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u where abby was taken after she was born after we d peppered him with question after question about what the plan was for our daughter he quietly said abby will let us know what to do next i remember thinking that was ridiculous we were at a world renowned hospital they should have a plan but i watched and sure enough abby led them they knew just how to listen and she let them know exactly what she needed abby has never wavered on that if she needs or wants something she will let you know along with that abby has a radiant joy that impacts those she come across she has a stubbornness that won t quit but a spirit of empathy that reaches out to those around her so as we head into this new frontier as we step onto the pavement of the teen years i will remind myself to listen better to her because even though i may not know all the answers to the questions that are flooding my brain i do know abby and if i look back i can clearly see that any road traveled with abby is bound to be filled with joy posted by elizabeth at 7 53 pm 1 comments email this blogthis share to x share to facebook share to pinterest friday june 19 2015 prenatal testing it has been quite a while since my last post life continues to be all kinds of crazy and days have a way of giving way to the next soon we find ourselves with a school year finished and running to catch up with all the things we had planned for summer hopefully i will fill the blog soon with some of the wonderfully fun things we ve already done but for now i want to address something that is heavy on my heart prenatal testing if my facebook newsfeed is anything to go by this is a bit of hot topic right now from what i understand there is a new test referred to as the nipt noninvasive prenatal test that is done after 10 weeks a blood sample is taken from the mother from that sample doctors can separate the mother s dna from the child s once the child s dna is identified they can check for genetic abnormalities the most common being down syndrome some in the medical community are lauding this advance in technology after all in the past if a parent wanted a definitive prenatal diagnosis of down syndrome they would have to do amniocentesis which ran the risk of harming the baby personally i have no issue with this new test what i do have a questions about is what happens after the test results are presented to parents for too long i believe that many including some in the medical profession have had a skewed view of what living life with down syndrome means for both the parent and the child too many out of ignorance paint a dreary picture of hardships and struggles far too often abortion is suggested as a better option as if to say to save everyone some pain and hardship just clear the slate and try again it will be better for everyone now i ask you parents out there how many of you have gotten through even the first year with your typical child and not experienced hardships and struggles i would wager that the number is pretty low because parenting is hard no matter what kind of child you have i once told a friend that i had an advantage i found out right at the beginning of my child s life that i don t have control over her future it usually takes most parents about 18 to 20 years to come to that realization one of the leading arguments in support of aborting children with down syndrome thank you richard dawkins is that people with down syndrome don t contribute to society what does that even mean i don t ask that flippantly but i truly would like to know what he means by that does he mean that they won t make a huge salary does he mean they won t pay taxes does he mean that they won t make the world a better place if these are his arguments i could easily find examples to refute them how can we possibly tell a person s potential by simply looking at their dna how can you speculate on someone s ability to make a difference or contribute to our society and culture by only looking at their genetic coding the answer is you can t i think that it simply boils down to fear we seem to fear what is different to not trust it to call it things like abnormal and disabled the message is clear it is wrong to be different the truth is we are heading down a very slippery slope what will happen when a genetic marker is found for autism for cancer for schizophrenia for addiction will parents be handed information on abortion and told that their lives would be too hard to clean the slate and start over so that brings me back to my original question when it comes to this kind of testing what happens when the results are presented to parents are they simply told about their option to abort are they presented with words like abnormality and disability or are they also given information about what life is like with a child with down syndrome are they invited to meet a family and gain an experienced parent s perspective are they able to spend time with a person with down syndrome are they told of the many resources available to them are they told that their child will be more like them than not my prayer is that they are given both sides of the story because from my perspective abby s story is one of a million out there contributing to making this world a much better place posted by elizabeth at 5 58 pm 0 comments email this blogthis share to x share to facebook share to pinterest wednesday december 17 2014 lessons it has been quite a long time since i last posted i ve thought about it but nothing seemed significant enough to post or the times when i would mentally begin composing something it always ended up sounding too whiney today was different today abby taught me three important lessons and considering what has been happening in our world i thought everyone could use a few reminders that joy and kindness still abound lesson 1 a new day is exciting so begin each day with anticipation this morning i woke up with a hacking cough the cold that had been brewing had finally settled in my chest and i was miserable even though i hate missing school i called a sub and settled in to spend the day resting now usually i m the first one to leave the house in the morning and dad has the task of getting abby on the bus this morning i assured jason that even with my cough i could handle it abby was ready to go in no time at all and as we walked outside she said whew it s cold let s get in the car i told her that was a great idea we climbed into the car and i fired up the heater as she with her miss piggy puppet on her hand sang and danced to the music i watched her and began to think what if i started each day with the enthusiasm that abby does she was just so happy to be heading to school with miss piggy such a simple thing her excitement escalated when she saw the bus pull up she let out a whoop and yelled my bus is here once she was out of the car she danced the whole way down the driveway singing about how excited she was to be going to school she greeted her bus driver with an exuberant good morning and i watched ms cathy s smile widen abby was bubbling over with joy and those around her couldn t help but be affected lesson 2 kindness is recognized and appreciated monday night abby had her school christmas program she was totally geeked in fact that morning when she woke up she immediately insisted that the program should come first in her day and then school she ended up doing a great job singing with her classmates there was one song though that had me laughing some of the kids were wearing a garland necklace and there was one little guy standing in front of abby who kept pushing his back so it fell down his back instead of his front abby in an effort to help him kept readjusting it so that it would lay right i watched her time and again arrange it and pat it into place just to see him push it back and start the game all over i couldn t help but think about what a little mommy she was being and that the little boy had the patience of a saint eventually she just gave up this afternoon when i went to pick abby up from school a woman stopped me are you abby s mom she asked at my assurance that i was she introduced herself she told me that her son was the little guy that abby was helping throughout the concert she had been watching from her seat hoping that her son who she assured me was short on patience wouldn t turn around and wallop the sweet little girl trying to help him out after the concert she d talked with her son and he d told her very frankly mom i was the one playing with it she was trying to help me out she went on to tell me that as they were saying their nightly prayers he mentioned how sweet abby was and then promptly covered his head with his blankets as if he were embarrassed she couldn t get over how very sweet the whole thing was the funny thing was while it was happening i was hoping his parents weren t irritated that the kid behind him wouldn t leave him alone that couldn t have been farther from the truth in the end it became a chance for two parents to witness the tenderness of their children i was reminded once again how abby s innate compassion allows her to spread joy to others by simple acts of kindness lesson 3 let others see the joy in you my last lesson came at dance class tonight it has been a long few weeks with christmas preparations and such and by the time we got to dance i think we were both a bit spent watching through the glass partition i saw abby separate herself from the class and plop down in front of the mirror she proceeded to cover her face and take the posture of i don t wanna which we see from time to time instead of walking in there for a pep talk i quietly asked the teacher if i could just sit inside the studio and watch the minute i plopped down against the wall my little performer perked right up and headed happily back to her spot she now had an audience and all was right with the world the best part for me was not that she was participating no the best part for me was that i had a front row seat to her joy she radiated it as the class did the hokey pokey and the chicken dance abby simply bubbled over with happiness and as soon as mrs katie turned on ymca she literally shook with excitement she turned to me and said mom mom ymca y m c a i can t remember the last time i was that excited about anything let alone a song as she was dancing i was lucky enough to snap a picture at just the right moment catching all that happiness that picture is so essentially abby and was the perfect final lesson for the day there is so much to be joyful about even if it s just a favorite song so why not let it show tonight as we were getting ready for bed abby said mom i m so excited about tomorrow which is something she says nearly every night i did what was expected and asked why but this time as she happily said i have school tomorrow i let that sink in a bit abby is genuinely excited because she gets to do it all again tomorrow abby is a gift in many ways to many people i m thankful that today i took the time to really see her joy and hopefully learn a few lessons of my own posted by elizabeth at 9 03 pm 0 comments email this blogthis share to x share to facebook share to pinterest sunday september 28 2014 thinking about thinking this morning i got thinking about thinking i know that s a confusing way to start but stay with me i have a point this morning abby got up early and as she has never been an i m going to quietly hangout while mom and dad sleep kind of a kid so did i but today instead of wanting to go downstairs to start our day abby wanted to hang out in her room listening to music and playing with her barbies hang on abby let s do a quick finger poke i said i had to make sure that her sugar wasn t too low and that it would be safe for her to play for a bit before she ate as i was getting everything ready for the finger poke the grumbling started in my head i began thinking about how crummy it was that the poor kid couldn t just play in her room without me having to squeeze blood out of one of her little fingers stupid diabetes my grumbling was made worse when she started asking is it a good number it s a good number c mon good number good number that s when i really started to feel bad for both of us she had to be sick of all of this stuff she has to go through on a daily basis i know that i am as will often happen my focus shifted to me i m so tired of thinking about her medicine i m so sick of having to think about what she s eating i m so weary of figuring carb to insulin ratios i m so tired of thinking by now abby was happily singing hungry like the wolf and playing with her dolls but i continued to grumble i mentally complained as i took the dog out as i got my coffee ready and as i trudged upstairs to get ready for church that s when i really got thinking about thinking or more specifically all the thinking that special needs parents and parents with sick children have to do and how we must have super brains from all the exercise they get here s a glimpse of the things we think about our kid s food with abby s diabetes i have to constantly be thinking about what she is eating when she will eat again and how much insulin she needs i know that is unique but even before her diagnosis there were a few dietary issues i know plenty of other parents who are food conscience with their special kiddos they have to think about feeding schedules gluten free food dairy free food or how they will puree their child s meal most of this isn t terrible but it does make things harder going out to eat or to the movies are things we need to think a bit more about than others it is one more thing that makes life a little harder than most social situations i for one think a lot about these i play and replay scenarios in my head how will i get her there on time how will i get her to leave once we are there will there be any of her pitfalls along the way over the years i ve learned to over prepare myself and abby for some of her triggers but there are still times when i am completely taken by surprise by her behavior both good and bad when your child has challenges birthday parties playdates and even trips to the grocery store are things you need to think through sometimes i feel exhausted even before we ve left the house doctor s appointments i swear sometimes i feel like a walking date book maybe that s the reason i can t remember birthdays in addition to the normal kid stuff like picture day dance class and school activities i need to think ahead about the various specialists abby needs to see we also keep a close eye on her health in general and will often schedule quick trips to the pediatrician since a routine bug can be a major problem for her sometimes i catch myself talking out loud to myself as i run through the things coming up on her schedule lumped into that is the mental tally we keep of her medicines and supplies sometimes i feel like we are on the phone every other ...