Thursday, December 30, 2010

Santa Baby...

video

Wednesday, December 29, 2010

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

Thursday, December 23, 2010

Gingerbread FuNNzzOo!

look what we are doing...

this looks yummy...

ok I'll stop touching..

 ok maybe not...

Tuesday, December 21, 2010

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?

Monday, December 20, 2010

SaNta FuN!!

Sunday, December 19, 2010

Saturday, December 18, 2010

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!!

Wednesday, December 15, 2010

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…

Tuesday, December 14, 2010

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?


Monday, December 13, 2010

Mondays...

MoNdAy AlrEAdy!

Wednesday, December 8, 2010

maddie's first luv...

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




Tuesday, December 7, 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…

Monday, December 6, 2010

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…

Friday, December 3, 2010

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….

Thursday, December 2, 2010

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….