A little over eighteen months ago I poured my heart out on my blog as I introduced my little Mae to the world.  Call it sleep deprivation or maybe it was the pain killers I was on but I was brutally honest with all of you because that is the only way I know how to be.  I’ve been meaning to get back on here and update all of  my friends to let you know how our journey is going.

With October being “Down Syndrome Awareness Month” I thought that this would be the perfect time.  Rather than talk about Down syndrome I really want to just talk about Mae.  Mae is 18 months now, she says “hi”, “ma ma” and “da da”.  She can also sign for “more”, “all done”, “eat”, “milk”, “dog” and “sleep” . . . check out the 3rd picture – – she was signing for sleep just 5 minutes into our shoot!  She loves to eat (she takes after me).  She can put away pasta with the best of them!  She despises physical therapy (sorry Lisa).  She will absolutely flip her lid when we try to make her stand or walk etc.  She will grab a handful of your hair and not let go – – poor Grace is always within reach.  She loves music – – I think that is a stereotype that people with DS love music but Mae is falling right into that one.  She will rock to anything that resembles a beat.  Normally it’s the radio but the washing machine and treadmill also make Mae groove.  She is totally stubborn.  Despite the 5000 times I’ve told her “give it to me, put your cup down, no throwing” she still looks at me and chucks it.  She wakes up ridiculously pleasant every morning.  She is ridiculously miserable when I need to change her diaper.  She adores her siblings and they adore her right back.  She has 5 teeth and they came in in a totally random order.

To continue with my honest trend, my days are not all sunshine and roses.  There are days when I feel sad.  I do sometimes still ask “why me?”.  I sometimes think “it’s not fair”.  I do think “what if” . . . what if Mae were typical??  I would have a toddler who could talk more, I wouldn’t have 7 therapies added to each and every week.  I wouldn’t have to worry every 6 months when we have to do the rounds of routine testing for things Mae’s at high risk for.  My life would be easier . . . (yes, I know it’s totally selfish that the above is all about me)

My down days are not very often anymore but they do come – – normally they hit me like a wave when I realize what the other kids were doing at her age or when strangers stare at her with their “thank goodness it’s you and not me” face.  There really is no warning for these feelings that come and go but luckily I have learned that they do go.  I have made incredible friends who I never would have otherwise met.  Without them I think my dark days would be longer than they are.  It’s so cliche to say that she’s a blessing but honestly, she is a blessing.  I could probably write an equally long blog post about my other kids who also challenge me and cause me to have dark days – – and they don’t even have a diagnosis other than just being totally crazy 🙂

I think that’s what gets me through is remembering that each one of my kids makes me worry.  Anyone who has children knows that we all have our crying in a closet moments (please tell me that’s not just me).  Mae does certainly come with a few extra instructions and I don’t want to downplay it because it is really hard to keep on top of at times – – but that’s what being a mom is all about.  I am just doing what my daughter needs – – it’s the same thing I do for each of my kids.  I love her unconditionally and will support her and push her to reach her full potential.  I am not special (I despise the saying “God gives special children to special people”).  I am just doing what all moms do — we love our children.

Why do I tell you all of this?  Well, like I mentioned it’s Down Syndrome Awareness Month and even though I do want to bring awareness about Down syndrome the real thing I want to leave  you with is that Mae is so much for than my child with Down syndrome – – she was and still is My Perfect Mae.

She is signing for “sleep” in the below pic!!