editors warning: I must, again, pre-emptively apologize for my long-winded, not well-thought-out, rambling. I've got a lot on my mind.
It's crazy to think that just one year ago today I was sporting an extra forty pounds and going through the motions of a 100% healthy, rather uneventful, pregnancy. I loved being pregnant, I feel blessed to have gone through two pregnancies so far without any of the major "discomforts" that generally go along with housing a PERSON inside of your own person.
Pre-Macy, I was and always had been a faithful and praying person. I prayed for simple/broad things, like health and happiness, etc...it's safe to say that I dig a little deeper and pray a little harder, emotionally & more specifically these days.
The biggest thing I prayed for a year ago, all I sincerely wanted from God, was for our baby girl to be born healthy. The happiness would of course be a symptom that she'd eventually pick up on.
What does that mean anyway? I'm not sure exactly what people mean when they say that they "just want their baby to be healthy"..."healthy"? Sometimes I find myself awake at night wondering if some or most people bundle genetic conditions such Trisomy 21 in this "unhealthy" category. I know I certainly did not. The thought of various genetic conditions did not even so much as cross my mind...not a single blip on my radar.
This is the image I thought of and prayed for last year at this time. Isn't she cute! :-)
(I'm so glad they removed the term "mentally retarded" from their terminology bank). Please friends, do NOT use that term - you may not know it, but it is hurtful to a large part of the population. Never did I think that this chart below would actually mean something to me and somewhat explain why my baby girl "is who she is"?
It's not as though Macy was born unhealthy...she was simply born "different" with a third copy of her 21st chromosome. She has 47 instead of the typical 46.
Sometimes I cringe when an "expectant" acquaintance tells me that they pray for "their baby to be healthy" or say "I don't care if it's a boy or a girl as long as it's healthy". As beautiful as that sounds, I can't help but wonder and just hope, from the pit of my stomach, that they do not think of Macy, and how they secretly do not want their unborn angel to have what Macy has. Never, would anyone admit this out loud, we are all born with filters (most of us at least)...but I still can't help but wonder (I am human afterall). It still breaks my heart and makes me sad to no end, to think that many people across the world pre-screen and undergo invasive prenatal testing to determine whether or not their child has Down Syndrome. As great and wonderful as medical technology is these days, is still saddens be to know that a shocking 90+ percent of all pregnancies that have this high likelyhood end in termination. JUST DISGUSTING! :-(
If this blog serves no other purpose, I hope it at least creates a little more awareness and proves that life for a Child/person with DS is normal, happy, amazing, productive and, well, this blog does not have enough room to house all of the wonderful adjectives I could use to describe these special individuals. They live, love, walk and talk with unconditional happiness in it's purest form.
Yes, this diagnosis comes with a few challenges, obstacles, delays and extra testing.
And speaking of extra testing, now that I think about it, this little bugaboo has been through A LOT in her short 11 months - what a trooper!
Starting with a FISH Blood test to confirm her diagnosis, to
low blood sugars,
ambulance transfer from one hospital to another
Echocardiogram & EKG
meeting with Genetics Counselor
Early Intervention (PT, OT, Speech & Special Ed Teacher)
Pediatric Opthamolgist appts.
Hospitalizations with Pneumonia & Bronchitis
needing to be on Oxygen
Swallow Test & Video Surveillance Study
Sleep Study (understanding her tracheomalacia a little more)
Scope with Ear Nose & Throat Doc
Private Speech Therapy
Private Occupational Therapy
Feeding Clinic at Children's Hospital
visit to the Neurologist
That's a long list, But OH MAN, I would not change anything for the world. I feel as though Macy's diagnosis simply rearranged my priorities a bit and forced me to live life to the fullest and truly appreciate each and every new day The Creator and Heavenly Father has made!
Even though her Doctor's have recommended she go visit various specialists and undergo a wide array of tests, our little Over-achiever continues to prove that she is a STAIGHT-A student...passing each of these with flying colors! She has, for the most part, a CLEAN BILL OF HEALTH...And for this we are eternally grateful :-)
As I play with Macy and distract her from the fact that she is sleepy, cranky and wants to take a nap...but I can't let her because she has an EEG today (they have given me strict instructions to bring in a sleepy child). Although, I am certain she will PASS and show that all brain activity is normal, it is still important for us to at least ensure that all is well, cross the fear of seizures, etc off the list. We may not know what this "eye rolling stuff" is all about, but at least we'll know what it isn't...and that will at least put our minds a little more at ease :-)
Speaking of enjoying every moment...let the planning of her First Birthday Party officially BEGIN! More on that to come soon :-)