Special Blessings, Special Vocabulary

Eliza!

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.

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.

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.

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.

Speech therapists- This is another word for siblings. These are the professionals 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.

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.

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.

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.

L is for Lucy and Leah.

Eliza signs 'cute'.

Snuggle that girl good.

Comments

[Suzanne Temple]

What a fabulous post, kimberlee!

[Helen (Mary Vitamin)]

This is the best!

[Margaret in Minnesota]

Special blessings...

Special vocabulary...

Special child...

Special family.

Thank you for this absolutely BEAUTIFUL post, Kimberlee. It's destined to be a classic!

[Ellen]

You have shown us all that we must see that the glass is half full and not half empty.

Now these are definitions that should appear in a dictionary for parents who have been given the special privilege of raising a gift like Eliza.

[Amy]

I'm not exaggerating when I say this is the most beautiful thing I ever remember reading on "special" children. What a gift you have to express the good! I need to learn from you. Thank you for writing this!

[Meredith]

Beautiful in every sense of the word, and how about that cutie, she's so precious, thank you for sharing her with us :) Love,

[Cheryl M.]

Kimberlee, such a beautiful post about a beautiful child. :)

Our priest once told a story from the pulpit about his own family...very smart, educated people with many degrees between them...he called them "a hyper-educated family"...then there was his youngest sister who was a "special child"...he referred to her as the family member having the "Ph.D. in Love"

[rebecca]

Stopped by via Homeschool Blog Award Nominees link-up. I just had to say thank you for this post. It is BEAUTIFUL and humorous and sweet. You made my day.

PSSt. Also-LOVE that crocheted food ! TOO CUTE and I am sure SO much fun for little hands!

[almamater]

Thank you. Beautiful.

[Carmela]

Beautiful post & Beautiful child!

[Jeanne]

Thank you. I have a 5 year old DS boy, and I loved reading this. God Bless you. I especially loved the professionl crossed out, children as speech teachers. I am also a homeschooling Mother of seven.

[Louise]

What a beautiful post!

[Stephanie]

Awesome! As a fellow parent of a child who happens to have DS, I absolutely agree with all these definitions. Perhaps if more expectant and new mothers facing this wonderful journey could read this it would restore their faith and give them hope.
May He continue to bless you and yours and continue to use you as a wonderful vessel of inspiration and hope.

[Alice Gunther]

Yes, I would say that Eliza definitely does reach unprecedented levels of cuteness--that is for sure!!!

Beautiful!

[Kari]

I am so happy I came across your blog. What a beautiful post. I smiled throughout the entire thing. Eliza is Beautiful!! :)

[Nicole]

So very true! Thanks for sharing your girl and your heart. I too have an angel who has T21. We also almost adopted another one last year and had her named Aliza. :) I LOVE that name! HUGS

[Mrs Pea]

I'm signing cute right back at your beautiful Eliza. May the Lord carry her very close to His heart.

[Wendy]

Thank you so much for writing that. I really needed to see it. Our sweet girl is scheduled for a cath procedure in Jan that may end up needing to be an open heart procedure. We just had her first birthday party and it was awesome!

[Aunt Trishy]

WOW! I am in tears! My nephew has DS and he is THE most amazing beautiful child. Thank you for shedding a more positive light on our special gifts from Heaven. I wish everyone could see the joy they bring. You could not have said it better! May God bless you & your family abundantly!

[Nori Coleman]

Awesome post can't wait to share it with my friends and maybe even my OB/GYN. Your daughter is beautiful and such a gift to us all!

[Donna]

Oh, Kimberlee this is beautiful. I heard all these words three years ago, but the definitions were so very different. Yours are accurate!

[Christi]

This is a beautiful post. Thank you for sharing.
Hugs.....

[Rose]

Kimberlee, once again you have made "poetry" out of life and we have reaped the blessings.
Thank you for sharing your little one with us.......God Bless.

[Dani]

Just found your website (via Dawn's By Sun and Candlelight). Enjoying my visit and having a delightful little one myself, absolutely love your definitions!

God bless and Merry Christmas!

[Kimberlee]

I have been amazed and touched by all of your heartwarming comments and I thank you all so very much! And Donna, I remain so very sorry about your sweet special blessing who went straight home to his Maker.