Santa Baby...

year in review...

I could sum up 2010 as a roller coaster of emotions and wasted energy…this year I figured out most everything I have worried about has been for nothing…stereotypes have fell by the waste side…new realistic assumptions have emerged loosely…and I have bonded with my child…I realized this “usually” happens within the first hours of a babies life…but bonding does not happen when you are in the NICU unable to touch your baby and then dealing with the unknowns of having a baby that was not in your dreams…it has taken me 2 years to come to grips of having a child born with Down Syndrome…it has taken me two years to love her completely for who she is…Maddie got sick this week…she was having troubles sleeping and breathing…a couple of months ago I would have just medicated her and put her in her bed and get the sleep that I thought I needed and the depression demanded…this week I realized I held her for 48 hours straight and made sure she was going to be ok…yes it is “just” a cold and ear infection…but for Maddie it can turn bad fast…I want her to be ok…I am addicted to my Maddie…I cannot wait to see what she will teach me…I cannot wait to love her and hold her…and get a glimpse of her infectious smile…as my fuzz has lifted I can enjoy and marvel at the GREAT strides (milestones) and celebrate them all…in 2010 Maddie has mastered rolling over, sitting up, army crawling, 4 point crawling, bear crawling, pulling to stand, walking with assistance…Maddie drinks only from a open cup or straw cup…she is eating eggs on occasion and still learning to chew and swallow…at 19 months Maddie finally got a tooth…her first tooth is a shark tooth located on the bottom front…and she is popping out all 4 molars as we type…Maddie is still on the “normal” growth chart…I am so excited she is 1% for height and 8% for weight…Maddie weights a whopping 20 pounds and is standing 29 inches tall…she is such a BIG girl! on the Ds chart she is 25% for height and almost 50% for weight...Maddie has a hand full of words and signs to help her communicate her wants and needs…in 2010 Maddie and I have come to an agreement that she will not she will not give up on me and my issues with accepting the unknown and change…and I will not give up on her and just be…smiles to 2011

Gingerbread FuNNzzOo!

look what we are doing...

this looks yummy...

ok I'll stop touching..

 

ok maybe not...

do not catch me...

To say I am not a little sad…would be a little lie…I am bummed that the little boy that I take care of is catching Maddie…he is 10 months younger then she is…and he is 4 point crawling-- perfect…better then Maddie…he is pulling to stand, and assisted walking--within days of him scooting forward…so I got her little walker out and had him show her how to use it…she just got mad at him and started yelling at him…her little whhoowhho and shaking of the head made me think there could be some boat language (cussing) in there…so she came over and knocked him down and took the walker away…they are the same height but she has about 7 pounds on him…so she sits on him at will…which is every time I turn around…Maddie has begun chasing him with not so good intentions…I do believe cognitively she is ahead of him…she knows more signs and understands our words with some direction…I always kidded with his parents that they would walk at the same time…but I thought my girl would do it first…I am scared and sad that she will not…that she will be surpassed by a younger gent...I know not to compare…but it is so hard when it is so in my face day in and day out...the delays that are there…and the worry that she will never catch up…will she catch up?…I am not thinking she will…I do not think catching up is our reality I think it will always be on Maddie’s timetable…and that is hard for me to take…my Maddie can gurgle and blow bubbles…and she does give the best hugs and licks…on that note…Maddie has begun to joke with us with her tongue…she sticks it out to the side then laughs! And will do this for a long time making us all giggle…Maddie has a great personality and I am excited to watch her grow and see who she becomes…but always in the back of my mind I am thinking what if?

SaNta FuN!!

hearding balls--CRawLing BeARs...

smelly anthem :)

Maddie is to sChOOl for CoOL! have you ever heard the song “Raise your Glass” by Pink? I love it! it is our anthem for our family…I think we all need an anthem and this is ours…so it got me thinking of some of the misconceptions that were told to me when we had Maddie…one that has always scared the s*%# out of me is…that Maddie will not know to say “bless you” after a sneeze…that was an example that was given to me of her future cognitive delays…but I see that this was COMPLETELY wroongoo! because my little Maddie knows to laugh after every fart…yep! and we could not be more proud…when she farts or when someone else does it…with out prompt…insert a giggle…this is a skill that Chad and I feel is a true milestone!! so with that I am confident that my Maddie will know to say, “bless you” after a sneeze and she will be able to do much more with out a prompt…prompts are very important in our world and I am not trying to down play them…but with Maddie-- if I have learned anything it is to go with the flow…to celebrate EVERYTHING! even the most juvenile!!

get a little extra...

I found out around 6 months pregnant that Maddie would need surgery immediately after birth and that she was going to be born with an extra chromosome…I remember the doctors telling us different scenarios but never a conformation of what exactly was going to be done after birth…we knew Maddie did not swallow amniotic fluid…we knew that something was going on with the connections of esophagus, trachea and stomach…but we did not know much else…I remember always asking and getting the we cannot tell until she is born answer…when she was diagnosed with all this the reaction from friends and family was the same…”oh no”…”I am sorry”…”I am so sad for you”…and horrified I am so glad it is not me looks…one person even said that she would not be able to keep going through with the pregnancy…I found that comment relieving and truthful and that was refreshing at the time… but as time went on…and Maddie was born and has grown…something that was sad in the beginning became ordinary…she became just another toddler…she is no longer looked at with sorry eyes by friends or family…but looks of hope and amazement…Maddie seems to bring a smile to everyone…she has an infectious giggle…and mojo that does not quit…through all of this…I hope someone will take away and understand that having a kiddo with a little extra means you get a little extra…and what could be better…everything that I struggled with in the beginning…the unknowns of Maddie’s health…her endless medications and doctors visits…have become a routine…something we just do…and has become our “normal” way of life…last year at this time was some of my darkest days of depression and anxiety…I am thankful for the people who stuck with me and encouraged me to find my way…it is snowing today! and starting to look a lot like Christmas….it is a perfect day and I am happy I got to experience it…

rockin maddie

Maddie has begun a new phase…a whining, crying, I am so darn cute phase…she has become so lazy that if she is playing in my bedroom she will cry and scream until someone goes an gets her (there are no tears)…and it is usually Max who goes and gets her…she can use a variety of different options to move herself in between and all around the house but her favorite is Max…I am not sure if this is a precursor of what is to come…so this is Max playing with the Maddie...



Maddie and Max RoCkIng!



Maddie LuVs it soooo much!



see he will do anything for me!



why are you taking me away?



Mondays...

MoNdAy AlrEAdy!

maddie's first luv...

did you know that SkiTTles are the ancestor to the M & M’s -- Maximus Dec. 2010

sad sad went away...

For about a month or 2 now…I have been feeling different towards Down Syndrome…I do not hate it as much as I used to…I am not scared of “it” at all…I have a full grasp of the risks that are involved for my little girl and I understand it is a game of percentages…I know and have a satisfied feeling that I have actively participated in all aspects of Maddie’s health and development…and I am ok being Maddie’s mom…I am at peace with her…I know 2 years...it took me 2 years to get here…yes it did! And I am ok with it….Chad had this HUGE picture made of Maddie…and it is sitting front and center in our home…it is beautiful…but when I saw it…it took me back a minute...I thought is that really my daughter…you can see the Down Syndrome in the picture and is simply put --Maddie…I wanted to get worked up about it…but I didn’t…I just looked at the picture and said that is my little girl…and I am lucky to be her mom…I am sure I will have my moments…but that is it they have became moments not days and weeks…of depression…this weekend we cut down our Christmas tree on the mountain…it hit me like a ton of bricks my state of mind was not so good last year…I was trying to put on a happy face...but I was not happy I was not secure and I was not ok…I was depressed; I was sad…I think I felt pressure to put on a happy face for Max and others…thinking back I  am not sure I did a great job of masking the sadness…I ran into an old friend about a month ago and I cried as told her about Maddie…I hate that I did that…because it was not that I am sad or embarrassed I am just done…done with my pity party…done with being sad and angry…so what took Chad 24 hours to get to his “ok” place…it took me almost 2 years to say…Maddie is my daughter and that is all that matters…

life of a "it" girl...

Life of the PaRTy! that is how I would describe Maddie…she will laugh at all your jokes…dance to a good beat and head bang to AC/DC…she LOVES to smile, laugh and scream with excitement…she is ALWAYS where the action is…and she has the personality that you want to hang out with…she listens when you talk and gives back great advice…and she is always willing to share ice cream and sweets…she open mouth kisses with a little tongue action...my girl is an “it” girl…and she is always followed from the moment she walks through the door…people are ALWAYS watching her…smiling and wanting her to notice them…she of course greets them with a wave and a head nod…but do not get to close…she does not like to be touched by strangers even old ones! she prefers an arms length distance…our Maddie is always the life of the PaRTY…

got patience?

I know I have been on this subject for awhile…but I just cannot seems to push through…I take care of a 7 month old boy…he is amazing…he just does things…he chews stuff and it goes down his throat all the way to his tummy…he sits straight up and is already side sitting…and today he 4 point crawled…not army crawled 4 point crawled…then not 2 minutes later he was kneeling up at a play table on his own! it is so fascinating to see how kiddos just do things…how they just know that they should sit up and crawl…how instinctually it is there and seemly effortless…then we come to my MaRVeloUs Maddie…who is turning 19 months old…she cannot chew and swallow…the connection is not there…last night she choked again…and again it was harder then ever for her to throw it back up…items seem to lodge very easy these days…it was ground up turkey…a number 2 gerber puree…large motor she is doing great --- for Maddie…she prefers the army crawl because she is lighting fast like a snake…but she does 4 point crawl consistently when she is in search of something she wants up high…she climbs like a champ…and is using the bear crawl more and more…but she had to do all those steps to get to walking…army crawl, 4 point, and bear crawl…WOW…what I did not know before I had my Maddie….she is cruising like a champ….but she should be walking maybe even running…and she should want to…not me having to entice her with items…like chocolate! I am just speechless when it comes to how hard my child has to work…how she has to watch, have her body put in the position and then practice, practice and then for good measure more practice…I wonder if this is how it will be…hard work and lots of repetitions…will this be the same for her academically and for common life skills…the patience I will have to find…scares me….

she is a toddler…

by definition I suppose Maddie is a toddler…by stature not so much…by attitude most definitely…her age is something I struggle with…she is almost 19 months old…but I do not see her as this age…I see her as a baby still…as a fragile baby…but she is far from that fragile baby…she is best explained as BUSY…she is very content getting into everything and climbing on things…and throwing attitude when she is not please with something…Maddie is defiant at times and a lover at times…she says “I do” to let her do puzzles and color on her own…I feel I hold her back from things…I think she is not big enough…I think I sometimes subconsciously keep her from moving to the next step because I want her to stay little and prevent her from getting old…into the “unknown” place…I want her to stay a baby so she will not become the older person that I fear…I am scared to let her become a adolescent , a teen, a adult…I can say the right things like I work with her always and celebrate every milestones…but inside I am not celebrating I am sad and scared…this is all stemming from her making HUGE steps in walking…she began the bear crawl and has mastered the 4 point crawl…she is standing for seconds by herself…and walking with assistance…but this is just so much independence…so much toddler…and I am not sure I am ready….

practice...maybe?

Today Maddie was yelled and pushed down at by another child…for knocking down his blocks…I was angry, sad and scared…I snapped at Maximus and said “you never let another person treat your sister that way”…he said “ok” and move on with his playing…Maddie is 18 months old and I feel such pressure to make sure the world adores her…that Me, Chad and Max stand up for her - promptly…but I am still a professional and I took a deep breath and I talked with the other child and explained that we do not treat people this way and I had him apologize to Maddie…in the back of  my mind this was a HUGE deal because I am learning/practicing now how to defend my daughter…I thought to myself is this the way I will handle this situation when she is older…will I talk with the people that are not being friendly? will I yell at them? or will I cry and say nothing? her spirit is what I fear for…Maddie is so little she is like a cute little package…she sits with her feet crossed and her hands in her lap just looking as perfect as can be…and I am bewildered by my reaction in my head to the injustice I see happening to my little girl…a few short minutes after this happened I saw her crawl over to the block structure again…the child nicely said “no no Maddie…you play here”….Maddie responded “no” and took his blocks and pulled them behind her as if to tease…she was instigating the play and interaction with the other child…I was then pleased with her development and attitude to be naughty and humorous…this in lies another problem…do I allow her to be naughty to others? Because I am trying to change the stereo type of “nice” that goes with Down Syndrome…I know what the answer is… that I need to treat and discipline Maddie the way I treat and discipline Max but she seems to me to be such a delicate soul….I think this could be trouble..

good read...

I am in the midst of a book title “For the Love” by Gina Favazza-Rowland (thank you Becca from the Bates Motel)…I am halfway through it and I am in a constant struggle of thought in my head…this book is the story of 2 sisters one that was born for the sole purpose of taking care of her older sister that was born with Down Syndrome…this is a very different book then I am accustom to reading about regaurding Down Syndrome…it is so NOT “Gifts”…which I am relieve because there is nothing I cannot stand more then the fairy tale ending that is not happening in my world…so far this book is not telling me how great life will be because I am that “special” parent…and how blessed I am to have Maddie in my life to show me how much I was lacking before I had her…with that said I LOVE THIS BOOK!! It is real and gritty and I have to stop myself from reading it to fast so I can internalize the message…to am trying to understand the in depth dynamic of these sisters…it has made me cry and has scared me to pieces…but it has also made me re-think and challenge myself and my views about Maddie…I am not scared of Down Syndrome…I am scared how society views Down Syndrome….how society treats my little girl…I am scared of the stares and the whispering comments…I know Maddie is cute now…but she will be 30 years old someday…and that is what scares me and keeps me up at night…I am rethinking how I use words idiot, spaz, etc…if I am not tolerant of the “r” word how are other groups of people tolerant of this language….disabilities is something she talks about in the book…she refers to her sister has having "different abilities"…I like that…I am also seeing something I have not noticed…in the book Gina the older sister does something anything…and Sarina the sister with Down Syndrome copies her…EVERYTHING she copies…and this is how she teaches her to be self reliant…the other day at he dinner table Max was drumming with his hands soon Maddie was…she was copying him…he was drawing on the dry erase board…soon she was…and today he was playing Wii and soon Maddie was…with the same exact motion and holding of the wand…it was amazing! Maddie is repeating words to us-- there, I do, bath, no….for sometime and consistency they are not complete words…but we understand them…when I think she is not doing something I want her to…she is simply observing and then she will do the task….this book is making me think and take notice….I cannot wait to finish it!

need sum???

 always disappointed when she sees me walk in and ruin her fun...

21 smiles...

Today I realized that Maddie makes me smile…a lot... like every time I am staring at her…I stare at her a lot because she is just so darn cute and funny…and unpredictable! So I thought it would be fun to try to get to 21 ways she makes me smile…
1. head banging to the alphabet song
2. how she raises her hand and announces she has entered the room
3. how she screams at me sitting under her monkey chair
4. playing in the toilet
5. playing in the refrigerator; removing items and putting them back (sometimes)
6. closing every door I have opened
7. pulling my face in to kiss me
8. giving GREAT BIG hugs
9. giving lick kisses
10. tackling Max
11. following Max everywhere
12. escaping out the patio door...even in the snow
13. singing to wake up in the morning
14. singing and head banging in the car
15. dancing to commercial music
16. talking at me with such motive and attitude
17. raising her hands to be tickled before bed
18. jumping in circles and giggling while in the johnny jumper
19. when she sleeps
20. when she kisses her baby and loves on her
21. falling in the bath tub while yelling and signing bath
Maddie is a SupERSTar…and today I am so very thankful... (note: my list could have gone on and on!)

boobtube ;)

  I love the TV show “Parenthood”…on NBC…. one of the families it highlights has a little guy with Autism…and there family dynamic; struggles, joys, and everyday life…. it is so good…last week the dad, son and grandfather were in the grocery store getting ready to check out…the man in front of them was in an express lane with to many items…the boy with Autism commented and started to put the guys stuff back in the cart…the man was so upset and began talking under his breath about the boy…the dad asked him what his problem was? And the man said if he could not control his kid and teach his kid some manners…and then it came the whopper of words was used…. insert “r” word…the dad punched the guy…the dad is not a guy you would think would ever punch a person…. but he did and the dad said it felt good…sometimes I think that way…when I hear ignorance…I wonder what I really would do in that situation…. would I cry, yell, hit, laugh out of fear and frustration…or just walk away…it was very thought provoking…I know that our day will come when things are said….I just hope that day I am confident and cool and teach instead of react….also on the TV front and let me CLEARLY state I am NOT a fan of Sarah Palin…but I did tune in and watch her new show on TLC…so I could see her little boy born with Down Syndrome…I was so disappointed when they did not show much of him…they showed him very briefly with a caretaker waving goodbye…I think this is a perfect time for her to help with Down Syndrome awareness…I would love to see a typical day in his life…what they do for therapy and what resources they have….I know I will not tune in again...but maybe someday she will get on board with a cause that is worth talking about…

MoJo...where?

I am not sure when it happened…but I have seemed to have forgotten my parenting common sense, parenting mojo, and/or even parenting intuition…I am not sure where it went…I am not sure how to get it back…and I am not sure when I lost it…so the other day while obsessing over the Down Syndrome developmental chart I realized I have not even thought…not even for one minute about teaching Maddie her body parts…REALLY…I am not sure when this brain fart happened…but I am beside myself…I have worried about eating, pooping, surgeries, digestive track, thyroid, cancer, teeth, 4 point crawling, talking, walking, and what strangers think…but not once did I think of Maddie knowing her head, and all that encompasses the face, shoulders, tummy, butt, legs and feet…what kind of mother does this…this is when I know I have to get my head on straight and stop thinking of everything the MIGHT happen…and that she is prone to HAVE happen…and start just living and listening to my inside voice and common sense…and stopping the pity party within me…this is a surface issue…I get it…I know that I have been so confused and burdened with not knowing what is next…is Maddie going to choke,  will she have surgery, will we have to be apart as a family, and so on….that I have failed to just live….I have been contemplating not blogging and trying to normalize me…by me writing and reading it just seems to enforce my worries and frustrations…but on the other hand blogging makes things better because I understand I am not alone…blogging is were most of my questions are answered….I often wonder if I just pretended things were ok…that I would begin to think everything is ok…I have good days and bad…and I know that blogging is my ONLY outlet…no one wants to hear my rants or concerns…because I am suppose to be over it…which I am over most things…but I wonder if I will ever wake up and not think…holy shit I have a child with Down Syndrome and I wonder what our future holds….

Maddie taking a stroll...

Make an on-line slideshow at www.OneTrueMedia.com

scared option

When I was pregnant with Maddie and we knew she was going to be born with an extra chromosome…I searched and scoured the internet in regards to the amino synthesis being a false positive…I searched if there was different types of Down Syndrome…and if people that were born with Down Syndrome had different degrees of Down Syndrome…now I see that I was scared, pissed and very lonely…and did not understand a thing about Down Syndrome...this was before I found blogs and the network of friends on facebook…in my searching I just wanted Maddie only slightly to be born with Down Syndrome…I know this sounds silly…but when I first saw her I said she did not look like she was born with Down Syndrome…and I secretly loved it…I thought maybe she just did not “get it”…that something happened and the amino was wrong…then Maddie started doing things in the NICU and the nurses would say that it is good she is pissed and not happy about being poked….that it meant Maddie was a “higher” level of Down Syndrome…then we got her home and she was relatively healthy and she was on mark and on track with milestones for a short time…and again I thought she is so “high functioning”…then around 6 months I started noticing a lot of subtle delays…and more Down Syndrome features…again this scared me and I began to withdraw…and that is when I began staying at home a lot…I used the excuse I did not want Maddie to get sick…or I did not want people touching her and compromising her…so when Maddie turned about 1 year of age…I began to resent people that referred to Maddie as “high functioning”,  or that she seems to only have Down Syndrome a little…that is funny because Maddie has an extra chromosome and there is no getting around it…she is neither high functioning  or low functioning…she is simply Maddie…so the other day I read about the developmental chart for Down Syndrome…I have been having a hard time lately anyway…because of the little guy that is 6 months old that I take care of…he is showing me just how much Maddie is delayed…just how much Maddie is behind the “norm”…so again I am scared…I feel like there is a 2 ton weight of “I do not know what I am doing” on me…I cannot believe where some of her milestones are expected…independently walking down stairs holding a rail alternating feet…6 years old…I cannot wrap around the fact that I have Maddie…that she really was born with Down Syndrome and what that really means to me…Max has began asking why Maddie does not do some of the things that some of our baby friends do…and I do not know what to say…I just say --she will…Maddie will get there- we just have to help her…then my mind wonders…and again I am facing the huge responsibly that I have before me…being Maddie’s mom is not just loving her and being her cheerleader…because that is a given…but it is making sure she gets the best teachers, therapists, doctors and community…and holding myself accountable for her learning what ever it is she needs to be successful…it just seems really scary to me…when failure is just simply not an option…

chewing therapy...

FEED ME!
Maddie is telling me she is hungry...sitting under her monkey chair!

I am learning to chew! chicken bone anyone? anyone...

2 of hearts...

Sometimes I go to a different world when I am with Maddie…it is so peaceful…it is close to perfect-as perfect can get…I like that place it is where time slows down…it is time that I can enjoy her and that she can enjoy me…I hear nothing but Maddie’s sweet sounds…then the bubble pops…I yearn for more of this time…I am not sure if I struggle with Down Syndrome as much as I struggle being a parent of two children…they are equally divine and wonderful children…but I become sad when I cannot give them all that they need…it was a hard adjustment when Maddie joined our family…because I needed to cuddle her and sometimes I had to put Max on the back burner…sometimes when I read with Max…Maddie wants to join in…we of course let her…and Max puts aside the temptation to get frustrated that Maddie takes over the book…he is so patience with her…so kind…he is 5 years old and already making sure she does not fall…Max used to be the center of attention…and very much demanding of people’s time and attention….but he is now more calm and quiet…people would say hi to him before Maddie came…and now they bypass him and go straight for Maddie…he does not seem to notice but it sure gets to me…he is equally as great…and he is equally deserving of a simple smile and hello…I want so much for my children…and when we step out into the world it is so un-predicting how people will treat both of them…how they will react to them…Maddie who is sweet and ever so giving of smiles…and Max who is sweet and wants to share a story….sometimes I think I have slowed down so much compared to the rest of the world…that I am no longer able to relate to the world…

one day...

My typical day…great idea Unforeseen Gifts…aka Erin!! I am always wondering what my bloggy friends are up to in there day…are they busy? is it quiet? I wonder how doctors appoints and IEP meetings are going…and if they are achieving any big milestones…this is my new world full of great kiddos and great moms that are like my Maddie and me…and it is nice to share the sibling aspect to better understand my Max…I learn from my bloggy friends…I lean on them for advice and guidance on this unknown journey…our days are very typical and routine! and we are VERY lucky to have our therapist friends come to our home and our environment...
- up before everyone else…and to the gym
- home to get ready for my day with a hot cup of coffee
- my first little daycare buddy arrives at 7:30 am
- give Maddie her meds and first feeding
- the daycare friends arrive and breakfast making begins (8 kiddos in all)
- feed Maddie
- first therapist arrives
- arts, crafts and play for the other kiddos
- Bookmobile a library on a bus comes to my home
- lunch time feed Maddie
- feed all the other kiddos lunch
- get Max to wash face, brush teeth and dress
- off on the wagon we go to take Max to school
- happy nappy kiddos!! me clean!
- kids wake up and Max walks home from school
- snack - Maddie self feeds
- play, play and play some more!
- say goodbye to our friends for the day
- clean
- feed Maddie
- feed the rest of the family
- therapy (play) on our own
- Maddie to bed
- Quiet time
- off to bed we go
very routine and ordinary…but it is a good life…and one we like to keep simple!

HaPPie...

Maddie is so happy…she is just so happy…why does this drive me BONKERS! It does…I am not a fan of this phrase…I know I am to sensitive…and they are probably making a observation and just simply stating what they see…I get it!! REALLY…but I still cringe when it is said…I have begun to hear it more and more…I want to ask why…why do you think she is happy? What made you come to this conclusion…because Maddie really is not that happy…she is VERY opinionated! She is learning new ways of getting mommies attention and many of them have to do with yelling, crying, and pulling hair…so happy is not what I would use to describe Maddie…I would describe her as curious, funny, passionate, naughty, BUSY and into everything! She is on the go and is like the energizer bunny! She is always trying to escape out the patio door! Or playing in the toilet…and when she is denied the outside or the toilet…insert screaming! So Maddie HaPPy…only for the brief moment that she is showing you her new trick of waving hello or goodbye!  

good jinx...

Maddie seems to be in an explosion of development…this scares me…I am excited…and we celebrate…but I am scared…I am scared that her milestones will not take…that she will go to bed and she will not do it again for months…today for her OT she 4 point crawled the whole time…and she has been doing it for me more and more…2 weeks ago she began bear crawling and today she did it again…and then the biggie…she is cruising (walking with assistance)…I hope she does not stop and I have just jinx her! but with Maddie it seems we go 2 steps forward and then 5 steps back…she also got a tooth…YEP! A tooth...it went away for a couple of weeks but now it is back and has been front and center for a couple of days! Then when I thought she was choking yesterday I found another tooth…in the back of her mouth a molar! Holy CoW! Maddie is a RockSTAr….

4 point crawl



Bear Crawl

I do not try to be negative…but Maddie just does not do things…we have to work at it and practice it…and sometimes she will do it on a regular basis…and other times she will not…she will just suck her thumb and look at me with those baby blues…I tend to push Maddie harder then I think I should…I expect so much…from her…but I expect more from me…her development is not just my business...we have a team working with Maddie...and I have put pressure on myself to make sure my little girl is doing what is expected...sometimes I feel I am just not doing enough...but today Maddie RoCKeD it!!

Pureed Jell-O!

REALLY!! That is what we have to do…puree Jell-O for the Maddie…it is funny…and it is good…she has been signing more and putting her hands to her mouth to eat…vigorously with some loud screaming at me…so I decided to let her have a treat…it turned out to be great…she gets to practice self feeding…and experience cold, smooth, squishy, and she is happy…

Halloween-eee

Max is a STRONG bounty hunter! and Maddie a flitting BUTTERFLY!

Chasing chocolate!

LOVES chocolate and peanutbutter...

let me fly...

check it off...

After Monday I have a weird peace…I know strange…again I was put back in my place…I was reminded of the control I do not have…I thrive off of control and schedules…I love yellow post its….I love lists…I like checking things off…and I get excited to organize and plan things…it is safe to me…and I like the predictable…my whole life I have pretended to love spontaneity and surprises…it was sexy to me…I always told myself that I was good at change and comfortable with it…but I am not ….I hate the unexpected…and I hate when my schedules gets off…I do not like when I do not have my weekend planned out…so I have excepted that Maddie is NOT a check list…that even when she reaches a milestone…I have excepted it may only be for that point and time…and that she may not repeat it in 5 minutes or an hour or even the next day…she did have a tooth for one day…it is gone again…she did eat noodles for a week…but that is now gone…and she bear crawled last week but not this week…and she is currently moving her little legs in an attempt to walk…but I know this is months maybe a year away…If Chad says one more time...I do not care how long it takes Maddie to do anything…I think I will hurt him…my list of to dos for her is getting VERY long! But I have a yellow sticky to remind me of PATIENCE!

no teeth...no solids...

On Monday night Maddie choked…on a noodle…a baby noodle…it was different this time…the sound…the expression on her face…I knew it was not good…I took her out of her chair…started the process…her colors were not good…I ran outside calling for Chad…he started to try to make her vomit…she began puking and stuff came out…she started asking for more food…so I gave her some pureed green beans…again she began puking…so we began the process of getting Max ready to go with friends…and us heading to the ER…you see this is our new “normal”…to make sure this was a worthy trip to the ER we gave her some milk…yep…she puked it up…nothing was getting down…so we dropped Max off and we headed to the hospital…on the way there...Maddie perked up and began talking and just acting good…so I gave her some water…and there in the car I had to pull her out of her seat and make sure she did not drown in the car on bottled water and she puked…this was me not thinking…this was me thinking I could away with NOT going to the hospital…we arrived and we sat for 2 ½ hours in the waiting room…finally we went back and a doctor saw us…he of course had to put fluid down her and she again threw it up…this is going on 4 hours with having something lodged in her throat…and us powerless to hurry up the process…we could have been in Denver with her doctors….anyways x-rays were done and it confirmed the lodged noodle…surgery…yes that is what I said…Maddie at 12 am was put under and scoped with strange surgeon that we were not familiar with…the surgeon was awful and this is when living in a rural area is not a good thing…by the time he got in there…the noodle was gone! really…ya think…of course it was gone…6 hours later of her coughing uncontrollably…braking capillaries in her face and her acid reflux making her arch and throw back….the noodle was gone…my baby was put under…and then at 2 am they wondered why she was not waking up from anesthesia…so they admitted us to the hospital…at 8 am her pediatrician walked through the door…I was so happy to see him…I knew we would be going home…after this I have realized a few things…I love the doctors that have been with us from the beginning…I know they know Maddie and what there limitations are…I hate that Chad and I know more about her medical issues then the people that are trying to be the doctors and nurses in our area…and I know that this is our new “normal”…that Max knows that when Maddie has to go to the doctor he goes to friends homes…that he may or may not come home that night and sleep in his own bed or see his family…and Maddie knows that she just has to survive…with poking, prodding, and people that can only say….”you are so cute”…I know she was thinking…who cares if I am cute…just help me…just do your job…Maddie is doing good…she is back on pureed only foods no chunks…18 months no teeth and no good food…after Monday it reminded me to slow down…AGIAN…this is not a race…that Maddie is not the parent I am…so when she is throwing a fit to eat with us and our foods…I have to say no…I have to give her things that she cannot choke on an hurt herself…with every choke I understand there is a possibility for surgery and for repair of her esophagus…so today I slowed down…still frustrated with our local hospital and doctors…and relieved that Maddie is alive an kick’ in…

Bounce

coming back from having a child is and process…not only is it external but internal…with Max I was a first time mom and dove head first into it…I loved being a mom…and we never left him not once with a babysitter until Maddie was born…yes that is crazy to look back on that time…we included Max in everything we did…if he could not be a part of it we simply did not go…I am not saying this is for everyone…but we have no family around to help…we have close friends…but I hate to inconvenience them! so coming back from having Maddie…has been different…it has had its ups and downs…since we have had Maddie we have had to ask for help from our friends to watch Max while we do doctors appointments for Maddie…he does not mind and seems to enjoys it…he even said to me while I was getting really nervous to leave him…”don’t worry mommy you will be back to get me”…so a few weeks ago Chad asked me on a date! and I said yes…this is huge and it was a great time…we got a babysitter…a young women that I love and that I have known for many years…she is a manager for a special needs residential home…and she has a gift with kiddos…with that date I realized that I have pushed many people away…friends, family and possible friends…I do this because I am not sure of who I am….I cannot guarantee my mood or my reactions….I cannot guarantee that I can lift friends up if needed…so it is easier to keep my circle very small and predominately virtual….I am proud of myself for starting to care about me again…I have been working out consistently since I had Maddie…and I have started get my hair done…and tan a couple times a week…I know it is not healthy…but it makes me feel good…and I need that more then anything right know…I want to bounce back to the person I was…I want to put on my blonde attitude and pretend not to notice or care…I want to giggle…I want to shop…and not worry about the next doctor bill…I am not sure if this has to do with being a mom or being in my mid 30’s…or both…I have also made an effort to smile at people I do not know…bouncing back from having children…special needs or not…changes you…I can say I am different then I was 5 years ago…I am less selfish and more at peace…

fingers n toes

I remember there was a time that I would say… I just hope my baby has 10 fingers, 10 toes and healthy…so when Max was born…Chad said he counted them and he was perfect…I was so thankful…that Max was perfect and healthy…he of course grew into a 5 year old…perfect is gone! when Maddie was in her early stages of my womb…I remember saying that again…I will just be thankful if my baby has 10 fingers, 10 toes and healthy….then the news came that Maddie was going to be born with an extra chromosome and not so healthy…that saying faded and I did not repeat it again…it was no longer important…and it sounded just plain silly…what became important…was that she would live…not necessarily healthy…just live…to say I was naïve is a complete understatement…so today when I was reading and a person stated that they were thankful that there child was going to be born with NO chromosomal abnormalities…I was sad…I was pissed…I was because I think why are they so thankful not to have a Maddie? So I have to go back to before I had Maddie…and how sad I was…sad because I did not know better…sad because I was so short minded…I get that people will always hope and wish for a perfect healthy baby…it is normal…so why is it that I am questioned about my sadness, my stress level that encompasses an chromosomal abnormality…I am told to be thankful…I am suppose to be positive…that I am not suppose to question “why me”…but society is thankful when the chromosomal abnormality does not happen in there life….of course we all want the ideal life and perfect children…good news is I still have a ideal life with great children…I am also happy to report that Maddie has 10 pudgy fingers…8 toes n 2 webbed toes so that equals 10…and she is relatively healthy…

in the eyes...

Two 6^th grade girls came to my home selling goodies for school…I was holding Maddie when I opened the door…they commented on how cute Maddie was…then one asked “is your baby Chinese” I was not offend and I thought it was kind of funny…I responded “no Maddie was born with Down Syndrome and one of the features is almond shaped eyes with a slight slant” one responded with a nice look and a smile… “so she is a special baby” I responded ‘I like to think so” …a couple minutes later a little boy came popping in from my childcare and started saying hi to the girls…the one girl asked “is he a special child” I responded “no he is Japanese!” I liked this conversation…and I liked it because it is how everyone should respond to the term Down Syndrome…it is not an ugly term or a I am sorry term…it is a term that should be special because there are so few babies like ours…it also made me think that if inclusion is working…I think it is working…I think this because when a child or a teen asks about Maddie…it never has a  negative after tone it is simply not a big deal…my generation it is a big deal…Maddie was the first person with Down Syndrome I met or touched…maybe just maybe our babies will stop being terminated and start being accepted…92% are terminated and 1 n 733 have a little extra…  

Selfish Grieving...

I never in my wildest dreams ever thought I would have to defend my feelings for my own daughter…I never thought that after I may say or write something like... I am confused, conflicted or even angry about Maddie being born with Down Syndrome…that the very next sentence to follow has to be “I love her”…let me say that I can be angry that I did not get the daughter I always dreamed of…and still love the daughter I received whole heartily…my love for Maddie does not waiver because she was born with special needs…I did grieve for the loss of the daughter I thought I was going to have…I grieved at the notion that our life would be easy and be without so much worry…I grieved for my naïve outlook on life and heartbreak…I grieved for the loss of one child…and danced for the life of the other…but I am always taken back when people mistake my heartache for me not loving my daughter…

not my Maddie...

There are a few things that Maddie has figured out! she knows when she is hungry to go and scream at me to feed her under her monkey high chair…she knows that EVERYTHING must go in the toilet…she knows if she screams enough Max will come get her…she knows that the computer keyboard is for pounding…the phone is for talking…the clicker for changing the TV channels…and the refrigerator is for climbing…and last but not least to get out of trouble just flash a sweet smile and giggle and it gets mommy every time!...I have been having to discipline Maddie...she is naughty and she does know better then to hit an cry just to cry…she knows that all she needs to do is ask in her cute Maddie way and I will give her the world… it is hard to discipline her….I am conflicted that I may hurt her ego…that I may hurt her development…that I am OVER sensitive because I do not want “my stereotypes” to hurt her…that she will not understand personal space or have to be the center of attention…all things I know to worry about another day…but when does that day come…and when is that day to late?

coming along...

On Saturday we attended a birthday party for one of Maximus's classmates…I was nervous to go…I was on a “Hi” basis with some of the moms…but not a first name basis…also I had to take Maddie with us…because Chad was hunting…I was nervous about the other mothers staring and or making comments…so we walked in and Max was off and joined in the festivities…me and Maddie sat at the table where a nice faced mom was sitting…we chit chatted and other mothers joined in…and we talked about where we were  sending our kiddos for kindergarten…then she said I am sure Maddie can join Max at “that” school…maybe you can use Maddie as a way in for Max! I then knew she knew Maddie was born with Down Syndrome…it is silly that I cannot just go with it…that I think I have to declare something…I did not declare anything…but I yelled it in my head a few times…anyway…we got to talking and she told me about her daughter that was in the NICU and then PICU for months and still has severe kidney issues…and has to travel and see specialists in Denver like we do…it was nice to relate to someone face to face…it was nice to have them understand the pure horror I feel giving my child to someone else to take care of…she just got it! I never did say the words ‘Down Syndrome” I am SOOO trying not to define Maddie as just that….I know she is more…this weekend we celebrated another milestone…Maddie took the phone and said “ha” with her hand lifting the phone to her ear! We are coming along me and Maddie!

why do we wear seatbelts?

Make an on-line slide show at www.OneTrueMedia.com

Butterflies n Maddie...



Max luvs "tran-chillas"! Maddie not so much...




Maddie and Mommie...Maddie is GRUMPY!



REALLY Grumpy! Maddie is not a fan of spider webs!

Pretty...

look I am a butterfy!

Pumpkin PoWER...

messy Maddie



to much ice cream! time for a bath ;)



oOPs! I fell in brothers ice cream!



darn reflux...

"you are the mom...you call the shots"..."you are your child’s best advocate”…these statements do not ring true in this house…Maddie also has a dad and he also knows a thing or two…and then Maddie has her doctors…this is a hard post to write...I have rewritten it in my head a few times to say the least…on Friday we met with Maddie’s doctor…my mission was to take her off the Reglan…mission was not accomplished and will not be for awhile…Cha tells me we hired experts to tell us and help us care for our daughter…not to take there advice of those experts would be detrimental to Maddie’s health…the doctor simply said if we take Maddie off this medication…Maddie will have to have surgery again because of damage the acid reflux will cause her esophagus…at birth Maddie was put on Ranitidine to help with “possible” acid reflux and to protect the repair of her TEF/EA…the swallow study confirmed Maddie has “severe” acid reflux…when we saw her stomach not empting and her esophagus not contracting the Reglan was introduced…the risk of her not being on this medication far outweighs the possible side effects…the doctor came ready to have me understand that there are very few options for us…and she reminded me of fear mongering that happens with medications that are in litigation…I got the point and Maddie will remain on the medication until further notice…I came away reminded that being Maddie’s mom is different then being Max’s mom…that I am supported when it comes to Max…I am the expert…when it comes to Maddie…I am not…I am the one that gives her love and support…but I am not the one that makes the decisions…I am the one that follows through on the decisions that are made…

 

Daisy Bandits...

just say no...

Why do I get so upset and nervous about doctors? Friday is Maddie’s checkup with her doctors…and I have been doing A LOT of lobbing to get Maddie off her most recent addition of medications…so I have my speech ready…and I have a power outfit…and I feel like I am presenting to my boss for a raise! But it is a doctor…a person that should be listening to me…not the other way around…I should not be upset about this…I should just be able to take Maddie off this medication…because I feel the risks out way the benefits…but really this is NOT the way it works…I am not the only advocate for my Maddie…that is what is different about raising my Maddie…everything and anything we do …is a group decision…with doctors, therapists and social workers…and believe me I am SO thankful to have the team I have for my girl…but this time I just want to say no…no to the Reglan…the research and studies I have read have say the longer a child is on it…more likely the side effects will occur…this medication is for short term usage…but that is not he impression I am getting from Maddie’s doctor…so I have been talking with Chad and he wants to keep my feelings out and only good hard data in! He is the scholar in the family! I just want to be honest…I cannot handle another diagnosis of this magnitude…these are the side effects and this medication that has a black box warning…Serious neurologic Reglan drug side effects in children include:
• Tardive dystonia
• cervical dystonia (torticollis)
• Parkinsonian symptoms
• Akathisia
• neuroleptic malignant syndrome
• tardive dyskinesia
So again would you give this to your child?…Maddie is still taking about an hour to eat and is still only eating between 2 to 3 containers of Gerber puree baby food…she intensely dislikes any cereal with her food…so this is where we are at…scared to say to much to the doctor...I do not want another swallow study….and REALLY do not want a higher dosage of this medication…so lets face it … Maddie is not starving…she does not have teeth…they kind of go with the whole eating food thing…I think!

it is a crawl...

Maddie has been frustrating me lately…she REFUSES to do a lot of things...she is very strong willed…and did I mention she yells at me for everything I do wrong! Yeah she does…anyway…she had been refusing to 4 point crawl…so I just stopped working with her on it…stopped…and then I knew the OT could tell I was not working very hard with her...then I felt bad...because of my frustration Maddie is the one who suffers and I do not think it is ok for the OT to do all the work…I know it is my job…therapy just becomes a lot sometimes…it is not the therapy it is the point Maddie just does not do things…everything has to be discussed and practiced…and practiced for months…then maybe if she feels like she will do it…so back to the 4 point crawling…last week she was rolling on her back, standing up, and sucking her thumb… I  knew then I needed to push her...so this week…it was a family thing Max, Chad and I worked with Maddie it took all three of us together…but she did it she did one 4 point crawl…it was so awesome…so today when her OT came she did it for her…it was great to see our hard work pay off…now I just need to get her to do it more consistent and for longer periods of time...she is just so stink’n fast army crawling…Maddie is very much her mothers daughter…we only do things when we say it is time...

just say NO to pity!

Empathy is one of my favorite emotions…it is one emotion that I did not always have…I remember the day I got it…felt it, and put it into motion…it was the day I start working with disadvantage youth…it was the day I realized the world was not a rosy place…like the one I had envisioned…the one I grew up with…I worked with kiddos at a Boys & Girls Club for over 10 years…they taught me that life is not fair…so when I went through the diagnosis of Maddie…I think I had empathy mastered…and when I searched for it in other people… I felt it was hard to find…the synonym for empathy…is pity…I got the “I am sorry”…”well you know that person down the road has a child that died”…that is not empathy folks…so during Down Syndrome awareness month…it is a good time to think…do I have empathy? Or do I have the case of there is always someone worse off then you are…cause that really does not make anyone feel better…and really I am happy with Maddie…I like her extra chromosome and I am not really struggling with Down Syndrome…like I used to…I am over it…she is my daughter…if you do not like her enhancement or it frightens you…ok…face it and start asking questions so we can fix your false stereotypes…or just really stop and look at Maddie…she is the sweetest thing you will ever see…and she does not bite… yet!

more alike...

Over the past few months...Maddie has become a BIG Girl...she is a toddler! she may be small in stature....but she makes up for it in personality...she loves to help her brother do anything...puzzles are her favorite...she loves to watch barney and eat baby cheetos! I know healthy! but it is good self feeding...her love for reading matches Max at this age...Maddie is more like Max was at this age then not! REMEMBER...more alike...

this is therapy! self feeding and drinking...

I am the Sh@*ZZZ!

Look at my work!

Mommy does not want me to hunt!

Hikes Rock!

start of the trail

we call this the butt tree this Chads but and Max is smelling it!

Maddie is still happy!

Getting bored!!

everybody pees!

wait up! Max is STILL talking...

I am so cute!

wait up! buttercup!

love the fall...

hiking is hard work!

we have been hiking...ALOT...Max and Maddie love it...it is GREAT family time...today Max and I chased each other down the mountain...and had fun hiding from Chad and Maddie...it is called the Bridle trail on Casper Mountain...it is a 4.5 mile hike...it has water falls, wildlife and great rock formations...Max does the whole hike by himself...he is a RoCKStar...and Maddie sings, talks and eats...soon it will snow...and we will have to figure out another way to spend our weekends...