Wednesday, July 23, 2008


1 What are your thoughts?

I love watching Ellie playing with Nichole. She is so sweet. Sometimes she is overwhelming, but only because she wants to give more hugs and more kisses. She simply wants to love on her baby sister, and that is how she knows to do it. I would say that Nichole, is also learning to show her affection that way, as her little hands grab your face as tight as she can and she pulls you into a big open mouth kiss. Wet! But so precious.
I decided I am going to be very honest. After all, this is what has been on my heart lately.
What has been the hardest thing for me with Nichole having Down syndrome? The letting go of my dream of having two little girls so close in age. I pictures two little Ellies, wearing ballerina outfits and playing dollies. Family vacation as the two best friends giggle in their tent, telling stories and sharing dreams. Having a shared circle of friends as they grow up. Maybe shopping trips together or hanging out in the house as they do their nails.
All these things they will be able to do, regardless of Nichole having Down syndrome, but I know, that it will be different. Different from my dreams. (Again my... selfishness again?)
I watched a movie the other day where they said that "If you want to make God laugh, tell Him your dreams." How true. Not only that, but I know my dreams are so small in comparison of what He has, for me, for my husband, and for my girls. Maybe at some point I was sad for Ellie, sad that she would not have a typical sister. maybe I was sad for Nichole, sad that she would have a sister that would be embarrassed about her. But who am I to know, what is best for my daughters. But God knows, and He knows exactly, what each one of us needs.
I have thought a lot about this lately, as I watch the world either receive Nichole or ignore her, maybe pity her for not being "normal". You see, Ellie will never have to worry about that, she will always be received. As a Christian you might say, we all face some rejection, but that is not what I am talking about. I am talking about the simple fact, that some people only see Down syndrome, and not Nichole.
What will this do to their relationship? What about my dream? But God is good. Matthew 7:11 tells us that He gives us good gifts, because he is our loving Father.
God, in His faithfulness, has also given me new dreams. Dreams where I know that Ellie will be able to be as free as she can be in play with her sister. That Ellie will always know that Nichole will love her and think she is the greatest regardless of what anyone else thinks. That Nichole will see Ellie for who she is in God's eyes, and not who she is in the world's eyes, and Ellie will know it. That when Ellie is sad, or heartbroken, or tired, she will be able to come to her sister, and let out her emotion sand feelings like she would never be able to with anyone else in the world. That Ellie will know that there is nothing like her sister's embrace, and maybe, just maybe, those will be hugs straight from God. They will giggle together, play together, and go shopping together. It might be different that what I envisioned, but the new dreams are so much richer, and so much deeper.
So as I mourn a loss, I rejoice in what lays ahead. All the wonderful experiences that I will see my daughters share, and the bond that they will have simply because Nichole sports and extra chromosome. Who Ellie will become because of her sister, and who Nichole will become because of Ellie. God knows that they are perfect for each other, that they are perfect sisters. And that is good enough for me.

Ellie loves to climb into Nichole's crib and cuddle with her. Nichole loves it too!

Wednesday, July 16, 2008

Ellie Belly

2 What are your thoughts?
Ellie lined up all her bears and sat down next to them. Then she asked to have her picture taken with her "friends." It was so cute!
I also took some pictures of Ellie on our loooong trip to Wyoming. Most of them she is making silly faces, but I actually caught a few where she is simply beautiful and sweet.
I love her eyes and her expressions.

She is however, very silly. It is hard not to crush her excitement at times, like when it is time to go to bed and we need to stop. Sigh. I suppose she is too much like her mother :)I cherish the times when she still wants to cuddle and be mommy's little girl.

Silly Nikki and reecesrainbow

1 What are your thoughts?
I took these pictures on our looong trip to Wyoming and back. I got the greatest faces from Nichole, so I thought I would share them with you.

There is website called It is an adoption site for children with Down syndrome. There is a section called, "Why Down Syndrome?"
I love what they say, so I thought I would sahre it with you too.
"Every proud birth parent and overjoyed adoptive parent who has experienced the blessing that is Down syndrome invite you to SEE the joy for yourself. If you are considering the adoption of a child with special needs, you most likely feel some sort of a "call" to reach out in this way. Regardless of your faith, there is no denying that these children are finally being CELEBRATED and RECOGNIZED for the incredibly inspirational and life-altering people that they are. These children are crafted by God's own hand, and sent here for His purpose of perpetuating light, love, healing, and spiritual growth in the world. Discover the boundless joy and purpose you will discover in your own life by CHOOSING to embrace a child with Down syndrome."
In a section full of pictures it reads...
"Look into the eyes of these children and see God's light glowing within each of them.
These children were all born with what I truly believe to be a physical marker of God's Divine Favor..
...that they might BE set apart, recognized at first glance, as a CHOSEN ONE.
Grow your soul, your faith, your purpose, in the light of these children....
Live in awe of their perpetual innocence, their inability to comprehend evil, & their God-given gift to INSPIRE THE WORLD"
My daughter is God's amazing gift to us. It is my prayer that some day, others will be able to see, what we see in her. Maybe some day, you will too.

Our Backpacking Trip!

0 What are your thoughts?
A few weeks late, but I wanted to share some pictures form our backpacking trip.

Andy enjoyed fishing at the Big Horn Mountains of Wyoming. I believe the lake was called "lost Lake." He got the biggest catch of the day!!!
He also caught five fish. Total, we had 13 fish by the end of the day, and there were 13 of us! I loved eating those nummy fish!

We were supposed to look sweet in this picture, but do you know Andy?
Us girls were not as good at the "go off the trails and go down a steep mountain" thing. But we did it!
I love this picture of Lindsey (Our babysitter extraordinaire if you were wondering).
So, where is this trail?

I also love this picture, as the kids were looking at the "Raging River of death." It was pretty spectacular.

Monday, July 7, 2008

Beautiful Wyoming

0 What are your thoughts?
Every summer Andy takes the youth from our church on a trip.
The plan was to take the kids to Montana, but because of the weather, we ended up going to Wyoming.
It was beautiful!

I love this picture. The gate is so inviting.
Come. Enjoy. Rest. Breathe.
Beauty. Peace. Calm. Breeze.

Lost Lake. we took a steep hike to get there.

On the way to WY, we watched Emperor's New Groove. Hence the name, "The Raging River of Death."

Wednesday, July 2, 2008

Special Blessings, Special Vocabulary

1 What are your thoughts?
This is an article from a website I take no credit for any of it. I sure hope this is not considered plagiarism!

Special Blessings, Special Vocabulary

by Kimberlee Kadar-Kallen

Kimberlee Kadar-Kallen is mother to Eliza, born with Down syndrome and AVSD. Eliza spent her first months in heart failure until her heart repair. But now at almost four years of age, she is thriving as a homeschooled child alongside her six siblings. Kimberlee blogs at Pondered in My Heart.

When a family first receives the news that they may have a child with Down syndrome, they are likely to encounter some new vocabulary not previously part of their everyday lexicon. Over time these new, unfamiliar words lose their cumbersome feel and become a comfortable part of everyday life, much like an unyielding new pair of shoes softens and grows familiar. I thought I would explain some of these terms and what they have come to mean for our family.

Nuchal fold - This is the delicious area of skin at the back of the neck that is extra thick and soft and smooshy in children with Down syndrome and therefore the perfect place to snuggle, nuzzle, bury-your-nose-in and cuddle your sweet baby. Michael says it's his favorite spot to kiss Eliza.
Very true! If you have seen me gobble up Nichole, you know it is without a doubt a favorite spot!

Trisomy 21 - Trisomy means there are three copies of each chromosome instead of two, and it has been discovered that cuteness is located on the 21 st chromosome. Be prepared for unprecedented levels of cuteness, even if you have many other children who you think are cute.
Ellie is very cute! She was the cutest baby...until Nichole. There is definitely something different, something like love, gentleness, kindness, extra portion of God that comes along with the extra chromosome.

Hypotonia - Sometimes referred to as poor muscle tone, what this really means is that all of Baby is super soft and cuddly. Synonyms for this condition are smoosh-ball, teddy-bear, snuggle-puss, honey-love, and so forth. Squeezing and hugging Baby is a frequent and irresistible temptation.
It is!

Short stature - Children with Down syndrome are typically short in stature due in part to short limbs. This just means parents and other loved ones will have abundant opportunity for exercise in the form of deep knee bends.
I just think it is cute! And let's face it, I am not that tall to start with, so my genes are not helping in this area.

Speech therapists- This is another word for siblings. These are the children who will spend countless hours teaching your child with Down syndrome to talk and speak clearly. They will mimic sounds, invent oral exercises, play word games, demonstrate proper mouth movements, repeat key phrases, practice letters and numbers and loads more ad infinitum. Some therapists have unique methods such as requiring the client to say, 'Guard, release the faun!' in order to have the car sear unbuckled or repeating unusual words like 'gastrovascular', but you have to just put up with their quirks.
Have you met Ellie? She is everyone's speech therapist!

Developmental delays - What this really means is that for once you don't have to say, 'Oh, they grow up so fast!' The delight of babyhood and toddlerhood is prolonged and there are ever so many more moments of it to savor. Baby will grow and learn in a slow and gentle manner and there will be plenty of opportunities to practice cheerleading along the way. You will also marvel and appreciate each little milestone that you may have taken for granted in all of your other children.
Yes, yes, yes!

Congenital heart defect - This is really one of several code phrases for an intensive training course in learning the true meaning of Jesus, I trust in you. This training involves great spiritual growth and opportunity for deepening and greatly magnifying one's prayer life. There may even be a special retreat involved where one can really progress in prayer. The special code term 'open-heart surgery' is often used for this unique retreat that takes place in a hospital.
The greatest blessing. Makes me think of what our friends, the Glandon family commented to me at some point, "Everyone should have a person with Down syndrome in their family."

Special needs child - All children are special and all children have needs. Both of these facts can sometimes be taken for granted, but that is less likely with special needs parenting. This child will force you to see things more closely to the way God sees things, which is very, very contrary to the way the world sees things. The 'special needs child' instantly and unequivocally obliterates the blather of the world's view of life. Each and every life is a precious gift from His hand, of equal value in His sight, and the special child makes that especially clear, every moment of every day.
So true.

(Italics are my personal comments)



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