Hello 4 Months…Function Malfunction

4 months already, and I like it here. A lot.

4 months. my meatball!

Ok, so I find myself asking this question to myself all the time, “does he really has down syndrome?.” Am I still fighting all the preconceived notions I had from the past on what a child with Down Syndrome should be like? Am I in a state of denial?..the answer is NO. I just think my love for this child goes far beyond my own understanding and ability to process, my blind love for this child is a gift from God, my love this child knows no boundaries. I have fallen into a state of comfortableness with him & the diagnosis, I wouldn’t take away his extra chromosome if it was a choice and have I mentioned I like it here…a lot.

Now don’t get me wrong I welcome the opportunity to educate others about Down Syndrome, but I am still equipping my motherly self with ability to tackle often unknowing ignorance. So when I get caught up in a conversation about Grady and his diagnosis, with the questioning acquaintance, who is ever so interested in his intellectual/functional… abilities/potential, I listen to myself talk about his varying eventual delays and dumfound myself. It’s not easy to speak of eventual delays or functioning levels at this point. He is my baby right now. But I’m a realist, so I push forward with the facts and knowledge that I am equipped with.

Would that questioning aquentenance ask the mother of a typical child if they are “high or low functioning? or will you be putting him in regular school”.   As if I am a fortune teller they look at me for a response..pause…wait, wait….pause….can you say AWKWARD? My mind reals for a quick response and an even speedier way to change the subject. It makes it easier for other’s to already put him at the high functioning mark, maybe to ease their uneasiness, maybe because like me they find it hard to believe that this precious child shows no visible intellectual signs of being delayed at this point. Who knows, but really… these questions challenge my patience and bring me to the point of begging God for his Grace. My usual answer that doesn’t come so easy,  my answer that tears me up to have to explain, my answer that rests assured in God that he will provide:  Grady based on his diagnosis will eventually at some degree show a sign of delay, but at this point we are working vary hard to equip with with all the right therapies, support and love to offset them. We will not know where Grady stands until he is a bit older, so at this point, we love on him and embrace his every milestone  just like any other baby. We try to focus on today and the positive. Keeping in mind the bigger picture and goals.

So today…

Grady is smiling up a storm.

He is rolling unassisted.

He giggles assisted : i.e. mommy doing backflips and making silly faces/sounds to encourage giggles

He weighs 14lbs 14 oz. and is 24 inches long. 75% on the Down Syndrome Growth Charts. (the over-rated growth shmarts charts)

He continues to sleep through the night.

He can now make it through a full 45 minute PT session.

He has fully mastered being a lovable and happy baby.

I try not to determine (with ever Christian thread in my body) the degree of functioning of all the silly typical grown people with the absurdly awkward questions. Could you imagine. While we are on the subject are you high functioning or low functioning mam?… probably mild to moderate right? are you integrated into society yet?  Wouldn’t that be a function malfunction!


9 thoughts on “Hello 4 Months…Function Malfunction

  1. aprilnarretto says:

    there are difficult questions people will ask. I really don’t know why some ask if WIlliam is “high functioning”does it really matter…may be the only ? they can think of and it breaks the ice, I dont know. Some people used to say “he doesn’t look down’s (that there makes me nuts) so he shouldnt be to severe. I just always keep in mind getting upset doesnt educate people. I will say I have only maybe had a couple of off the wall comments I could have done without…most people see W’s smiling face and they fall in love. You know it really doesn’t matter where our kids are in the development spectrum…they are our babies, we love them and THEY WILL make a mark in so many lives.

    Grady is such a doll.

  2. Melissa says:

    I really hate the high/low functioning question too. My standard answer is that with any child, we don’t know what she’ll do or be when she grows up. We’ll just have to wait and see. And the thing is, I’m so ok with that. I just wish others were…

    Grady is a little meatball! He’s got almost 3 lbs on Claire, but I think she’ll be catching up now that she’s all fixed up. 🙂

  3. Elissa says:

    Wow. I wrote a long comment, and somehow I erased it. Argh! Basically I just want you to know how much I appreciate you saying what you do. I too am tired of the questions about where she will fall on the spectrum, what her functionalilty will be, etc. Let’s see. She is 6 weeks old, so I have NO IDEA!

    I taught for 5 1/2 years in both 5th and 8th grades. There are many, many “typical” children whose full potential will never be seen because of a lack of support, encouragement, patience and pride from caregivers (often parents). Many struggled through school so much more than any of my “a-typical” students (aka those with intellectual disabilities). It is up to us as parents of ALL children, not just children with disabilities, to help our children thrive not just intellectually, but physically and emotionally too.

    So what I do know is that I, like so many other mothers out there of both children with T21, other disabilities and “typical” kids will do, is my very best to support, enocourage, provide, and challenge both of my children to reach THEIR full potential. Not the full potential of some other kid, or the full potential that someone else “says” is all they have.

    Sorry for the long comment. I guess your post found something I needed to say and gave me a reason to say it.

    • Bill says:

      “will do… my very best to support, enocourage, provide, and challenge both of my children to reach THEIR full potential. Not the full potential of some other kid, or the full potential that someone else “says” is all they have.”

      AMEN! Nicely put, thanks for sharing!

  4. Bill says:

    As a father expecting a son with “a little extra”, I am extremely grateful that you write what you write. Thank you so much for sharing your lives with us so we can see that our children are a blessing from God instead of a diagnosis. I really appreciate your posts!

    • skiingthroughlife says:

      Hi Bill! Thanks for finding me! I spent a lot of time (and still do) reading blogs while I was pregnant it was such a help and joy to start experiencing other’s lives. I was excited to see a father (you) was reading my blog, I have a heart for father’s and their love for their children, your son is one lucky little boy having his Dad soaking up information before he is even born! Thanks for checking in and keep me updated on when your little one is born…how exciting 🙂

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