Monthly Archives: January 2014

Down Syndrome and the Sanctity of Life

Sanctity of Life – in religion and ethics the belief is a principle of implied protection regarding all life which is said to be sacred, holy, or of such value not to be violated. (dictionary.com)

Sanctity of Life Sunday took place this week. I’m pro-life, but I rarely think about the 1.3 million children who are aborted in a years time. Since David’s birth the statistics of abortion are more sobering. The abortion rate of Down syndrome children is shockingly high – 93% of women who receive a DS diagnosis choose to end their pregnancy. Women who choose to abort a DS child argue that it is unfair to be asked to raise a disabled child, or that is in unfair to ask a child to live a limited life.

I wish they knew! I wish they knew how incredibly beautiful all life is, and that a Down syndrome diagnosis is some of the best news you will ever receive.  Yes, you read that right. When we received David’s diagnosis I cried. I grieved for the child I had imagined for 9 months. When people would tell me of how my world would expand, how I would see the world with new eyes, how our family would experience love, and joy and blessings – I would think of how nice it was of them to tell me that, but I didn’t really believe it. I understand now, and I know they were right. Down syndrome has been an unexpected part of our lives, but I can honestly tell you that David’s life is beautiful and valued. He is perfect. He is strong. He is happy. His eyes sparkle (literally). He gives the best snuggles, kisses, and his smile lights his entire face – I LOVE it when this boy smiles. Lily has not been given a “bad” sibling, and Louis and I have not been given a “bad” son. We don’t look at David and see Down syndrome, we see our little boy – a little boy who captured our hearts from the first second of his life and who continues to bring happiness, joy, and blessings to our entire family. In his short 8 months of life God has used David to teach me many lessons, and I’m amazed of the stories I hear of how God has used David in the lives of others.

ALL LIFE IS A GIFT.

image

ALL LIFE IS PRECIOUS!

image

ALL LIFE IS BEAUTIFUL!

image

ALL LIFE IS SACRED!

image

Progress Report

David turned 8 months old on January 4. Happy, happy boy…

image

We began our new year with doctor’s appointments. There is always a dread as these appointments draw closer and a sense of relief when they are over. David saw his pediatrician, and received a good report. He weighs 18 pounds, and on the Down syndrome growth chart he is 75% in his weight (no surprise there) and 25-50% in his height. His oxygen, heart rate, and blood pressure were perfect! He had his scheduled CBC and thyroid test. Both came back normal, and I was very thankful. I have said many prayers concerning both test. Children with DS have a slightly elevated risk for childhood leukemia. This fact scares me – I think about it every day. I am more fearful than I should be, and I have to constantly remind myself of God’s faithfulness to us in the past year. Both of these test will be repeated in 6 months, then once a year until he is 5. David also had a follow up appointment with Dr. Feliz (the surgeon who performed his Hirschpreungs pull through). All looked well. I felt like this poor little guy had a tough week – a finger prick that left the nurse squeezing his finger for a very long time, blood drawn from his arm, and a very painful rectal exam that left him screaming and left me thinking I was going to pass out. He will have his eyes and hearing checked in a few weeks. If you think about it please pray for his hearing test. His last test was a few months ago. One ear was perfect, but the other ear was full of fluid and non-responsive. The doctor felt like it was from the fluid, but his ears will have to be checked again.

We are pursuing a variety of nutritional supplements and foods to help support David’s growth and development. I have joined a support group who treat their children needs through both medical interventions, supplements and clean (organic) diets.  I have also found a group of families who implement the same type of therapy program. I am excited to be a part of these groups and to learn from their experience.

We are still doing therapy with David every day. We are seeing some progress, but it is slow. Some days leave me weary and near tears because I want to see more progress, but other days I am content with the progress I do see. We are still working on sitting. The average range for a child with DS to begin sitting on their own is anywhere from 7 – 15 months. David can tripod sit for longer periods of a time, and he has graduated to an exer-saucer and bumbo seat. He is rolling all around on the floor. I will find him under chairs or off the rug on the concrete floors. He is holding a bottle on his own. It’s a small bottle, but it’s progress!

image

He is “talking” more. He is saying “mamama” – of course this thrills me.

And Lily…

image

Well, she is busy being a great big sister and mama’s big helper. She really is alot of help around the house (she folded a basket of laundry this morning all by herself – woohoo!) About a month ago she was playing with her doll, and I heard her say, “It’s time for your therapy.” Tears instantly stung my eyes, and in my sinfulness I thought that no little girl should be familiar with that type of language. My world, Lily’s world, our everyday vocabulary is different from what I ever imagined, and I remind myself that this is not a bad thing. I pray every day that God will teach us needed lessons, bless us to grow into better individuals.

Both of these kiddos bring me so much joy!

image

2013 in Pictures

 JANUARY

image

FEBRUARY

image

MAY 3 – The day before David’s Birth

image

MAY 4

“For this child I have prayed; and the Lord has given me my petition…” 1 Samuel 1:27

david-960x350.jpg

photo1

image

image

image

JUNE

“I will sing of Thy mercy.” Psalm 89:1

IMG_0841

JULY

“I will sing unto the Lord, because he hath dealt bountifully with me.” Psalm 13:6

IMG_1164

david 2

AUGUST 13 – HEART SURGERY

“What time I am afraid, I will trust in thee.” Psalm 56:3

IMG_1006

IMG_1009

2013-08-14 10.42.10

IMG_1039

IMG_1294

“Sing praises to God, sing praises; sing praises unto the King: sing praises.” Psalm 47:6

image

Lily turned 4, two weeks after open heart surgery.

IMG_1580

September

IMG_2105

IMG_2124

OCTOBER

IMG_2051

IMG_1599

NOVEMBER AND DECEMBER

“Bless the Lord, O my soul: and all that is within me bless his holy name.” Psalm 103:1

image

image

image

During the trials, joys, and unexpected events of 2013 the Lord proved Himself to be true to His word. He is faithful, merciful, loving, good. We can expect nothing different in 2014.