The one thing I have learned about babies with DW is that NEVER is a word which should NEVER be listened to. The human spirit, the power of love and the real power of heartfelt prayer is something that just cannot be measured on an ultrasound machine.
On 23rd November 2009 the routine ultrasound scan of our 20week old unborn daughter showed up some serious anomalies. Shortly afterward I began this blog so that no matter what happened our little baby would have an impact however short or long her life may be...this is Louise Mary's story...
Monday, August 20, 2012
A Is For Apple..Ap..Ap..Apple.
I just thought I'd upload this cute little clip of Louise doing the alphabet along with a YouTube site. Considering that speech is one of the things often affected by Dandy-Walker, this might give parents of recently diagnosed children some hope that lots of children with this condition do well and defy predictions in so many areas.
The one thing I have learned about babies with DW is that NEVER is a word which should NEVER be listened to. The human spirit, the power of love and the real power of heartfelt prayer is something that just cannot be measured on an ultrasound machine.
The one thing I have learned about babies with DW is that NEVER is a word which should NEVER be listened to. The human spirit, the power of love and the real power of heartfelt prayer is something that just cannot be measured on an ultrasound machine.
Wednesday, July 18, 2012
Love Songs For Louise ♥
This week Hallie Lord is hosting the lovely idea of a Love Song Link-Up over at her super blog Betty Beguiles. I'm running a bit late with it as it's been going for a few days now...pop over there and check out the romance fest in the other blogs. I've been listening to some of the love songs, a lot of which are new to me and I can't wait to check out more later. Even nicer because my Wedding Anniversary is today!!
The love songs that mean the world to me are not about John. They are not about him, they are about someone else who slipped into our lives in secret. They are not about him but they are about the times when I have felt closest to him and when I realised just how great a treasure I have found in him. Marriage has lots of moments of intimacy, both personal and physical which are for that couple, not to be shared but to be treasured privately. There are other moments which can do good, maybe even great good by being told. These moments of intimacy I have already shared here.
I can quite honestly say that I have never felt so close and bonded to my husband as when sitting in a darkened room peering at an ultrasound screen, looking for signs of hope. I have never felt so close to him as walking beside him out of an operating theatre having just handed over a very unwell two week old. Or the time when a doctor told us she wouldn't be considered for a donor heart and John said she could have his, and I knew he meant it.
The songs I've chosen aren't about John but he is the one who carried us all through to the backtrack of these beautiful songs...each of which I applied at different times and usually with tears to our little girl Louise.
We hadn't thought another little child would ever join our family and make it and those first few months were filled with the fear of another loss...
We were given a guarded prognosis...which means...prepare for anything...even death..
Long before she was born...it would have taken a lot more than wild horses to drag us away...this song played across the airways that Christmas...
This song came on the radio when we were driving home during her first operation at 2 weeks old...a message to her surgeons, Baby, she's adorable...handle her with care...
The only time I ever asked 'Why Me?' My lowest moment...I posted this song on Facebook that afternoon.
'If I had words to make a day for you...I would make this day last for all time...'
It was only in retrospect that I saw that what had just happened to us was a great gift...
So, Louise, we love you. You'll never walk alone, we're here and we're here to stay...
And this one because our great gift has brought us so much joy...
The love songs that mean the world to me are not about John. They are not about him, they are about someone else who slipped into our lives in secret. They are not about him but they are about the times when I have felt closest to him and when I realised just how great a treasure I have found in him. Marriage has lots of moments of intimacy, both personal and physical which are for that couple, not to be shared but to be treasured privately. There are other moments which can do good, maybe even great good by being told. These moments of intimacy I have already shared here.
I can quite honestly say that I have never felt so close and bonded to my husband as when sitting in a darkened room peering at an ultrasound screen, looking for signs of hope. I have never felt so close to him as walking beside him out of an operating theatre having just handed over a very unwell two week old. Or the time when a doctor told us she wouldn't be considered for a donor heart and John said she could have his, and I knew he meant it.
The songs I've chosen aren't about John but he is the one who carried us all through to the backtrack of these beautiful songs...each of which I applied at different times and usually with tears to our little girl Louise.
So...Beautiful Louise: These are my songs for you.
We had just holidayed in France. I felt like a cloud was hanging over me that holiday, I just didn't feel right. When Louise was diagnosed with problems I figured that's what it had been...the marking point of the end of life as I'd known it. That was until John reminded me that God doesn't send 'omens' of a little child who needs our help and don't be so superstitious. (You can see how he makes up the difference of all I'm not lol) I didn't know until the last day that I was brewing Swine Flu-John's first case in the epidemic which followed. Unknownst to us, Louise came home from that holiday with us...an answer to her siblings earnest (and secret) prayers.
We were given a guarded prognosis...which means...prepare for anything...even death..
Long before she was born...it would have taken a lot more than wild horses to drag us away...this song played across the airways that Christmas...
This song came on the radio when we were driving home during her first operation at 2 weeks old...a message to her surgeons, Baby, she's adorable...handle her with care...
The only time I ever asked 'Why Me?' My lowest moment...I posted this song on Facebook that afternoon.
'If I had words to make a day for you...I would make this day last for all time...'
It was only in retrospect that I saw that what had just happened to us was a great gift...
So, Louise, we love you. You'll never walk alone, we're here and we're here to stay...
And this one because our great gift has brought us so much joy...
Friday, July 6, 2012
Fontan Operation Minute By Minute
This is the operation Louise will be having done next summer. The little girl, Emily, is the age Louise will be and has already had the same two cardiac surgeries as Louise. I'm not 100% sure whether it was the wisest thing I've ever done to look at this. On the other hand, these pictures are testimony to just how skilled and utterly amazing these doctors are. We are so blessed to be able to access these skills for Louise. This operation took place only yesterday so send some prayers Brave Little Emily's way.
Saturday, June 2, 2012
Meeting The Wiggles-More Than They Are.
I have loved The Wiggles for many years, ever since our eldest two children, now 16 and 14, were tots. They were always the one children's programme, apart from the Canadian programme, Elephant Show, which didn't make me want to take a rocket launcher to the television. Four (quite handsome) guys who were real musicians, didn't try and act like children or talk in some sort of artificial way to them. Any children on their shows looked and acted like real children and not like over-performing stage school clones. The music was catchy and pleasing to the ear. Did I mention they were quite handsome?? Oh yes, I mentioned that...
I've always been a bit of a recreational crier.(You know the sort of thing...movies, songs..anything else you can think of...though real tears are not unknown to me either, as this blog can testify to). Probably more so since I've had little people passing through my life to the strains of Rock-A-Bye-Your-Bear, like the transient little boy in Puff The Magic Dragon. The days blend into weeks, into months, into years...
Dragons live forever...but not so little boys...or little girls...(I'm making myself cry here) and next thing you have a bunch of mini-adults occupying the beds you used to visit at night to tuck in cute little toes. The amateur adults are precious too and we love them. But they're not that interested in choosing a Wiggles DVD to put on to watch.
By the time Louise came along, Peter was six and all the Wiggles VCR tapes had been tucked away to the back of the cupboard. I hadn't passed them onto the charity shop along with most of the other tapes as they were categorised as sentimental value. We had seen them in concert when Peter was three only to discover to my dismay that velvet-voiced Greg had had to retire due to illness. Much to John's amusement I spent the whole next day in tears watching YouTube tributes to The Yellow Wiggle! You see they were the soundtrack of my babies childhood.
In the meantime, I had also learned the piano because the instrumental piece 'Music Box Dancer' came on the radio one day. It's the piece Dorothy (the dinosaur) does her ballet to and I'd never known the name of the music. Looking it up (tearfully pondering the breakneck speed of the baby years) on YouTube I stumbled on Web Piano Teacher which demonstrated a completely new method of teaching piano to adults who cannot read music. One of my greatest regrets had always been my inability to even play chopsticks. A few months later I had Music Box Dancer, Chariots of Fire, Fur Elise, Lean on Me and a few other pieces under my belt.
So one winter's evening some years later, in order to settle a fractious a little toddler girl, I rummaged to the back of the cupboard and found a video which was still playable on our barely functioning video machine. Louise, who had never been much enamoured by television at all, was immediately enchanted. Peeping into the room later on I spotted SIX children glued to the TV, and Dad standing in the doorway, also enjoying the music...The Wiggles were back in the family!!
I sent off for replacement DVDs and a few we didn't have already, carefully choosing only the Greg ones. It just didn't seem right to cast him off.
This spring when I spotted that The Wiggles were coming to Ireland and that GREG was back, there was no question of not bringing Louise. For good measure I got tickets for all the family, figuring that they all clearly love them and could use Louise as cover. I was looking at their website reading about Greg's return when I had the notion of sending them a daring little request...a shot in the dark so to speak...
Months went by and I figured my e-mail had been just one of the hundreds they receive every day.
Then out of the blue this appeared in my inbox:
I've always been a bit of a recreational crier.(You know the sort of thing...movies, songs..anything else you can think of...though real tears are not unknown to me either, as this blog can testify to). Probably more so since I've had little people passing through my life to the strains of Rock-A-Bye-Your-Bear, like the transient little boy in Puff The Magic Dragon. The days blend into weeks, into months, into years...
Dragons live forever...but not so little boys...or little girls...(I'm making myself cry here) and next thing you have a bunch of mini-adults occupying the beds you used to visit at night to tuck in cute little toes. The amateur adults are precious too and we love them. But they're not that interested in choosing a Wiggles DVD to put on to watch.
By the time Louise came along, Peter was six and all the Wiggles VCR tapes had been tucked away to the back of the cupboard. I hadn't passed them onto the charity shop along with most of the other tapes as they were categorised as sentimental value. We had seen them in concert when Peter was three only to discover to my dismay that velvet-voiced Greg had had to retire due to illness. Much to John's amusement I spent the whole next day in tears watching YouTube tributes to The Yellow Wiggle! You see they were the soundtrack of my babies childhood.
In the meantime, I had also learned the piano because the instrumental piece 'Music Box Dancer' came on the radio one day. It's the piece Dorothy (the dinosaur) does her ballet to and I'd never known the name of the music. Looking it up (tearfully pondering the breakneck speed of the baby years) on YouTube I stumbled on Web Piano Teacher which demonstrated a completely new method of teaching piano to adults who cannot read music. One of my greatest regrets had always been my inability to even play chopsticks. A few months later I had Music Box Dancer, Chariots of Fire, Fur Elise, Lean on Me and a few other pieces under my belt.
So one winter's evening some years later, in order to settle a fractious a little toddler girl, I rummaged to the back of the cupboard and found a video which was still playable on our barely functioning video machine. Louise, who had never been much enamoured by television at all, was immediately enchanted. Peeping into the room later on I spotted SIX children glued to the TV, and Dad standing in the doorway, also enjoying the music...The Wiggles were back in the family!!
I sent off for replacement DVDs and a few we didn't have already, carefully choosing only the Greg ones. It just didn't seem right to cast him off.
This spring when I spotted that The Wiggles were coming to Ireland and that GREG was back, there was no question of not bringing Louise. For good measure I got tickets for all the family, figuring that they all clearly love them and could use Louise as cover. I was looking at their website reading about Greg's return when I had the notion of sending them a daring little request...a shot in the dark so to speak...
I sent this e-mail:
I am just sticking my neck out to enquire whether there would be ANY possibility of a very special little girl who will be 2 1/2 when we bring her to the concert in June (along with her 5 siblings who will be using her as an excuse to go) to even have a brief meeting with The Wiggles. Before Louise was born we were told she may not live as she basically has half a functioning heart and she has had two major cardiac surgeries so far with another one due next year. We were also told that should she live she would be unable to walk or talk and probably also have learning and feeding difficulties. She has defied all predictions and in spite of a rare brain malformation (Dandy-Walker) she is like any typical child (from the outside). Her little half heart is more loving and joyful than many of those of us who have it all going for us.
Anyway, even though she is so young, I think it would be difficult to find a child in Ireland more dedicated to The Wiggles. I originally showed her our old VHS tapes which I had bought for her oldest sisters now 15 & 14 and she was immediately smitten. When she wakes during the night it's Dooorrateeee we hear her calling for. The girls have taught her all the dances and they are doing her a world of good. I would be forever grateful if a little meeting could be arranged. However I am aware that you probably get lots of requests like this and will fully understand if it would not be possible. Would it make a difference if I told you that Louise's Mommy (Me) spent an entire day in tears when Greg retired, much to my husband's amusement! (it was because you were such a big part of my children's childhoods) Well I hope you at least consider my request, Louise will win your heart if you meet her.
Anyway, even though she is so young, I think it would be difficult to find a child in Ireland more dedicated to The Wiggles. I originally showed her our old VHS tapes which I had bought for her oldest sisters now 15 & 14 and she was immediately smitten. When she wakes during the night it's Dooorrateeee we hear her calling for. The girls have taught her all the dances and they are doing her a world of good. I would be forever grateful if a little meeting could be arranged. However I am aware that you probably get lots of requests like this and will fully understand if it would not be possible. Would it make a difference if I told you that Louise's Mommy (Me) spent an entire day in tears when Greg retired, much to my husband's amusement! (it was because you were such a big part of my children's childhoods) Well I hope you at least consider my request, Louise will win your heart if you meet her.
Affectionately,
Jennifer Kehoe.
Months went by and I figured my e-mail had been just one of the hundreds they receive every day.
Then out of the blue this appeared in my inbox:
Hin Jennifer
Thanks for your email. Sounds like Louise is a little battler as they would say in Australia. We are so glad of the positive impact we are are having in your life. We are happy to add you to the meet and greet.
How many tickets did you get?
Confirming you have tickets for the Saturday 2nd June 11am?
Let me know and I will send a voucher so you can attend the meet and greet.
Cheers
So today, after all these years, this happened:
I think my face just about says it all.
Murray, Greg and Jeff are retiring from The Wiggles at the end of this year. This is their farewell tour. There were tears in my eyes as they waved goodbye. Goodbye Wiggles. Goodbye little babies from my family. Thank you for meeting us. Thank you for the happiness you have brought our home. Thank you for being more than you are.
Goodbye, Good Luck, God Bless.
Sunday, May 20, 2012
Please Share This Far & Wide
This is a beautiful composite movie of a number of children with Dandy-Walker Syndrome. It demonstrates just how special and precious each one is. Practically nobody knows what Dandy-Walker is until they receive a diagnosis for their child and are faced with the unknown. The more the faces of Dandy Walker are made visible, the more babies will be given the chance to show the world just how special they are and how much they can offer this world. Louise has added to our lives more than ever could be described or imagined and we would not change a single cell of her body if we were given a chance. (though we would probably fix her heart...we are depending on the amazing doctors and scientists of this world to do that.) Please feel free to share this video and to tell Louise's story to anybody who is willing and who has ears to hear.
Tuesday, May 1, 2012
Leinster Leader Article
The regional newspaper The Leinster Leader did a short piece this week about Louise and our fundraising effort for Babyheart.org It's not available on the website yet but here's a scanned in version:
Please message me on the listed mobile number (or leave a message here) if you would like to know how you can donate. I am hoping we will be able to raise enough to cover the surgery for one child in the Developing World. Of course, more than that would be greatly welcome.
Jennifer xx
Jennifer xx
Tuesday, April 10, 2012
Planning Lifelong Care
Here's an interesting video I came across on YouTube. It hits home that it's not necessarily going to be all plain sailing for the future. Thank God for doctors and scientists like these guys and a little reminder to pray for (and fund) them.
I love what he calls people like Louise who have single ventricle circulation:
"These very special human beings...who have...really never walked the face of the earth before..."
I agree with him-very, very special.
In the meantime, we're still waiting for a date for Louise's MRA.
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