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  #1  
December 7th, 2008, 12:51 AM
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Join Date: Aug 2006
Location: Sydney
Posts: 135
Dear all

It has been ages since the last time I posted anything. At least 12 months, I think. Well, all I can say is that 2008 has been a busy and difficult year and I am glad that it is nearly over.

The good news first. Daniel is doing ok, all things considered. By "all things" read several long hospitalisations, countless doctor visits and two heart operations (the last one about 6 weeks ago). By now, Daniel's medical history is rather long and complicated but in a nutshell he has type of congenital heart disease sometimes called TOF (tetralogy of fallot), which is a short way of saying that there are lots of anatomical things wrong with his heart. On top of that, he has been diagnosed with a genetic disorder called 22q deletion. The heart thing is fixable, the genetic disorder is not - but that is fine with me because, at the end of the day, it is the heart defect that could kill him (screwed up DNA would not).

As you can imagine, there are good and bad days. On a good day I keep reminding myself that we are lucky because only 10 years ago children with Daniel's condition could not be helped and just died. On bad days I really would like to be able to murder somebody, you know, just to get the anger out of the system. A lot of the time I am just sad, tired and overwhelmed - but you do what you have to do and just push along regardless. So, I have this odd feeling of my life being split into two: there is the part of my life that is dominated by Daniel's health (and the fear and crap that comes with it) and there is the part where we just live life like nothing is happening, you know, where I say (and genuinely believe) that all is ok, that we are coping just fine because the odd heart operation to your child is just part of "normal" life.

Meanwhile, Daniel is a delightful child. He is a bit behind in his development (he is not walking or talking yet) and a bit small for his age - but to us, he is just perfect and we love him to pieces. Despite everything we enjoy parenthood a lot and are even thinking of TTC # 2 (yes, we like to live dangerously!).

I haven't been here for a while but I hope everybody is doing well. I noticed that there are a lot of new names on the board so I imagine there must be a lot more baby "graduates" around. Best wishes to all (and hope to come back more often now).

Take care

Paula






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  #2  
December 7th, 2008, 01:19 AM
beck12's Avatar Platinum Supermommy
Join Date: Jul 2005
Location: Michigan
Posts: 12,330
Paula!!! I am so glad you stopped in to update. It sounds like you have had an exhausting year & it is completely understandable that you have been away so much. I am glad to hear that you are able to compartmentalize some of this & live your life at times like things are normal - because no one can survive living in crisis mode all of the time. I also love that you are thinking of TTC again - as it also shows how strong & hopeful you are. I too am thinking about it & in my situation I think it is tough to decide - I can imagine for you it most likely is even harder..... I will continue to keep you & Danile & Dh in my prayers & hope that when you can - you keep stopping in - we'd love to see you a little more when you have the time.

Much love!!!
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We've begun to raise daughters more like sons... but few have the courage to raise our sons more like our daughters. ~Gloria Steinem

If a man has been his mother's undisputed darling he retains throughout life the triumphant feeling, the confidence in success, which not seldom brings actual success along with it. ~Sigmund Freud
My mom is a neverending song in my heart of comfort, happiness, and being. I may sometimes forget the words but I always remember the tune. ~Graycie Harmon
Don't wait to make your son a great man - make him a great boy. ~Author Unknown
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr.
A man loves his sweetheart the most, his wife the best, but his mother the longest. ~Irish Proverb
Mother's love is peace. It need not be acquired, it need not be deserved. ~Erich Fromm
Children need love, especially when they do not deserve it. - Harold Hulbert
Mother is the name for God in the lips and hearts of little children. ~William Makepeace Thackeray
God could not be everywhere, so he created mothers. ~Jewish Proverb
The best conversations with mothers always take place in silence, when only the heart speaks. ~Carrie Latet




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  #3  
December 7th, 2008, 08:43 AM
esparando para bebé's Avatar Proud Car Seat Technician
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Welcome back, Paula. I'm Augie, Beckie's new co-host. I would love to see you around when you have time. Best of luck in your journeys.
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  #4  
December 10th, 2008, 07:05 PM
Rina42308's Avatar Mega Super Mommy
Join Date: Mar 2005
Location: CA
Posts: 2,991
PAULA!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you so much for coming here and updating us on Daniels' health. I remember you and Daniel VERY vividly and I have prayed for you both. I am so happy to hear that Daniel is such a little fighter and is making it through these trying times. I can not imagine how difficult those "hard days" are that you speak of. If you ever need an ear, please feel free to contact me. I'd love to chat anytime. I have missed you and I hope to see you around more often. Lots of love and prayers continuing to come to you and yours from SoCal.
Love, N~
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  #5  
December 10th, 2008, 11:10 PM
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Join Date: Aug 2006
Location: Sydney
Posts: 135
Thanks a lot for the prayers and the good wishes.

Norina and Beck, I can see that your kids have grown so much! Isn't that amazing (and wonderful)? I am sure you share the feeling that no matter what happens (and a lot can happen!) at the end of the day the love for our children is greater than anything that life can throw at you. For me, just having Daniel around feels like a precious gift. So, glad to see that your little "gifts" are growing up too!

Take care

Paula

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  #6  
December 14th, 2008, 09:45 PM
srs srs is offline
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Join Date: Jan 2006
Posts: 2,421
Glad to see the update. I've been away for awhile too, but I remember you guys. I hope your next year has fewer hard days and more enjoyable ones.
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  #7  
December 15th, 2008, 06:19 PM
Rina42308's Avatar Mega Super Mommy
Join Date: Mar 2005
Location: CA
Posts: 2,991
Daniel is VERY much a gift...I can relate so much to what you said. (((more hugs))) I pray for healing and health for him. What a blessing it is that we have all finally become moms to babies that we can hold...
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Mommy to miracle baby 4/23/08 and four babies in heaven:lost 3/22/05 edd 10/28/05, lost 5/25/05 edd 12/26/05, lost 1/31/06 edd 9/19/06

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -Margaret Mead
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