jen, my eyes are brimming with tears as I read this. I know how heartbreaking it is for you having to watch Matthew go through this and how difficult daily life can be for him. He is so very blessed to have such a strong and loving family who support him every step of the way no matter how difficult those steps are.

I am so thrilled for Matthew that his wish was granted, he looks rather happy about it too. Blimey!...that is a HUGE screen, you can tell him that I have screen envy!

I adore the photo of Nicole and Matthew. What beautiful children, you have every right to be so very proud of them both.
*hugs*
xo

Linda Lynch said...

Jen, I attribute how wonderful your children are to you and Mark and the love that they have been given. Matthew and Nicole have beautiful spirits and are lovely children. God is looking over your family and I am so happy that Matthew received this incredible computer, he deserves it.

Lisa Cook said...

Thank you for sharing such a personal story from your family life. Your son sounds like a trooper and he is lucky to have such a wonderful family surrounding him. Being a parent is such a challenge and you have more than your share. I am so glad that your son has such a wonderful computer to give him such joy. I wish you all a wonderful holiday season and a bright and hopeful new year!

Linda Cain said...

What a courageous young man! He should be an example to us all!
Bless you and yours this Holiday Season.
Your Friend in ART,
Linda

Jo Wholohan said...

what a wonderful suprise just in time for christmas, love to you all for the season xx

Ro Bruhn said...

What a wonderful surprise for Matthew, he's one very courageous boy, we can all learn from these special children and what a lovely sister he has too. They are both lucky to have you as their Mum.
On another note maybe you should take a quick look at Bevlea Ross's blog, can't wait.

michelle ward said...

Jen - I am cheering way over here that Matthew's wish was granted. A simple and humble request in the scheme of things, and I'm sure it boosts the spirit in all of you to be recognized for the courageous soldiers you are. Having a son with autism I know what a privilege it is to be his parent - we have learned many life lessons. I'll bet you feel the same way. Matthew sounds like a beautiful soul....he learned that from you. Thanks for sharing this personal story.

Judy said...

Ay lassie, I knew you were father Charistmas, after all. And what a screen! Takes a wonderful mum and dad to make great kids despite the hardship you all go through. I take my hat off to you!

May all your wishes come true, now and always.
i tried phonong you yesterday.
xo

SarahD said...

Jen this post had my eyes welling up, how wonderful for Matthew I know how poorly he has been. the photos of your two children reminds me of the special bond i have with my brother. Love and hugs to you my friend Sarah xx

Kim said...

Well ,I puckered up a bit too :(. But it made me smile to see his while sitting in front of his new computer , and thinking how full your heart must be. That's good stuff , and thanks for sharing a little of your life. I wish you all the Best of Christmas's.
Kim

Jorja said...
This comment has been removed by the author.
Jorja said...

Matthew's wish could not have come true at a better time for him being so close to Christmas. You are one proud and special mum for sure....xo Jorja

The Stamping Queen said...

Jen,
Your children draw their strength from their parents - you and hubby are doing a wonderful job!
Congrats to Matthew on an amazing wish come true.
Such a deserving family.
All the very best for a wonderful Christmas and New Year.
~xx Barb xx~

Sarah said...

Look at Matthews grin, its as big as that screen..LOL He so deserves it, he is one inspirational boy. As is your beautiful daughter Nicole.. She must take after her mumma. I bet Matthew is glad school is almost out for the year so he can play and play and play on his new computer. Will phone you this week.

franswazz said...

Friend, today I said a prayer for your son, for you and for all the family
may God bless
A very Peaceful Merry Christmas!

Jo said...

Hi Jen...Matthew & Nicole are gorgeous...(I have a Matthew too):) Matthew's smile is just as spectacular as yours.
Pretty awesome computer from the foundation!!! "Make A Wish" are just the best.
It's all in a wish :) and I'm sending all my best wishes to you and your family...Jo xx

kelsey said...

How wonderful for Matthew Jen! I thought I was looking at a big-screen tv and had to re-read that you said it was his computer! Wow, what a gift and so very deserving he is too! Lovely pic of your two "babies", don't worry, that part never changes...they'll always be your babies. ;-)
Big hugs from over the long road.

oldflowers4me said...

OH MY DEAR FRIEND-YOUR YOUNG SONS WISH DID COME TRUE.......

Julie H said...

Jen my heart goes out to you all. I used to volunteer with a young man who needed his lungs cleared several times a day and understand a little. Big hugs toyou both.

Jacky said...

What a beautiful and heartfelt post Jen AND what gorgeous children you have.
Such a wonderful thing that "make a wish" have done for Matthew. His new computer set up looks amazing!!

Inka said...

What an amazing children! I am sure they make you so proud. Make a wish is such a wonderful organization and no one deserves their recognition more than Matthew. There needs to be an organization for the parents behind these amazing children also. To say that it takes a enormous task to support a chronically ill child is such an understatement and something that can only be a manifestation of a great love. I wish you and your family the most amazingly wonderful Christmas!

Giddy Girl said...

Hi Jen,
Isn't it funny how the world turns? I liked your post at tim Holtz site so I clicked on your link and it brought me to someone who understands....
www.caringbridge.org/visit/madiganclairegow
Madigan's spine is collapsing, but what that child can do and endures just amazes me. She will be granted a "Make A Wish" a few days after Christmas to Disney's Animal Kingdom and we all get to go. Look at the smile on your sons face...isn't pure joy in your heart!!
I have 2 older children 15 & 13 and they do try to understand.... but you're right the sick child comes first much of the time.
Thanks for bringing some light into my day and I will be a constant follower now.
Great album by the way...
Merry Christmas to you and your BEAUTIFUL family,
Valerie

Julie van Oosten said...

Jen, you have such fantastic, wonderful children, they are because you are so special, kind and such a loving mum. I am so glad Matthew has his wish and he looks so happy in the photo. He is so brave to go through everything that has been delt with in life, you must be so proud of him and Nicole for her amazing strength and support for her brother. I remember seeing Matthew 18 months ago and he looks like he has really put on heaps of weight and looks fantastic in the photo. The computer looks so amazing. I know it is one mega computer with terabytes of storage, 4 superfast processors, tons of RAM, game/graphics cards etc and that cool screen you can see from Perth...Now all he needs is Iphone for christmas....!

Trash-2-Treazure said...

Hello Jen,
I was reading your heart warming account of your sons illness and I was compelled to comment back to you. As a mother to two sons I truly know how we would gladly take the sickness and the pain for them. No matter how old they get we still worry about them endlessly. But your son sounds like he has a great attitude. I wanted to give you and your family a hope that I have learned because I too have a wish to see loved ones that are now gone and I also have a husband who suffers from diabetes and is now on two shots a day. I learned that the Bible says that God is going to wipe out sickness and death at Revelation 21:4-"He will wipe out every tear from their eyes, and death will be no mor, neither will mourning nor outcry nor pain be anymore." He also tells us in the book of Isiah 33:24 that "No resident will say:'I am sick'" These are just two scriptures that I hold on to that encourage me. And I look forward to the time when I can see these things actually happen. If you would like some more encouragement I would be glad to share with you. I will pray for your family and I also enjoyed your blog. Sincerely,
Donna Horn

~*~Patty Szymkowicz said...

Your son and daughter are so beautiful...there really are no words to express what's in my heart...here is my favorite blessing, sending it to you and yours dear Jen:
May the long time sun shine upon you
All Love surround you
and the pure Light within you
guide your way on
ooxooo

Pam Warden Art said...

I am here in a round about way from the blog that Tim Holtz has... My husband was a Firefighter and developed lung disease. 3 years ago he had a right lung transplant at UW Madison in Wisconsin. Your family is in our prayers. Please tell your son that we said Hello :) We pray for a miracle and a cure.
Blessings and Merry Christmas,
Pam

Kim Logan said...

goodness Jen, I had no idea, what a marvelous Mum you are, and a wonderful sister your son has. I hope you all have a fabulous Christmas and Matthew enjoys that computer.
Kim
x

Nancy said...

Merry Christmas to you and your family. I found your blog through a link on Tim Holtz's page. Your work is inspiring and it seems as if you have raised 2 wonderful children too:)
Nancy

ANNETTE HUSBAND said...

HI jen
what an amazing family you have...straight from amazing parents too.I'm so glad they granted Matthew's wish.Nicole and him look like two peas in a pod side by side.I too thought it was a large TV like Kelsey LOL...I haven't got used to large screens yet.Thanks for sharing you and your families life :o)
hugs
Annette

J and Z said...

oh jen, my niece has two daughters with CF and so you have support here and your son sounds like a lovely lad...

thank you for visiting my blog too! your book pages are wonderful!

Tumble Fish Studio said...

Wow - as I write through the tears in my eyes - what a touching story. Maybe the tears are streaming because I have just a taste of what you're going through, not near as much but a small taste. I just wrote about my son a few days ago. He just turned 17. He has had quite a life of problems but nothing to compare to. If you'd like to read my post it is at http://tumblefishstudio.blogspot.com/2009/01/kawasaki-syndrome-and-other-things.html. If your son likes online computer games, maybe they could meet online and be over the seas friends. I will think of you often, and make many more good wishes for you.
Marsha

Christine said...

Loooove the photos of your children - esp. that last one!

....my daughter's name is Nicole, too -- good name...;)

Kell said...

I just clicked on the link from Tim Holtz's blog to yours. I was scrolling down, looking at your beautiful creations, and came across the photo of the Creon! My 8 year old daughter has CF also. Would love to chat!

Indie said...

Your son is an inspiration for his good attitude toward his illness!

My 15-year-old son had an accident this year and nearly lost his eye. He had 3 surgeries in 2008 and has chronic pain, and greatly reduced vision. I think the psychological side of it has been the hardest part.

I completely know what you mean by that last line, "make the most of your children and loved ones." Out in public I often overhear parents being scornful or impatient with their kids, and I want to tell them, "treasure your children and the time you have with them! They grow up and move on."

I wish all the best for your family, your strong-spirited son and your generous-hearted daughter. Thank you for your post.