Comments on: The Ugly Truth

By: tammy

tammy — Sat, 11 Apr 2009 11:53:17 +0000

I really liked your blog! i read 4 others that are on similar subjets, but they domt update very often, thanks.

By: Sherry

Sherry — Tue, 06 Mar 2007 20:11:39 +0000

Hey Jane,

I am Whitney’s friend who spoke to you last week. I enjoyed talking to you Jane!

I think all you’ve wrote about is normal. You are in the middle of a grieving process right now.

There is one thing that was on my heart to tell you, which I didn’t get a chance to share. I was receiving intercessory prayer over this pregnancy and baby when the woman delivered a message I will never forget. She told me that children are a gift from the Lord (Ps 127:3) and God doesn’t give bad gifts. So simple, yet so profound! This truth has changed my perspective of Caden (in addition to my unborn child). Yes, Caden still has the known obstacles of the feeding/swallowing issues, along with other things, BUT God has given me a gift that is precious to Him! It is not about what Caden doesn’t have in the area of chromosomes, what he has been “diagnosed” with, that he looks different, or even about what the doctors say he will or will not be. It is instead about His GRACE and the gift that that God has given me (Ps 139). My God is SO much higher than all these things and I know that He “works all things together for the GOOD of those who love the Lord and are called according to His purpose.” (Rm 8:28)

I pray these words will lift you up. I pray that God surrounds you with His wonderful truth and strength. I pray that you “take every thought captive to the obedience of Christ. (2Cor 10:5)” God’s grace is enough….

My prayers are always with Ramona for the healing and restoring of her whole body. She is a beautiful baby and I’m sure you will find (like in our family) that God will use her to teach you so many things;-)

In Christ

By: Jacqueline DesIsles

Jacqueline DesIsles — Sat, 03 Mar 2007 19:25:33 +0000

my dearest jane,
i don’t know..how could i know, what the future holds for ramona…but i know this to be true..
ramona is God’s idea of love…a child in need of others..vulnerable…pure…lovely…
she is God’s good idea…his dream come true…his love made real for you and andy…
and she will be a princess…that is what she will be…
love,
AJackie

By: Andy Wetzel

Andy Wetzel — Sat, 03 Mar 2007 06:35:55 +0000

Yes, we are all wounded. It hurts. It sucks.

And though it does change with time and grace and kind perspective, the pain of it does not disappear. We can’t avoid it. (God Himself did not avoid it.)

All we have is each other, the relationships to which, in our brokenness, we have been given, and we do our best to be present with you. Not all of us here have faced the threat of suffering or death in our families—but some of us have, and all of us are here, the whole company of the broken. And we hope and trust that nothing, however dark, however cursed, however painful, can separate us from this Love we share.

We are with you. It’s just our presence. It’s not really a lot. But know that it’s here, by the grace of God, and offered freely.

By: Juliet

Juliet — Sat, 03 Mar 2007 01:18:25 +0000

Jane, Aside from being a great mom (and dad), you (and Andy) are great teachers. Your honesty and growing widsom teach and inspire me in so many ways. I feel incomplete…like I’m struggling in some aspect more often than not. I struggle with work, with being a working mom, with dealing with people at work with gianormous egos who seem to me to be spiritually and emotionally incomplete—spiritual incompleteness seems to me to be whole lot worse worse to deal with than genetic incompleteness. I struggle to find patience to deal with these spirituallly incomplete individuals. Most days I just want to find the strength and wisdom to be emotionally complete despite these people and the daily grind. And then I read your blog, and I see how important and deep your struggle is. I am touched and inspired. I hope my big doesn’t look big right now.

By: wyndilee

wyndilee — Sat, 03 Mar 2007 01:09:23 +0000

It is not your fault that she has di goerge syndrome. Izzy was tested for this when her heart defect was found, she was negative but she was later dx with PHACES asocation. They think it is also gentic but it is to new and rare to know much about yet. your daughter is very pretty and she did get her looks from her parents. as she grows she will have many other things from you too and do take pride in them all you seem like wonderful parents. I hope you still glow when poeple dote on her because her are giving her strength and love and that is so improtant! you doing a wonderful job loving your children.

By: Whitney

Whitney — Sat, 03 Mar 2007 00:18:57 +0000

There may be others who are smarter or more pysically agile but when it all comes down, what we can do means nothing if no cares who we are. Most would trade any ability for the knowledge of being unconditonally loved – God’s love. A parents’love. Ramona has a giant head start in this world. She’s going to know and love Jesus, she has TWO parents who love and adore her, and her brother to protect her when mom and dad aren’t around. She is exceptional, she is beautiful and she is blessed.

By: Nancy and Dick Fisher

Nancy and Dick Fisher — Fri, 02 Mar 2007 22:49:39 +0000

Jane and Andy, your strength, honesty, love, dedication, all that you are, humble and amaze me. You are remarkable human beings!

Love, Nancy Fisher
York, PA

By: Dana Bobbitt

Dana Bobbitt — Fri, 02 Mar 2007 22:38:32 +0000

Jane,
I’m a friend of a friend of Andy’s, and one of the “strangers” who has been following your story and praying for your whole family. I am a music therapist working in early intervention in Atlanta, and I worked briefly a couple years ago with a little boy with DiGeorge. In the course of working with hundreds of children with special needs, I firmly believe that special children require special children, and I know that you and Andy are the special parents that God chose for Ramona. She is a very lucky little girl. Every day God will give you the strength you need to get through. I don’t have any kids of my own, so I can only imagine how it must feel to go through this. Your blog today reminded me of an essay I love that I wanted to share with you. You, Ramona, Andy, and Simon will continue to be in my prayers.

God bless,
Dana

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…...

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

By: John

John — Fri, 02 Mar 2007 22:35:20 +0000

I am certain that you and Andy will enable Ramona to live a full and vibrant life and to teach her how to capitalize on the strengths God has given her!

You guys are remarkable in your honesty and dedication. We love you!
– John, Sara, and boys