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Thursday, March 01, 2007

Ellie's Guest Book

I saw my first blogger guestbook here . I love these guys. Look at their picture. They are unbelievably strong and positive and their girls are inspiring. Billie's posts are so thoughtful and her writing is great. That's my shout out give credit where credit is due opener because I am stealing their great idea.

I like the idea of a guest book. A place where chronic lurkers can come and say hello once and frequent commenters can impart words of wisdom on any topic. I appreciate all the great wisdom, advice, and encouragement I have received from so many of you via comments and email. Thanks for all the links and information too.

I will share this blog and this guestbook with Ellie one day - well most of it. So think of this as a place to say hello, that you stopped by, and anything else that may have inspired you in doing so.

Thanks for being here and reading a tale or two.
Ellie, me and Dave at the Dublin Zoo


Lori said...

I'm more than happy to be the first to sign in!

I'm a relative newcomer to this wonderful Blog, but already I find myself wondering what little Ellie and her fantastic Mom are up to today?

Our lives are quite different, we even live on opposite coasts, but I think what we share in common is the reality that this "motherhood" thing didn't quite turn out the way that I'm sure either of us imagined. I am inspired by the way you have embraced the life that has been handed to you. And while it is difficult for me to say that I embrace the reality that two of my children aren't here with me, I do try to embrace the gifts their lives have brought to me. Everyday I seek to find ways to still "mother" them, even if it is something as simple as saying their names. I know that is why I am finding my own Blog so healing. It gives me a chance to include them in my thoughts and conversations just as any mother would.

I am sure your Tales are of enormous help and support to other parents raising beautiful children with special needs. But also know that your writings are educational and thought provoking for an ordinary mother like myself, who cannot walk in your shoes.

- Lori

Mel said...

I'm so grateful that I have stumbled onto your blog. Reading your Tales has inspired me. It's given me fresh ideas and a little more motivation to "keep working" on the little things with my child. Being the mother of a child with special needs is a journey that changes hearts and molds our character. I feel it and I know you do to. Thanks for sharing these Tales with us.

Anonymous said...

hey guys,

Thought I'd better sign this since I'm probably Elle's biggest fan this side of the world.

Loving your work,
Auntie Sue


Billie said...

Thank you so much for the kind words!

I found your blog through Terrible Palsy, and have been reading all of your current posts, as well as trying to catch up on some background when I have the time.

I am amazed by all of your stories about Ellie and am excited to watch her grow and learn. I am inspired by how well you have researched and continue to strive to provide the very best care for her that you can, so that she will be able to reach her fullest potential. She is lucky to have you, and I feel lucky to have "met" you!

Mete said...

Way behind as usual, but I wanted to say hello and add my name to your guestbook. I love reading your updates about Ellie and your unique perspective of things. Keep up the good work!

Marc said...

I'm really glad I've found your guest book. But I want to be more than a guest. I'm a friend Ellie. And I send you and your family my love. I hope to meet you in more than pictures and stories in the near future.

Love Marc and love from my family: Heather, Avery, and Alexandra.

Ariane said...

Hi my name is Ariane. I can't remeber how I stumbeled across your site, probably while searching for blogs about CP. I came across your site about a week ago and have been reading through all your posts, I love your blog and lil Ellie is so precious.

I have a cousin, Aurora, who is 26 years old and has CP. I currently live with and "take care of" her while I am going to Nursing school. We have always been close and I have always tried my best to see the world through her eyes, as a "non-disabled" I know I will never truly be able to acomplish this. She is such a gift and inspiration, having her in my life has taught me so much that I probably never would have learned had she been "normal."

You see unlike Ellie Aurora wasn't a preemie, in fact she was 2 weeks overdue. During birth her chin got caught on my Aunt's pelvic bone causing the cord, which was around her neck, to tighten and cut off oxygento the brain. When she was diagnosed with CP the Dr's told my Aunt to put her in an institution because she would never walk, talk or lead a "normal" life. Now at 26 years old she does indeed walk, yes she walks slow and with a limp but she walks, we use a wheelchair for her when walking long distances because it is too hard for her. She doesn't have much use of her left arm/hand because of the spasicity in it. She uses sign language to comminicate and says some words though people that don't "know" her don't often understand them. Aurora owns her own home and volunteers 3 days a week at various places. She is learning to cook, she can use the microwave for ither microwave meals or warming up leftovers.

Anyway I have rambeled enough but I guess I tell you this story hoping it provides you with some comfort & inspiration. If my Aunt had listened to the so-called experts Aurora wouldn't be as independent as she is today. But with hard work and lots of trials and errors on how to modify things for her she has come so far.

As a last thought I LOVE this poem and think it describes all the "special" children and adluts out there....

Heaven's Special Child

A meeting was held quite far from Earth...
"It's time again for another birth."
Said the Angels to the Lord above,
"This SPECIAL CHILD will need much love."

"Her progress may seem very slow; accomplishments, they may not show. And she"ll require extra care, from the folks she meets way down there."

She may not run or laugh or play.
Her thoughts might seem quite far away.
In many ways she won't adapt, and she'll be known as handicap."

"So let's be careful where she's sent. We want her life to be content.
Please Lord find the parents who, will do a special job for you."

"They will not reaalize right away, the leading roll they're asked to
play. But with this child sent from up above, comes stronger faith
and richer love."

" And soon they'll know the privilege given, in caring for this GIFT FROM HEAVEN. Their precious charge, so meek and mild, is Heaven's Very Special Child."

Author Unknown

Anonymous said...

your child sounds like a such a blessing...i know God only gives us what we can handle and i know God knew no one was up to the challenge of blessing this child like takes someone special to take this on and you must have certain qualities or insight that God would allow you to instill into this beautiful child...

Angela said...

I wanted to sign this ages ago! I can't recall how we became connected -- I'd say through Jacqui's site but I am not sure!

I love, love, love reading about Ellie. She's such a beauty inside and out.

I am glad to have "met" through the blogosphere -- I look forward to your posts and check almost daily!

Anonymous said...

Hello to our wonderfull friends and neighbours! I was reading your blog and thought I would comment.

Give a great big hello to Ellie for us!
Love, Erik, Linda and Erik Jr.

Anonymous said...

I just stumbled upon your blog as I'm in a moment of panic over my son's first experience with Botox. Brayden is four and is the toughest character I have ever known... his mother's hero... and now in his first set of casts is crying with every step he takes and I am at my wits end doing the dance of trying to find help wherever, however...

THANK YOU for sharing Ellie's story and a parent's perspective. I can't tell you what hearing another mom's story means...


BusyLizzyMom said...

I keep meaning to leave a message on your blog. Ellie is a remarkable girl who has come so far. You amaze me with all that you do for Ellie. The knowledge that you have surrounding Ellie's care and needs is astounding.
In between all the stresses that you face with Ellie you still have time and energy to support everyone through our CP group.
I look forward to reading more about Ellie. You are right she does have perfect skin and hair. I'll have to learn more about what you do for Ellie's feeding. I'd love any pointers on how to reduce Elizabeth's reflux and barfing.

Anonymous said...

Dear Friends:
I write from Spain, I have myself a preemie girl, who is now 18 months, whith PVL, and I found your blog searching information for it.
What can I say? Ellie is now part of our lives, she's beautiful, strong,and have amazing parents. Your Blog gave us hope and strengh. I m in tears after watching your video, I remenber our baby in the NICU. At that time I used to think that she will never grown up. And there we are, as Ellie, living a wonderfull life. Thank you for sharing your experience with us! I wish our daughters would met someday and tell each other what a wonderful and happy life they have had.
Whith my best wishes, happy birthday Ellie! From Spain, Marcia.

Anonymous said...

Just watched Ellie's birthday video- what a beautiful child! Happy Birthday Ellie!

Maya Sage said...

I just lost my comment, because I had to do the sign-in process. And as my own nearly five-year-old, Ruby, is now getting restless in her sleep I don't know how much I will be able to type.

I wanted to thank you for your blog, Ryn. For taking the time out of your very busy life to share a bit of your lives. Thank you for each and every thought you have posted about life with Ellie and Dave. You have really inspired me. I have laughed at your more 'woo woo' ideas, because I have those and many more myself; I cried yet another waterfall of tears at Ellie's birthday video and that amazing rendition of 'somewhere' because I sing it to my own special angel. We started our own amazing journey January 5, 2003 in Bangkok,Thailand, where Ruby was born two weeks postdate, delayed delivery, hypoxic eschemia, prediction of and subsequent development of CP> Thank you for sharing your journey, in your lovely, unique way. I just feel so much love for you and your family after reading your blogs. I haven't read the whole blog, because it is 4:25 am and I do have to sleep. I came on one of my late night/wee hours searches for 'healing' for Roo, and perhaps for more healing for myself. I often feel that I am the one being 'healed' here. Ruby may have physical challenges, but she is a happy soul who knows and will openly admit that she is 'perfect'. I, on the other hand, have so much self doubt, fear and sadness....though not nearly so much as before Ruby came in to help me along.

Thank you again, for touching my heart in a powerful way and for being on the planet at the same time. It gives me more strength to walk on!

In love and peace,

Maya and Ruby 'Roo' Sage

Kathryn said...

Thanks to all for your wonderful comments and kind thoughts!

Maya and Ruby Roo Sage - I am really touched by your thoughts for me. Love and peace back to you and your Ruby Roo!

Anthony FitzGerald said...

Greetings form Australia. I stumbled across your blog and was amazed at how closely lives can run in parallel so many miles away. We have three children including twin boys who were born at 29 weeks. One of our boys, James has CP and is going through the whole botox/afo/will he walk thing at the moment. We too have a blog -

Anyway - I get great strength from reading about other families going through the same as us. Amazing. I wish you and your sweet little girl all the best.


Tony FitzGerald

Anonymous said...

Hi my name is Tina and my 5 year old daughter Courtney is about to get the botox and casting, she has Jacobsen Snydrome and CP and I was wanting to know a little about what you and your family are going through..I tried to e-mail you to talk to you but it will not let me, if you could e-mail me, i really need another mom going through this to talk to, my e-mail address is thank you....

Unknown said...

I am deaf and also have multiple sclerosis. One of my daughters has cerebral palsy. Another of my daughers have learning disabilities. I can relate and I mentioned your blog in my blog to let my readers know about this.


Anonymous said...

Dear Kathryn,
I am a loyal reader in London. I only mention the place because I remember you saying you felt like you were meant to live in Great Britain, or that you felt at "home" there. I wish you lived here, too! I love reading about your life with your family and have drawn so much inspiration and motivation from what you share. God bless you and thank you for your blog.

Kate said...

Hello friends, I miss being in touch and just happened to read your most recent posts tonight. Yes, our girls are eight now. I'm grateful for your friendship during those first few years. Love to you all!

Unknown said...

Thank you for being eloquent and blogging about Ellie's triumphs over CP (PVL and Prematurity as well). I found your site by looking up how to fly with my 8 year old Quadriplegic daughter, Julia! The similarities of birth are astounding... Julia was born at 27/5, and weighed in at a hefty 1075g (2lbs 6oz) and was 15 in. She also has a PVL diagnosed at 5 1/2 weeks. She is the oldest of 4 daughters and absolutely loves her sisters.
If you, by any chance, would like to talk with someone with similar experiences, I would love to speak with you. Sometimes, people just don't understand that Julia is an absolutely amazing little girl who just happens to get around by wheelchair instead of by foot.
My email is
and my name is Lisa.

Anonymous said...

Dear Ryn,
Thank you so much for your post of April 8. I have been hoping all of 2011 for an update of your blog. It is great to know that it is just "Life and Moving Forward" which is keeping you from regularly blogging, and I am so happy for your that you are able to complete your Ph.D. I find your writing beautiful and your posts so inspiring. I keep you and your famiy and especially Ellie in my prayers,

Kristin said...

I am so pleased to see how "your" blog has evolved over time. The focus is finally now focused on life's positive journey, new experiences and embracing these moments unfettered by doubt & adult's questioning.

Unknown said...

Hello sweet little girl. You are an absolute gift. I felt very privledged to read your mom's thoughts, hopes and dreams, and it is very obvious that you are the light of her life. I marvel at your tenacity, and how you seem to stare all obstacles in the face! You truly are, as your mom describes, a warrior princess. I guess having said that, the Apple doesnt fall far from the tree. Your mom is remarkable. There are no other words to describe a spirit such as hers.

Please know that since stumbling across this blog, you are now engrained in my thoughts. I will undoubtedly think of you whenever I face some adversity of my own. When I start to feel defeated, I will remember your warrior spirit, and be reminded that a little bit of heart can overcome some of the most difficult challenges.

The world would be a small place without you to occupy it! Wishing you and your family many more days together filled with love, laughter, and the chance to dream.... With the hope that most will be fulfilled!

Kathryn said...

Dear Unknown, Thanks for your kind words. They came when I most needed to hear them.