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jennifergg Senior Member
Joined: 21 Jun 2006
Last Visit: 23 Aug 2010 Posts: 405 Location: Montana
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Posted: January 29 2009, 10:11 AM Post subject: ROAD MAP: What would you tell new parents?
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Road Map to Holland begins with confusion, and ends with a very clear statement, "He is my son." In recording my journey between these two points, I'd hoped to leave a record for some other mother, another family, of what I did right, and what I did wrong. I wanted to help make the path a little smoother, and I know many other parents of kids with DS feel this way, too.
What advice would you share with new parents? What's the most important thing you've learned in your journey?
_________________ Jennifer Graf Groneberg
Last edited by jennifergg on January 29 2009, 5:29 PM; edited 1 time in total |
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Abigail'sMom Super Member
Joined: 01 Apr 2005
Last Visit: 14 Sep 2010 Posts: 4973 Location: Dublin, Ohio
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Posted: January 29 2009, 12:17 PM Post subject:
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After Abby's birth, I took time to adjust to the diagnosis. As many know I sought out therapy to help me understand my emotions and to get a better handle of why I did what I did.
The one statement that came out of those sessions that still sticks with me today is... "Abby doesn't 'need' me, but it is I who 'need' her in my life".
She changed me in so many ways, all for the positive. She made our marriage stronger, she made me a better person, a more accepting person, she taught me to love like I never knew one could. It took time to learn this. But once I began to understand myself and how my life expierences up to her birth had shaped me and how she is currently shaping me has made her 'priceless'.
So I guess, for a new parent, I would first hug them and congratulate them on their baby. Secondly I would tell them that they are a baby first and that Ds doesn't define them. And then I would tell them that "Abby doesn't 'need' me , but it is I who 'need' her in my life."
_________________ Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06), Katie (08/12/08.)
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Shelley Senior Member
Joined: 18 Jan 2007
Last Visit: 17 Sep 2010 Posts: 114 Location: Australia
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Posted: February 01 2009, 7:13 AM Post subject:
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The biggest understatement tha ti ever heard (that reassured me so much at the time) was: You'll be fine. That wonderful man got it wrong - we didn't just 'cope' and be fine - we THRIVED. We loved it - this amazing journey that was only really made available to us thorugh Han's diagnosis of DS>
_________________
Mum to Hannah (ds) and Kit 15/10 /04
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jennifergg Senior Member
Joined: 21 Jun 2006
Last Visit: 23 Aug 2010 Posts: 405 Location: Montana
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Posted: February 01 2009, 10:05 AM Post subject:
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In Road Map to Holland, I write about many emotions, some of them contradictory: fear, doubt, sadness, joy, excitement, pride. I'd want new parents to know that it's okay (even natural) to feel all these things, and that just because you begin this way, doesn't mean you'll end this way.
Too, I would encourage new parents to find good outlets and safe ways of processing these feelings. For some, it will be talking about them with family and friends. For others, it will be a religious advisor, priest, or minister. And too, professional help is important to keep in mind. If you need to speak to a doctor or therapist, I don't think there should be any stigma attached to doing what's best for you and your family.
xo
_________________ Jennifer Graf Groneberg
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DanielsMommy Super Member
Joined: 18 Sep 2005
Last Visit: 19 Sep 2010 Posts: 4350 Location: Rhode Island
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Posted: February 02 2009, 2:45 PM Post subject:
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I would want new parents to know that their child isn't just Down Syndrome. My son is SO much more than his extra #21. He's really funny, playful...he looks SO much like my brothers, he knows when you need a hug or kiss, he is SMART really SMART. He can work a crowd!!
His diagnosis isn't what defines him. Sure, it's a significant part of him.....he's educated differently, he shares in some physical qualities associated with Ds....but above all, and most importantly...he's just Daniel. I used to think Ds would be first thing on my mind in the morning....and last thing on my mind before bed. But honestly, it isn't. I'd like new parents to know that life goes on....and believe it or not....it gets BETTER .
I can't imagine Daniel any different. He is perfect...the way God intended for him to be.
_________________
Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.
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Renee Lacey's mom Super Moderator
Joined: 16 Oct 2005
Last Visit: 17 Dec 2009 Posts: 5929 Location: Gloster, Louisiana
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Posted: February 02 2009, 2:51 PM Post subject:
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I would want them to know that Lacey is a beautiful, smart, and remarkable little girl who HAPPENS to have DS. DS doesn't mean your child won't achieve those goals you had set in your mind when you thought your were having a "normal" baby. Life is full of surprises and this is one of them. Make it the best surprise you have ever recieved~
_________________ Renee~~ mom to Haley 10,Kassidy 8, & Lacey(DS) 4 & wife to Chris!!
* An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*
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MommyAngela Senior Member
Joined: 28 Apr 2008
Last Visit: 18 Sep 2010 Posts: 478
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Posted: February 04 2009, 9:16 PM Post subject:
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It's okay to be sad.
Deal with this in your OWN way.
It's okay to mourn the loss of the child you thought you would have.
You need a person or a group (for me it was my husband and my mother) to be your sounding board. Where you can feel free to say WHATEVER you want and whatever you are feeling. Even if it's horrible. It helps to let it all out.
IT WILL NOT ALWAYS BE THIS HARD.
_________________
Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10
www.theamicks-angela.blogspot.com
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Vinnie's Mom Senior Member
Joined: 20 Feb 2008
Last Visit: 04 Mar 2010 Posts: 939 Location: Westfield, MA
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Posted: February 04 2009, 10:05 PM Post subject:
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[quote="DanielsMommy"]I used to think Ds would be first thing on my mind in the morning....and last thing on my mind before bed. But honestly, it isn't. quote]
I will NEVER forget coming here in the first couple months and reading a post that said this. I thought YEAH RIGHT that is ALL I see and think. Boy was I wrong!
_________________ Joanne, wife to Jayson, mom to Rudy (12/27/05) and Vinnie (2/6/08 Ds)
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nancyreader Senior Member
Joined: 01 Dec 2006
Last Visit: 18 Nov 2009 Posts: 183 Location: New Jersey
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Posted: February 19 2009, 11:45 AM Post subject:
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I choose to help parents with a prenatal diagnosis because I felt so isolated in pregnancy post-diagnosis. The more time I spend with these moms, the more I understand (and remember) what exactly is needed. Roadmap explores the negative - often contradictory- emotions. I think this is the biggest thing newly diagnosed parents need - validation of that swirl of emotions - it's OK, it's natural. And they need hope: the feelings you have now do NOT resemble what life is like later. And of course the tons of practical questions we deal with about prenatal care, birth, nursing, risks, medical concerns, etc.
_________________ Nancy, mom to
Samantha (12)
Maria (9)
Elena(7)
Gabriella (4) (DS & repaired AVSD)
Our story: GIFTS - page 130
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randy&family New Member
Joined: 03 Jan 2009
Last Visit: 27 Oct 2009 Posts: 16 Location: West Virginia
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Posted: April 26 2009, 7:12 PM Post subject:
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My li'l guy isn't out just yet but I would tell folks to ask every single question that comes to mind.
My wife and I found out through an amnio months ago and I haven't stopped asking questions since. And don't be afraid to ask questions you think are stupid.
The worst that can happen is that the doc will give you a "you're using a shotgun to kill a fly" look...like the one I got when I asked if he would need a heart transplant to fix a narrow artery...
Or you will ask the doc about "soil formula"...I swear I had that question said right in my head before I asked. (soy formula)
so, yeah, ASK ASK ASK
_________________
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jennifergg Senior Member
Joined: 21 Jun 2006
Last Visit: 23 Aug 2010 Posts: 405 Location: Montana
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Posted: April 26 2009, 7:24 PM Post subject:
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Beautiful images, Randy, and excellent advice, as well! I love "soil formula!"
I hope you got good answers to these and other questions (no to the transplant, and maybe to the soil formula, but babies with DS are much like other babies, so if you have had other babies, then what worked for them will likely be a good starting place for your new one. And? If you don't have other babies at home, well this is an excellent place to ask ask ask all those questions, you'll get wonderful, experienced responses.)
Best of luck to you and your new addition!
xo
_________________ Jennifer Graf Groneberg
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