Our First WDSD

Today is World Down Syndrome Day.

On this day last year, I was completely oblivious to the significance of the numbers 3-21. It once meant no more than a day on the calendar – March 21st, but now it signifies Trisomy 21, three copies of the twenty-first chromosome. Down syndrome.

Today we celebrate The Blessing.

IMGP2399On this day in an effort to raise awareness, there are a lot of blogs posting “A Day in the Life Of” stories to convey what it is like to have a child with Down Syndrome. I thought about doing this, but our day looks just like it did before Down Syndrome entered our lives. We wake, we eat, we play, we learn. The Blessing is a kick-back kind of baby who gets carried around by her older sisters and kissed and cuddled all day. We do a few therapy related things here and there, but our approach is low key and feels like play. Our therapist comes to our house every so often and it is like a visit with an old friend. If we go out, people smile and comment on how cute the baby is (when they aren’t bowled over by the sheer number of children trailing behind me!).  It all feels so normal.

Because it is normal. Having a baby with Down syndrome isn’t as scary as it sounds. It is actually quite lovely.

Happy World Down Syndrome Day!

 

 

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Rolling Lessons

The Blessing needs some help learning how to roll over. Her “lessons” are a big event in our house as you will see in this video. (I had a kid play cinematographer, so please excuse the shakes and bumps)

This is a fun way to play together, but also to get her to experience rolling over. We also set up a “ramp” of sorts with couch cushions to roll her gently down, put her on her side and encourage her to roll to her back or front, and spend a lot of time on our tummies with her doing “tummy time” together.

Sniffles, Coughs, and Runny Nose

The Blessing is sick. She has been sick for weeks. She has the same cold that took the rest of us three days to beat, but she just can’t beat it. I know she feels miserable, but she smiles through it all.

IMGP2248I like to do things as naturally and gently as possible and so I have scoured the internet looking for ways of helping her little body battle this nasty bug. Currently she is exclusively breast fed, so I upped my intake of vitamin C, elderberry syrup, and zinc, but I wanted to do something for her more directly. So, I am starting with essential oils. I found a helpful page on using essential oils specifically for children with Down syndrome (Heritage Essential Oils) and zeroed in on the page concerning congestion. Up to this point, I have not used essential oils and now have to learn how.

Now, at every diaper change I get out the Lung Healing oil (that I mixed into coconut oil), and I give her a nice foot massage. A tiny drop of Myrtle in each nostril, and then a spritz of Respiratory relief in the air above her face finishes off the “treatment”. We are on day two, but already she seems to be getting better – her coughing is more productive and her nose isn’t running quite so much.

IMGP2243Because The Blessing has Down syndrome, her immune system isn’t as strong as the other kids’, and with smaller nasal passages and lower muscle tone, nasal congestion is something that I really need know how to defeat naturally through strengthening and supporting her immune response.

IMGP2252I don’t mean for this to sound like an advertisement for the oils that I am using. I am not getting compensated in any way for writing this. I am writing because it is hard to find natural cures and treatments online for my daughter. Most forums, information, and recommendations on the internet are very allopathic. So, I want to spread the word that if your child with Down syndrome has a bad cold, there is something you could try before reaching for the Benadryl or rushing to the doctor’s office. 

 

 

 

Six Months

The Blessing at six months –

IMGP1803Nursing like a pro and growing like a champ – weighing 14lbs and in the 75th percentile! (on the Down Syndrome Girl growth chart)

IMGP1802Reaching milestones right on schedule – rolling on the floor, doing push ups and planks, and supported sitting. Oh, and babbling on and on. This kid loves to sing and yell!

IMGP1796Passing blood tests with flying colors and perfectly healthy!

IMGP1787And smiling, smiling, smiling. She is the happiest baby I have ever known!

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The last six months have been kind. I am ready for the next six!

 

 

 

 

Power of Words

We hear it said in all manner of ways – that our words have power. Sometimes we are cautioned to keep our talk positive or be careful how we talk about others. But I am not really talking about that. I am talking about Facebook.

(You didn’t see that one coming, did ya?)

Let me set the stage. My two day old baby was laying in a hospital bed, just hours after being snatched from death by some amazing emergency room doctors. Her prognosis was unknown. I hadn’t held her in hours. I could only stroke her tiny hand and cry as I stood next to her bed. I listened to the beeping and whirring of the many machines that were at the end of all the tubes and wires coming out of her teeny tiny body. My own body ached from my recent childbirth experience, and I hadn’t slept in days. I was living the very worst moments of my life right there in that hospital room.

This is what I posted on Facebook that day –

“[The Blessing] has been admitted into the ICU after a very dramatic ER experience. She is not doing well at all. Doc says this is only the beginning as we learn about the complications that come with Down Syndrome. Pray pray pray. We need a few miracles.”

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And something happened. People started commenting –

“Praying for you all!!! And my “like” is for the miracles to come!!!”

“Praying. Love you”

“Our family is praying for yours”

“Praying my heart out”.

“We are with you in spirit. We love you. We are praying”

“Praying! Love you! (((Hugs!)))”

These are copied and pasted from that first post and are just a small portion of the many messages just like it.

I know that God answers prayer. I know that He got us through that horrendous ordeal and that He comforted me. The prayers of His people held us up.

But just the sentiments, typed in a comment box under a Facebook status did wonders to my heart. I cannot explain to you how very powerful it was to read all of them. Knowing that all of these people had us in their prayers, were thinking of us, and hoping miracles for us, was a soothing balm on my troubled heart.

I am a praying woman, but I rarely say, “I am praying for you”. It sounds so cliche, so empty. But I do pray for my friends and family. I read their status updates on Facebook and I keep tabs on their trials and I hope miracles for them. But I would never say it.

That is all changed. There is power in words. There is comfort and healing. There is hope. Every single Facebook message we received during The Blessing’s hospital stay lifted us up and gave us hope.

So now I say it. When I see a loved one hurting, I say it. And when I say it, know that I mean it. I am praying for you.

And, now look at The Blessing! Six months old and doing great!

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