Monday, June 27, 2011

walking cracker...

when a cracker is not just a cracker...when a little girl becomes a real girl with attitude...wants, needs, expectations, regrets, anticipation...when I found out Maddie was going to born with extra...I never in my wildest dreamed she would be the Maddie of today...then when we learned she would be born with TEF/EA I knew all was lost for me and my little girl...the girl I dreamed and longed for...when Maddie was 1 years old...I still was under the impression life would be impossible without good planning and preparing...the first year Maddie is what you would call the "perfect" baby...never cried, never whined, never put up a struggle...she could have had an obstructed airway...she would nap, play, try to suck fluids...I assumed she would always be that mild tempered...just 4 months ago...I believed we as a family would not be able to eat out together without bringing "Maddie Food"...I thought that Maddie would never eat anything EVER with crunch...just a month ago Maddie did not know how to chew and swallow...when Maddie began taking independent steps...Maddie began to blossom into a whole new child...Maddie now has a HUGE personality...she is very naughty and into everything....Maddie is what you would describe as a busy, independent, strong willed toddler...no longer does she sit there and let kiddos take things from her...no longer does she sit and watch but she jumps in and plays...Maddie loves going anywhere with us...but the biggest jump that I have seen in my Maddie...is her eating...yesterday at the pool Maddie ate a cookie a whole cookie...she took it in her hand, took bites, chewed and swallowed...independently...this is HUGE!! and today she ate a ritz cracker...not a big deal to most people...to us it has changed our world...and we could not be more proud of our little girl...
big girl

Sunday, June 26, 2011

Pole Dancing

Whatever it takes to get her to eat!! right?

Look Daddy!

Sing with me!

See ya!

Thursday, June 23, 2011

lips off...please

kissable, huggable, lovable, squeezable, and I am sure whole lot of other “ables” I could describe Maddie…however, that is because she is mine…but total strangers coming up and KISSING her…yeah you read it right…KISSING her on the head, forehead and hands…on three different occasions (within a week) three different women laid lips on my Maddie…the first time I just thought AWKWARD and complained to Chad…not knowing what to do…the second time a “what the heck” smile….and the third just a shake my head and RUN!! I get Maddie is cute and that she is now lending her smile to most everyone she sees…but to kiss her is just not right…right? I do not remember ever having anyone touch Max or let alone kiss him…last night when it happen I was wearing my “Got Trisomy” t-shirt and thought to myself  do people think she needs this doting…do they even know she was born with Down Syndrome…because let me tell you Maddie knows she is cute and sweet…just ask her and she will lay it on thick with smiles…so why is it that people touch her…when she was a baby I would hide her in my sling so no one could touch or see her…and as she has gotten older I like to leave her at home so I do not have to deal with heavy petters…but with her insist-ency of being my shadow she goes most places with me on a regular basis…so either I need to learn how to say back off…or Maddie needs to get a “do not touch” sign!

Wednesday, June 22, 2011

Marvelous Maddie...that is what I am thinking...Maddie is EXPLODING with fun...her newest things are rolling her eyes with a evil giggle...and crossing her arms with a stink eye...I think it may the cutest thing ever...yesterday she said "baa" I know not huge to the average joe...but my Maddie this is HUGE...she then said "daa baa" WOWSA...I cried...tears of joy...and unprompted she signed thank you, hungry, more, and puzzle...that is huge for the little girl that does not think she needs to sign...Maddie is loving guns...she picks them up points at you and "spits" fire...she is always swaying to the music and bouncing to a beat...Maddie loves to lip sync and she never turns down a micro phone or a mirror! can you say SUPERSTAR! Maddie really is becoming quite the little lady with covering her mouth when she coughs...and she gives kisses when she hits...we are really looking forward to summer, swimsuits and lots of memories...
Maddie with her 2 favorite people Dad and Brother

Saturday, June 18, 2011

ouch :(

I am taking ANY and ALL tips on how to help Maddie's flaky, thin, brittle nails... Maddie was walking and fell on the cement...and this is what happened...darn brittle nails...half her nail was ripped off...there was tears, screaming, snot, and more tears...poor girl...

Friday, June 17, 2011

darn park...

Baby…cute Baby…a little girl pointing at Maddie…I respond to her –her name is Maddie…girl smiles runs away…I watch as she climbs and goes down the slide up the stairs but hesitates at a BIG green slide and whimpers calls for her Dad…she comes over again to Maddie…hi Maddie…Baby…Daddy help slide…scared…she is saying all these words…she is at least a foot taller then Maddie and 5 more pounds…and my heart sunk…and I question myself…do I have these encounters to prepare me for Maddie’s future…when I look back at being pregnant and after the diagnosis…all the doctors appointments and specialists…the medication I was on to stop labor…really prepared me for today…and life with Maddie…at the park I was not sad or mad…I was just numb…trying to find more meaning in this encounter…I asked her Dad her age…he responded 2 years olds June…she is just 2…then he asked how old Maddie was…I responded 2 years old May…and then I said -I guess this puts in perspective how little my little girl is…I see her as so big…I see her as so tall and strong…and when I encounter the same age child…and get the reality of our future…then the questions of will Maddie always be this small comparatively to her peers…will she be this far behind in language….and you all know the rest…but there is always a positive these days…Maddie is just as social as this little girl…she just communicates differently…and she has more personality in her little pinky…but that could be a mama’s bias… and Maddie has no fear of the BIG green slide…she will climb up by herself and slide down head first…independently…no whimper for us…no asking for help…but I sure do look forward to the day she says mom, ma, mama or heck even Kim…

Wednesday, June 15, 2011

Maddie

dont touch my ice cream!

"see this is the eye"

Tuesday, June 14, 2011

she has a name...

Hi my name is Kim and I am a recovering bigot and ignorant sole…once was the day I agreed abortion was a woman choice…sole choice…once was the day I feared different…once was the day I teased, laughed and ridiculed fellow humans…today I am just a mom and wife…gone are the days of fear, anxiety, and hatred of myself and others…gone is the bias that if not like me then not worthy of me…gone is the hope that others will change…but with that is a new day of eternal wonder and amazement of making the “right” choice…I was one of those women that had a choice…to abort  Maddie or not…yes my fetus had a name…my fetus was alive and she was kicking…as the doctor asked me to terminate and kill her…my Maddox Rose had a name and a face…with 4-D ultrasounds…I could already envision her loveliness… so if you are just finding us…and you are pregnant and having a child with Ds or you are a new mom and just got the diagnosis…and you have been searching for answers and other just like you…I was once you…scared, sad, and hopeless…full of what ifs and why is this happening to us…but as the years have gone on…things seem to have peeled off…the sadness, the constant nagging of what if my child never does this that or the other thing…sure I still have days that I am full of fatigue because of blood tests, the “r” word, a new diagnosis like thyroid, heart, eye glasses, sleep apnea, etc…the list can go on and on…but it just seems to be easier these days…I know what is expected of me…what is expected of Maddie…I have hope that she will become the best young lady that she wants and deserves to become…I do know for sure she will graduate and she will have earned it…I hope she will drive and be self reliant…but if not…we are ok with her living with us…my daughter is not a burden to me or to others…my Maddie is a superstar with traits of a superstar…she will make you smile…she will make you laugh…and she will be a productive part of our society…not because she was born with Down Syndrome…but because she is a human with good traits and a soft heart…yes I did the big no no I read comments to the pre natal testing for Ds…that was the wrong thing to do…it was sad and I cried but I also was able to push back and understand that you cannot fix stupid…and my Maddie has a powerful sense of who is good, who is fake, and who is worthy of her time…so take it for what it is worth…if you have the choice…learn about Down Syndrome before you terminate…because if you were like me…you only know stereo types not truth…and you cannot change or bend the truth…

Sunday, June 12, 2011

charts n chances...

check out my belly!
Maddie weight's a whopping 28 pounds...and is 30 1/2 inches tall...yeah she is HUGE! she gained 8 pounds in 6 months...I know this is because of her dilation...and not having to eat baby food to survive...Maddie is back on the "normal" charts...does it matter...nope...Maddie is healthy and eating like a champ...last night we were at the lake and I did not bring dinner...so we stopped for dinner...this is totally a new thing for us...to just stop for dinner...and me and Maddie shared some yummy fried chicken...it was truly amazing...Maddie has been referred to the ENT which was known from the beginning from her failed hearing tests...so in July we will go to the ENT and the heart doctor...the ENT will hopefully find out why she is not hearing correctly, snoring, and waking up with a gasp for air....as for the heart doctor we are hoping for a no change or a healed heart...having all these doctors appointments is stressful...the what ifs go through our minds...last night I had a little panic attach with the impending blood results from Maddie's doctor visit...we have no signs of anything wrong with her...but her doctor is very thorough and makes sure she has the proper tests yearly...and lets face it Maddie was only a 20% chance of being born with Down Syndrome and a 1 & 4000 chance of being born with TEF/EA...we get that anything can happen and change....therapies start again this week...I have missed the routine that it brings to our day...and I know Maddie has missed her teachers...and I am REALLY excited to show them the huge progress she has made in 3 short weeks...Maddie is walking 100% of the time...she will ask for your hand when taking a walk....she has introduced a new sound to her vocabulary oooodaaay! and she will answer a yes and a no to the question that is asked of her...my goals for the summer in regards to Maddie...enjoy her...

Thursday, June 9, 2011

must wear GLASSES...

this is day 14ish of operation Maddie wear her glasses...the first day was awful we put them on...she would take them off...on off...on off...but we just kept on and pushed through for about 6 hours...she cried, she screamed, she pouted...but I think it is getting better...Maddie will take them off and hand them to me...I will clean them and put them back on...she now tries to put them on herself...and it is cute to see her put them on upside down and sideways...but overall Maddie now understands that she has to wear them...she has two pairs to choose from...I think that helps...overall I think I have been better about making her wear them and consistent...which of course helps...I also know...that I noticed her eyes turning in when she gets tired or focusing...I tried to ignore it...I still do ignore things in hope they will go away...I know this is something I need to work on...but glasses bring unwanted attention...unwanted comments...but...I know this is what Maddie needs...so I will do my best...today is doctors visit to check her ears and tubes...not a surprise just another accessory...

Monday, June 6, 2011

that Maddie...

Independence…was something I was very leery about with Maddie…I thought about it a lot...would she live on her own one day…would she get herself to school, drive, and then the little stuff we take for granted…getting dressed, brushing her tooth…and one by one those fears have gone to the back of my worry list…the major reason…as Maddie struggles with a milestone…and then when she masters that milestone…the confidence in herself increases…and so does my confidence in her…that someday she will be completely independent from me…I however did not think or want it to happen at the ripe age of 2…Maddie the other night was getting ready for bed…I wanted to cuddle and have her sleep with me…purely because I cannot get enough of her…but she would have none of it…she screamed and told me she wanted to go to her bed -alone…ok I can deal with that…but then this weekend…there was a whole new adventure…Chad and I were putting in some raised gardens in our yard…the kids were playing…and Maddie was happily driving her blue beater car…I looked up and there she goes…she started walking to the park...alone…all the while looking at me and nodding her head yes with a yeah yeah coming from her mouth…she knew how to get there...over the grass, to the walkway, through the tennis courts….yes it is just next door…but still...this little girl is 2! She kept pushing me away so she could do it herself…walking, falling getting up and going…. so I asked Max to help lead her there…she finally let me join in to catch her on the slide…and carry her home…she was just pooped after all that hard work! Maddie really believes she can do anything…my lesson from this…is let her do it…on her own with out me hovering…without me protecting….without me directing…Maddie once again made me smile

Saturday, June 4, 2011

Hot Pants n Ooops...

FloWEr PoWer...

I got it...in my hot pants!

WEeeeE!! Daddy...

yes! this is blue sharpe :(

Wednesday, June 1, 2011

shovels...

It is why I stopped working a career I loved…it is why I endure long thankless hours…home daycare is no walk in the park…it is fun, loud, and stressful…but it is all worth it…it is all worth being able to watch my children learn and grow…it was worth watching every milestone that Max would concur…it was worth watching him struggle to get along with others…but he has the tools to be successful in school and in life because he can get his shovel back without yelling, hitting, or tattling…he will enter kindergarten in the fall…and today I was reminded why I love my choosen life…I watched Maddie get off the wagon…walk to the park and play…I watched her grab her brothers hand for help…I watched Maddie walk to the sand pit get in and have a friend hand her a shovel…another friend take her shoes and socks off…and teach her how to play…with others…side by side…the sprinkler turned on and she got out of the sand pit and walked around it…testing the water…watching the other kids…tempting as it was she was hungry and came inside to eat…she crawled on to the deck…opened the slide door…and signed she was hungry…it seems with each passing day and her BIG 2 year birthday…Maddie in my eyes has become so much more like other children…she just seems so much more like a regular kid…she is spunky and tells you if she is not interested…she is eager to play with other kiddos instead of just watching…she understands my words…when I ask her questions or ask her to get her shoes, coat, or go to the store…Maddie is so there in her mind…it is disconcerting how I questioned her wit…how I questioned if she would make it in this big world…Maddie in my home daycare…will learn nice…but she will also learn not so nice…not because the kiddos I have in my care are not nice…but they are honest….all kids are honest and I know there will be a time I have to explain why Maddie is so darn perfect! Maddie will also learn that she has to work hard and use her words…she will learn that she is not the center of the universe…just the center of her families universe…Maddie will also learn that she has to do for herself…that no one will give her a free ride because she has such a great smile…I am looking forward to the day that Maddie learns to get her shovel back…without yelling, hitting or tattling…then she will be ready to tackle the world...