Monday, September 18, 2006

Angel in Disguise

“See that you do not despise one of these little ones, for I say to you that their angels in heaven continually see the face of My Father who is in heaven.”
~ Matthew 18:10

“Trailing clouds of glory do we come
From God, who is our home:
Heaven lies about us in our infancy!”

William Wordsworth, “Ode: Intimations of Immortality”

This week I’d like to write about our newest little granddaughter, Katelyn Seraphina. Katelyn Seraphina entered the world on June 7, 2006, and she was baptized at St. Isidore’s Catholic Church in Manhattan, Kansas, on Sunday, September 17th.

As you may recall, Katelyn was born with Down syndrome, a congenital disorder caused by the presence of an extra 21st chromosome. The web site for the Greater Kansas City Down Syndrome Guild ( contains the following description:

Down syndrome is a chromosomal disorder that affects one in every 800 live births. It is one of the leading clinical causes of intellectual disability in the world. Individuals with Down syndrome are at higher risk for medical problems and language delays. Quality educational programs, along with a stimulating home environment and good medical care, enable individuals with Down syndrome to become contributing members of their families and communities. Approximately 4,000 babies are born in the United States with Down syndrome each year, affecting about one-quarter million families. There is a wide variation in the abilities, physical development, behavior and personalities of individuals with Down syndrome. Individuals with Down syndrome benefit from loving homes, appropriate medical care, inclusive education, and positive public attitudes.

When we realized that there was a problem with Katelyn, it was such a shock because it was so unexpected. My heart literally ached for our son Josh and his wife Lisa. No one expects to give birth to a baby with special needs, so when it happens, your head just starts spinning as you try to grasp the magnitude of the situation. I still remember when the doctor came into Lisa’s hospital room after examining Katelyn. She explained that they were “suspicious” that Katelyn might have Down syndrome, but they wouldn’t know for sure until the test results came back. With the greatest sensitivity and compassion, she shared that two of her closest friends had babies with Down syndrome within the last year and they both express the great joy their babies have added to their lives. With tears in their eyes, Josh and Lisa listened intently and nodded in agreement. “God chose us to be Katelyn’s parents,” Lisa said.

After the doctor left, Josh looked around at all the grandparents gathered in the room. “There are an awful lot of gloomy faces in here,” he said. It broke my heart to think that Josh might have felt – for even one moment – that we were somehow disappointed with Katelyn. It was just so hard to adjust to the news at first.

When we left the hospital I cried a bucket of tears and throughout the following day. When I called my brother Bill I could hardly get the words out I was sobbing so hard. He just kept saying, “Oh, Eileen. I’m so sorry.” I asked him if he could call the rest of my siblings – except Connie. I wanted to talk to Connie. As usual, she had a listening ear and the perfect gentle spirit to calm my troubled heart. That night Keen’s brother Kevin called and shared some comforting Bible verses with us from Psalm 139:13-17:

“For You created my inmost being; you knit me together in my mother's womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be. How precious to me are Your thoughts, O God! How vast is the sum of them!”

His phone call was a great encouragement to us, and after that Keen and I didn’t waste another minute feeling sad about what Katelyn didn’t have. We just started thanking God for the miracle of her birth and the wonder of her special little life. From that day forward, we have cherished every moment with our granddaughter – and we couldn’t love her more if we tried.

Here is an email Keen sent to Josh and Lisa two days after Katelyn’s birth:

Dear Josh and Lisa:

Mom and I want you to know that we are so proud of you. We are absolutely thrilled with our new granddaughter, Miss Katelyn.

She is so profoundly precious to us. She is only 48 hours old and she has brought so much love into our family. I can only imagine what it will be like in a week, month and in years to come. I’m so happy and feel so blessed to have Katelyn in our lives. We are merely audiences to the wonderful blessing God is bringing into our lives. This is truly a time for celebration!! Mom and I plan on coming up Saturday. When you are done with work, we’ll barbeque and then go to a driving range and crush some golf balls.

I love you, Josh and Lisa.


"Before I formed you in the womb I knew you; before you were born, I sanctified you." ~ Jeremiah 1:5

Thankfully, Katelyn has a healthy heart and is progressing well. She’s alert, active, and aware – always looking around at the people and things in her range of sight. If someone new comes in the room, she notices and turns her head in the direction of their voice. She is tracking objects very well from left to right and up and down. I think I already bragged about how she flipped from her tummy to her back when she was only 5 weeks old!

Last week I spent the night at their house and attended Katelyn’s group therapy session the next day. She had music therapy, did some work on an exercise ball, and had a baby massage. She has two to three classes a week including speech therapy, physical therapy, and occupational therapy. Katelyn’s only issue has been with feeding. She doesn’t always take the amount of milk she needs to have in a day, so her “Super-Mom” Lisa will often set the alarm to feed her in the middle of the night, even when Katelyn would have kept sleeping. Katelyn is such a contented little one. She rarely cries, so when she does cry, you know that something is really wrong.

We are so proud of the way Josh and Lisa have handled everything. Josh told us that during the first few minutes they had alone with Katelyn after her birth, he and Lisa prayed together and asked God to give them the strength and guidance they would need to take care of their special little girl.

“Faith is believing in advance what can only be understood in reverse.”
~ Chuck Swindoll

Josh and Lisa are the best parents Katelyn could ever hope to have. Recently Lisa said, “At first we wondered what our life would be like with her, but now we can’t imagine what our life would be like without her.” Lisa told me that she wouldn’t want Katelyn to be any different, because then she wouldn’t be Katelyn anymore. “Josh and I are just crazy about her,” she said.

Here is the upbeat email that Josh sent to all their friends and family after Katelyn’s birth:

“Hello everyone, as a new daddy I proudly get to show off photos of my new baby girl to everyone I meet and go on-and-on about how great she is and will be. I'd like to introduce all of you to Katelyn Seraphina Umbehr, who came into this world on 6/7/06. Little Miss Katelyn weighed 8.09 pounds, was 17" long, and caused her mother to go through 11 hours of drug-free labor (although her future siblings probably won't, Mom says).

Our little bundle of joy had a rough start at life and will be staying in the capable hands of the Shawnee Mission NICU for a little while. Miss Katelyn has Down syndrome, a murmur and a touch of pulmonary hypertension, so we're all just praying that she comes through everything ok. We're thanking God for 10 fingers and 10 toes and the rest is just bonus.

Please keep us in your prayers and check out the pictures of the newest [member] of the Umbehr family.

PS - The fact that her initials are KSU (our alma mater) is purely coincidence :) Katelyn is the name my mom had picked out for a girl but never used b/c she had all boys and Seraphina is the name of Katelyn's Great-Grandma whom Lisa adores.


I’d like to close by sharing some of the words of a song written by Bruce Carroll titled: “Sometimes Miracles Hide.” He is also the author of a book by the same title. It is a collection of short stories from parents of children with special needs. At the beginning of the song, the doctor informs a young couple that there is a problem with the baby the mother is carrying. It continues:

"I’ll wait a week for your decision,” and then the words cut like a knife. “I’m sure everyone will understand if you want to end its life." Though they were badly shaken, they just had no choice, because they knew God creates no accidents and they were sure they heard His voice, sayin’:

(chorus) Sometimes miracles hide, and God will wrap some blessings in disguise, and you may have to wait this lifetime, to see the reasons with your eyes, cause sometimes miracles hide.

Though she was not like the other girls they thought she was the best, and through all the years of struggle neither whispered one regret. And the first day that she started school and took her first bus ride, they’d remembered the words that God had spoke and they both broke down and cried.

You see to them it did not matter, why some things in life take place, cause they just knew the joy they felt when they’d look into her face. They learned that sometimes miracles hide, they said God has wrapped our blessing in disguise, and we may have to wait this lifetime to see the reasons with our eyes, we know sometimes miracles hide. We’ve learned sometimes miracles hide.


The night that Katelyn was born I gave Lisa a big hug. “She’s going to be such a blessing,” I whispered. With tears in her eyes Lisa softly replied, “She already is.”

You’re so right, Lisa. She already is. As my friend Barbara Lerma said, she is that “pearl of great price – a sweet little pearl to treasure and love.” Miss Katelyn Seraphina Umbehr. Our little angel in disguise.

“Suffer the little children to come unto Me, and forbid them not: for of such is the kingdom of God.”
~ Mark 10:14

Katelyn Seraphina in her baptismal gown

Fr. Keith baptizes Katelyn

The proud parents and grandparents at Katelyn's baptism