The Day After Awareness

The Day After Awareness

You may or may not know that October was “Down Syndrome Awareness Month”. My Facebook page was flooded all month long with cute squinty eyed faces gracing meme’s with cute slogans, Ds trivia, and blue and yellow ribbons. Last year I loved this month long campaign to make people aware of Down syndrome, and I had hopes of one day contributing to it in years to come. But this year I refrained from much “awareness spreading” at all.IMG_3699

I understand that many folks have outdated preconceived notions about Down syndrome and there is a need to educate those people. But much of the info was trivia or slogans. There is only one thing that I want to make everyone aware of when it comes to my daughter’s extra chromosome. There is only one thing that matters to me.

IMG_0235People with Down syndrome are People.

I spend a lot of time and money researching and implementing therapies, supplements, and even pharmaceuticals that promise to minimize or negate the affects of her condition. But even if all of that fails and her body and mind are damaged by the extra genetic material within her, she is still a blessing. Our blessing.

I fully expect The Blessing to live a long and healthy life, but even if she doesn’t she has value.

I fully expect The Blessing to achieve great things, but even if she doesn’t she will contribute to my life and the lives around her just by being with us.

I fully expect The Blessing to prosper in all that she does, even if it doesn’t look like prospering to the world.

IMG_2330_2I know that whatever her future holds, whether it looks like success to anyone else, she will be successful. Because she has dreams and goals and feelings and desires and dissappointments and failures and successes and preferences and strengths and weaknesses and attitudes and everything else that you and I have. Because she is human.

Her value is not is what she does or how far she climbs. Her value lies in her being. And I fully believe that even if she were to regress to a vegetative state and I were to spend the rest of my life feeding her through a tube and changing her diapers, she still would have immeasurable value. No extra chromosome, no developmental delay, no speech impediment, no amount of physical or mental weakness can change her humanity or diminish her worth. IMG_2277

So while all the Down syndrome advocates are out making a case for the value of these beloved people, I just want to step back and say this one thing that trumps it all.

People with Down syndrome lead happy and productive lives, but that is not why they matter. 

People with Down syndrome are capable of great things, but that is not where their worth lies.

People with Down syndrome are people.

And we need to treat them as valuable members of our society whether they give us anything in return or not.IMG_0549

Eighteen Months of Happy

The Blessing is a year and a half old.

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She is delightful. And curious. She is adventurous and funny. And I think she knows that she is funny. She has a stubborn streak like nobody’s business. She is smart and learning new signs every day. She loves her big sisters and brother to death and follows them all over the house and gets into all their stuff. She gets into my stuff, too, especially my yarn. She is a daddy’s girl and craves his attention. She loves being outside. She loves hats and babies and baths.

She brings joy to every single day.

And I barely even remember that she has Down syndrome. It is like a tiny footnote in our lives, only relevant when a doctor’s visit or therapy session reminds us. She takes her supplement when we all take our daily vitamin C and cod liver oil. She gets juice more often than the other kids because juice hides her bedtime supplement. She sometimes needs a little tweak to her diet to get her bowels moving. And that is about as far as her extra chromosome affects us.

The Blessing is nothing I expected and far from what I feared when she first was born. I was so afraid of “delays”and “issues”. I had no idea how normal this would all be. She is first and foremost and mostly just my baby girl.

And while my mind still seeks ways to improve her health and future and I am constantly lurking in Down syndrome website forums, my day to day living is barely different from how it would have been had she been born “normal”.

The Blessing is aptly knick-named. She blesses us everyday because of who she is, not because of how many chromosomes she has.

She has given us eighteen months of happy.

How to Make Poop in 10 Easy Steps

How to Make Poop in 10 Easy Steps

If you have a child with Down syndrome, then I am sure you are familiar with The Blessing’s arch enemy, Constipation. This insidious evil haunts our lives daily as I count the days between dirty diapers, analyze every food that she eats (“will this food help her poo or clog her up?”), and celebrate every poo-splosion with tears of joy and elated text messages to The Man that read such things as “Poo all over the crib! YAY!” and “She finally pooped. I think I cried with relief!”

I have scoured the web in search of ways to help my baby pass her stool and the most common answer is Miralax. Miralax is a medication that most doctors assure us is perfectly safe for our kids to take regularly over a lifetime. Being skeptical of pharmaceuticals in general and statements like that in particular, I did a little digging and came up with a big resounding, “NO!” Well, actually, it was a wimpy little, “Gosh! I hope I can find something else that works because I really don’t want to put my child on a medication to help her poo, but I guess as a last resort we might have to get some”, but you know what I mean. I don’t want to write a post about Miralax and why we don’t use it, but my main concern is that Miralax was created and approved for adult use over short time periods. It was never intended to be used by children over the course of their lives, and the safety and wisdom of such use has been called into question in recent times.

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What I am going to share with you is what we are using instead. I don’t know which of these is doing the job, or if it is the combination of some or all of them, but since we started this little routine, The Blessing has become a fount of brown icky, making me a very happy mama! So, without further ado, I present to you,

How to Make Poop in 10 Easy Steps.

1. Prunes – It is an oldie, but a goodie. Prunes do amazing things for the poop-shoot. When I am feeling less than motivated, I reach for Gerber, with or without apple sauce, and just spoon feed her about 1/4 cup a day. On better days, I soak a few prunes in water for a few hours and then put them in the blender with a bit of applesauce. I have tried giving her a few prunes to gnaw on, but they are too tough and she mostly just waves them around in the air before throwing them on the floor. Giving her the soaked prunes is even less productive and way more messy. So for now, it’s pureed prunes for my girl.

2. Hemp hearts – besides being an excellent digestion aid, hemp hearts are packed full of protien (a whopping 10 grams in 3 tablespoons!) and essential fatty acids. They are tasty on their own, but The Blessing gets her daily tablespoon mixed into a bowl of yogurt or applesauce.

3. Chia seeds – when soaked, chia seeds become very gelatinous, which makes it easy to feed to a squirmy, tongue thrusting baby. Hailed as a “super food”, chia seeds are a good source of protein, antioxidants, calcium, magnesium, phosphorus, and, of course, fiber.

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4. Probiotics – keeping gut flora healthy has become a passion of mine, and probiotics are a good place to start. The Blessing gets 1/8 tsp of a powdered supplement in addition to about a cup of (full fat) yogurt every day.

5. Emphasize good, poop making foods – as I already mentioned above, every bite that I put into The Blessing’s mouth must be a non-constipating food at the very least, bonus points if it is known to make things flow. Yogurt, fruits (especially prunes, apples, figs, raisins, and the like), broths, and cooked veggies form the basis and bulk of her diet. For now, I am not feeding her any grains or cheeses at all (unless a kid sneaks her a cracker or a piece of quesidilla, which has been known to happen). I am also putting off introducing common allergens like peanuts and strawberries.

6. Essential Oils – I have mentioned before my new affection for essential oils, and this is a prime example of how I am using them to make my daughter’s life better. Heritage Essential Oils carries an oil blend called “Digestion Support”. It contains tarragon, ginger, peppermint, juniper berry, anise, fennel, lemongrass and patchouli. It smells great and is a great addition to our essential oil collection. Even if you don’t intend to buy some, I urge you to take a look at the product page at the other end of that link. There is some good info there concerning constipation, miralax, and intestinal health.

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7. Magnesium Oil – I am including this item in this article, even though we are no longer using it. Magnesium oil can be sprayed directly on the belly and rubbed in to help with digestive issues. The man at the health food store cautioned me that it can really be itchy, so I tried it on myself before using it on The Blessing. Wow! I didn’t experience any itch or discomfort, but it sure did make me use the bathroom pretty quick! I was amazed at how quickly it did it’s work on me, so I tried it again the next day (you know, to make sure that wasn’t just a coincidence!) and it was the same. Magical. I then started using it on The Blessing to great results! For about four days I used the Magnesium oil to summon the poo from the baby, and then on the fifth day, she started crying right after I sprayed it on. Thinking she was just teething (which she has totally been doing of late) I just rocked her and hummed to her and tried to calm her. Then I looked at her belly and there, right where I had sprayed the oil, was an enormous, red, angry rash! I quickly washed off the oil and we haven’t used it since. So this recommendation comes with a caution – it works but be careful with it and watch for a reaction.

8. Hydration, or in our case, lot of breast milk – Until she learns how to drink something else, The Blessing will continue to rely on my milk for her hydration. I hope to get her drinking more water and diluted juices in the days to come as she learns to use a straw. For now, breast milk provides a nutritionally sound foundation upon which her diet is built.

9. Supplementation – This particular item requires a post of it’s own and I hope to write one someday soon. For now, suffice it to say that Down syndrome is a nuerological disease that effects every cell in my daughter’s tiny body. Because of the over expression of the 21st chromosome, her body requires more of certain nutrients than a typical person. Supporting her whole body nutritionally will go a long way to keeping the bowels moving, just as it will serve to support the rest of her body as well. After careful consideration, I chose Nutrivene-D, but there are others to choose from as well. Stay tuned for more on that subject.

10. Coconut oil – because coconut oil fixes everything! Actually, I don’t know that coconut oil helps with constipation specifially, but I add it in for the same reason that I give The Blessing Nutrivene, that reason being that I believe in supporting the entire body and I don’t know a single nutritional aid quite like coconut oil. It benefits a body inside and out. A teaspoon a day can only do great things for my little one’s diaper quota.

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So, there it is. Go and free those bowels! And, please, if you have found something that works for your little one that I have not mentioned here, leave it in the comments. I am now a collector of all things de-constipating!

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!

 

 

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.