Because You Know Noah

David to my brother: Does Z (his baby) have Down Syndrome?

Brother : No she doesn’t, she’s just a regular baby

David: Noah has Down syndrome and he will have Down syndrome forever

Brother: What does that mean?

David: It means he needs to go to lots of therapy and work very hard

Brother: That’s why you also need to be there for him. Will you be there for him?

David: Yes

David: You know what, I thank God that He gave Noah such a cute smile. I love Noah.

 

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Apir Dada!

 

Sometimes I think we talk about Down syndrome at home too much. Sometimes I think that David shouldn’t come with us to Noah’s therapies and doctors’ appointments too often. Sometimes I wonder what he thinks of Noah’s classmates, of our DSAPI family and of Best Buddies. And then David pulls out this. I have underestimated how he has so far processed our new normal.

David represents to me the best of both worlds when it comes to awareness. He knows Noah has Down syndrome, he knows of Down syndrome and he understands who Noah is and how he is.  I feel that David is developing empathy, which overwhelms me.  I also shamefully realized that I’ve also been oblivious to the fact that David has adjusted so well to our new path.

Saturday love

Wrestling is one of their hobbies. Well it’s actually just Noah wrestling David heehee

 

Awareness is what David has, but of course he has homecourt advantage. Down syndrome is a big part of our family and we live with this fact everyday. What I am hoping for (and working it) is that awareness fuels action. I hope that he picks this up from our DSAPI community and our work with Best Buddies. I hope that by seeing me and Dan striving to create a path towards a more inclusive society that it also encourages him to do the same. My fervent prayer is that he turns out to be his brother’s best advocate when the time comes.  My prayer everyday is that he continues to understand and that he never resents the fact that there will be times that our finances and efforts will all go towards Noah’s needs. Or if that time comes, that he feels safe with us to talk about his issues.

I write about Down syndrome here a lot too and I hope that here in my home on the web that I have created an honest picture of what our lives have been so far -from the initial shock of the diagnosis to the start of our new normal. My IG feed of course includes Noah and I often share facts about Ds plus campaigns such as End the R Word.  I hope that because our family is out there, that at least you, would know one family who has a kid with special needs. I hope that by sharing our stories that I help demystify some things about raising a child with a learning disability.

#teamnoah

we’re just like any other family. we probably know more doctors, and therapists than a regular family but we have the same dreams and goals for our kids as any other family out there <3

 

My wish is that in the fortunate event that you are able to meet a family of a child with special needs that you look at them with eyes not with pity but with empathy. I hope that in that instance, that you will choose to talk to that family and that you will encourage your kids to play and include their child who has Ds (or autism or another learning disability) — just as you would with any other family. That you will see beyond the disability and just see the child. That you will always choose kindness because you know Noah.

 

Noah for World Down Syndrome Day 6_resized

kisses from noah <3

 

I wrote this post for World Down Syndrome Awareness Day, which was on March 21. March 21 is also 3/21 and stands for the third chromosome of the 21st pair. It is this extra genetic material that causes Down Syndrome.

Holy Moly

The only plan we made for this Holy Week is that we’ll stay home and enjoy the 4 day weekend. Well “enjoy” was replaced with recovery. Dan was in David’s words “stuck in bed” Wednesday night and the whole Thursday because of flu-like symptoms. Thankfully he got better on Friday. Friday morning though David was hot and his temp was 37.9. He drank Tempra which brought the fever down though as I write this now David’s temperature has shot up to 39.3 again. Tempra is keeping it at just 38 so Dan and I are alarmed. I gave David a cold sponge bath which didn’t really help seeing that his fever is still high. It’s just the 2nd day so we’re monitoring and praying the fever breaks soon.

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Noah is still good save for a few ant bites on his face and body. Yes Ant Bites! He’s itchy but he’s not sick and I am keeping it that way. We are targeting to gain 1 lb in 1-2 months and if he gets sick we’ll be back to Noah being just 7.8 kilos. The boy is long but he is light. His pedia and endocrinologist though would like for him to gain a pound lang so Noah won’t have a hard time with his therapy and to also prevent issues like diabetes, which people with DS are predisposed to have.

As for me, I’m still ok. I rarely get sick. I don’t know why but maybe it’s the Lord’s way of allowing me to be able to take care of the family when everyone is out of commission. Pero Lord, pahingi namang extra health din. Please?

But seriously I would love for the viruses and germs to take a break. Our family is always down with something. I am sick of the family being sick. And Dan, we really need to schedule your executive check-up ASAP.

Haaay. Hope your easter holidays are faring better.

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Oooh Monday

As much as I hate cliches, Monday always brings with it a certain heaviness that I can’t seem to shake off. Even if the weekend was productive and restful, whenever Monday rolls in I feel bleeeech.

Do you feel that way too? I would love to hear from those who embrace a new week with enthusiasm as I really need help in brushing off the Monday blues.

For now, I console myself with powerful positive rah-rah-rah quotes. Fight!!!

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Plot Twist!!! Happy(?!) Monday everyone :)

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mind museum taguig

Hey moms and dads! Do you want to win 4 tickets to the Mind Museum this summer?? The mechanics are simple and are embedded in the Rafflecopter widget below. In case you missed it, I posted 3 great reasons to include The Mind Museum in your Summer itinerary at http://manilamommy.com/mind-museum-bonifacioglobal-city/ Now here's your chance to win 4 Tickets to the Museum: a Rafflecopter giveaway If you can't wait and you want to buy tickets for your family, you're in luck because tickets … [Continue reading]

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Mind Museum David

I've always been a fan of the Mind Museum and I've written about them a number of times here at the blog. So I was thrilled when I got to go to the Mind Museum's Media and Family Day last March 22, 2014.  I was excited most of all for David who is at that age where every other sentence that he says begins with a "Why....?????" The event began at 1 pm and we were ushered into a hall where there were lots of booths that showcased the different upcoming exhibits and summer activities of the … [Continue reading]