Saturday, November 1, 2008

Brief, but spectacular lives

I fell into bed last evening with this on my mind. That by mentioning only a few of the longer-surviving of the trisomy babies I know, to make one point, I left out the biggest part of the truth about what the fight entails. The literature about babies with conditions linked with the coined phrase, "incompatible with life" and termed "lethal," states that most of these babies will not make it to term. That most who do make it to term and survive birth, will not live long. We were quoted, days, weeks, 2 months. Because of this information, even most medical professionals do not have any sort of hope to offer expectant (or new) parents. And without hope, many will endure a pregancy filled with despair, added to the necessary grieving. Or will choose to end the pregnancy, thinking, "What difference does it make?"

What no one seems to share with parents is that there is hope. Hope that you will fall helplessly and madly in love with YOUR child, regardless of the number of days, hours, or months your baby lives. That your baby will look like his or her relatives. That you will love and kiss your baby's face, even if there is a cleft, or something else unusual. In fact, you will come to love your baby's club foot or cute hands as your favorite features. And if your baby is not a long-term survivor, you will long to relive the moments you shared with him or her again, and again. Or even "just one more time." That you will savor each beautiful photo of your child's life. That there will not be one moment when you regret the decision that you made to hope for life, and wait for God's plan to be unveiled. That you will see, smell, feel the weight and softness of your child, and know you have in your arms an intentional creation of God, a person who was created in God's own image. That God's image must not have to do with physical "perfection."

And if you ask the moms I know who have miscarried babies, or had babies born still, even they will tell you that each baby is remembered, and is indelibly written on their hearts. Most of these babies have names given by their families. You should read the long list of comments left on the Bring the Rain blog for National Day of Remembrance for pregnancy and infant loss to see the impact a brief life can make.

There is always hope when you open your heart to love and to God's gifts.

So meet the rest of the babies who have graced dear friends' lives, and whose brief, but spectacular lives have made a lasting impression on my heart. Whose parents chose to trust in the hand of a personal and all-powerful, all-knowing God who does not make mistakes. Who did not view their babies as incompatible with their lives, despite a diagnosis of Trisomy 18 or 13.

Meet Christian Dale, Eva Janette, Macie (T13), Maddox, Mary Grace, Nathan (T13), Poppy Joy. And I can't leave out Asher (who did not have T18 or T13). Each a precious child given God's breath for their time on Earth, and now comfortably seated on God's (apparently spacious) lap! Each fearfully and wonderfully made, and not a mistake to be "fixed."

See! I will not forget you . . I have carved you on the palm of my hand!
Isaiah 49:15

8 comments:

ThereseAnn said...

Oh that Angel Ornament pic is so cute with the teapot. I haven't seen that one.

Have you seen this wonderful story about the teacup?
http://www.livingwithtrisomy13.org/inspirations.htm#The_Tea_Cup

I've seen your blog from time to time and glad to see so many familiar blogs.

I'd like to invite you and any of your Trisomy 13 families to share their children on the "LivingwithTrisomy13.org" album pages and we'll also be sure to add their blog URL's for easy viewing.

You are doing wonderful work helping to get Trisomy Awareness out--I'll look forward to visiting your blog from to time to time.

Wishing you the best,
ThereseAnn, mom to Natalia now 8 yrs with full trisomy 13

Cathy said...

Connie, This post is beautiful. Thank you so much for speaking for all the little ones. You are right when you speak of perfection. We know how their little hands and feet are so perfect. They are silk and so sweet. You write beautiful and I will continue to read.

May said...

Connie you've touched me with what you've written. How I wish expectant moms with a T18 diagnosis could read this! How I wish I could say all this each time I meet a doctor! You're truly a warrior for Mallorie.

Kenzie said...

Connie-

Dear friend... the fight begins the moment we find out something is amiss, huh? Each one of us that have carried one of these precious babies has had to fight on their behalf, fight for care, fight for understanding... even our families that didn't spend a lot of time with the little ones in our arms.

Thank you for this post and for writing about it so beautifully! You are so wonderful and I am so thankful for the hope that you have given to each of us listed in this post. Mallorie is amazing!

Love you!
Kenz

Corie said...

Thank you for your post. I lost my son in January from a fatal diagnosis. It was not T18, they thought it was T13 but it was a 13th gene deletion among othr things. Ok enough sad! I love what you shared. No one shares with you all the amazing things about your child. That second paragraph is perfectly written. Thank you for writing. I have been blessed by seeing Mallories story and the life God has given to her. Blessings to you.

Alyssa's mom said...

Thank you and Amen!! i have a post on saved on this very subject~hope is a powerful tool.

Alyssa's mom- Trish

www.wndrfllymde.blogspot.com

Carla Burlando said...

I just found your blog through Leah's (Christians mom). Mallorie is such a sweetheart and is so blessed to have an amazing mommy to fight for her. Our first son passed away 8 years ago. He was diagnosed with T-18 after a routine ultrasound found a severe heart defect. He lived in our arms for 1 hour. He was a precious and intentional creation...even though he had a cleft lip. It is nice to see your little sweetheart posted with her cleft lip and all. One of my major regrets was not taking more pictures of him. I was so alarmed with the exterior deformity..even though it was the interior one that caused the problems..that I didn't let anyone take pictures of his face. I think in some way I was trying to protect him. God Bless you in your fight for Mallorie.

Tandy and Jeff said...

Your post made me cry! You are so right! Every baby is a blessing no matter how long their life expenctancy is. And soo incredibly sad that just because of a possible condition people automatically write them off as not being worth the effort to save their lives. EVERY ONE is WORTH it!


PS. You are great with words!