did you know?

Did you know that I cry when I see Maddie…not because she has an extra chromosome…but because that is how much I love her…I love her so much that I get a nervous stomach and I tear up…I do this because I cannot fix her hurts…I can not take away the forever medications or the future surgeries…I cry because in my eyes she epitomizes perfection…true perfection…this is Down Syndrome awareness month…and did you know that if you ever a child like mine...it will be ok…and that you will learn to love that child more then anything…did you know that you will find strength when you thought you did not…did you know that you will rise up and be a strong voice…and a voice that will be taken seriously…did you know that you will fight harder then you knew you could or ever wanted to…all things I have learned in 17 months of being Maddie’s mom…I cry because I love her…I just love her…

a day in the life of Maddie...

Me an Max making a cardboard fort!

Enjoying some ice cream after our HARD work!

I like to chase trains! and eat them...

All this playing has made me sleepy!

words hurt...

that person is so “r” word…I was just being “r” word…it is just “r” word…these are examples of conversations I have heard in the past…then when called on the word…”you know what I meant”…”I did not mean it in that way or to hurt Maddie”…”you know I have always said it”…honestly no I do not know what you meant…I do not understand why you continue to use it…and I am not happy that you continue to slip up and use it…I am not a fan of the “r” word…and honestly I do not care of the whole free speech argument…I think the word is hurtful and makes the person using it sound ignorant…my daughter is medically diagnosed and referred by the medical community as Mentally Retarded…I believe congress just passed that it will now be known as intellectually disabled…this is a great step…but it is up to society to just do better…whether it is labeling Black or Hispanic people, gays and lesbians, or people with intellectual disabilities…it is ok to be kind…a student asked Chad the other day in class “how does people with Down Syndrome  think differently then me?”…he responded they don’t…listen closely…Maddie will get it…she will know what is going on and that she was born with Down Syndrome…she will know about the “r” word and she will know that word hurts…she will come home crying and I will have to build her back up…please understand that people with Down Syndrome do know and are present in everyday life…they know they were born with a little extra…they know that they are a unique class of people…so do not assume that people with Down Syndrome are always happy, easy going, and have innocent minds…they are human and they have thoughts, feelings, and emotions…they are vocal and mindful of others…my Maddie just wants to grow up as “normal” as everyone else…so lets include instead of exclude…and keep the “r’ word out of our vocabulary…or you may just have to explain why you can’t to Maddie…when she asks you why?

a different road...

October is Down Syndrome awareness month...so I have been tossing the 31 for 21 campaign…I love the idea of everyday bringing awareness to my cause…I have to admit I am not a fan of sharing the month with other causes…I think it is hard to get the word out when there is so much to celebrate and campaign for…I have been thinking a lot about my reactions after Maddie’s diagnosis…the one that has been really clogging my mind is whether to terminate my pregnancy…I was not happy on how I was told…it was over the phone at approx 2:15 pm in the afternoon…I remember hearing the phone at 12:00 pm and thinking the Doctor was not to call until after 4:00 pm and Chad should be home by then…in my heart I knew the diagnosis…I new she was a girl and she was going to be born with Down Syndrome…I got up from my nap and saw the answering machine blinking…I hesitated playing the message…I knew when it was the Doctor not the nurse what the diagnosis was…I left a message and he called back immediately…his words…your amino came back positive for trisomy 21…it is confirmed it is a girl…I can patch you to the secretary to set up a time to terminate your pregnancy…I was speechless…I was devastated and he put the thought of killing my baby in my head…and there was no getting it out…it took me about a week or two to come to the decision that I would go through with having Maddie…after 17 months of being Maddie’s mom…I think that prenatal testing is absurd…I have a hard time believing there is a test to eliminate my daughter…92% of women do terminate there baby with a positive test…I do not judge them…I just know that it was not the road for me…when I look at Maddie she smiles and laughs…she is a human and she has a brain that is VERY functional…I love reading other blogs and learning with parents of children with Ds…when I was talking with Maddie this morning…I wondered what do our blog friends sound like? Do they giggle like Maddie? Do they talk and make the same noises as Maddie…her sounds are unique to me I have never heard a baby talk like she does…or shake like she does with excitement…all things I would have never known if I had made another choice…

eat-choke-swallow...

Eating…it should be a fairly easy thing to accomplish...it should be something that comes natural…I have never seen the issues that I am seeing with Maddie…I have seen kids that wouldn’t eat because of texture, taste, smell, sight, defiance, and simply put they are just to busy to eat because they are so busy discovering the world…I get all of these issues...Maddie choked again and got a 2 cm piece foam lodged in her esophagus…I knew something was in there...but I was not sure what and I knew what I had been feeding her…pureed baby food STILL! In the past week Maddie has digressed her eating back to baby puree foods and will not eat everything she was eating last week…on Sunday Maddie began wheezing and coughing…and just seemed uncomfortable…so I mentioned something to Chad and he poo pooed me…and we went and picked plums…she was still acting funny and she went down for a 3 hour nap…I woke her up and tired to feed her and give her something to drink…NOTHING…she would get some food and drink in and then she would wheeze and cough…so I said to Chad should we go to the ER or what…he just put his pinky down her throat and up came the foam…since then…not eating…barely drinking...Chad thinks she irritated it…YOU THINK!! So today at breakfast it took an hour and half to get her to eat 3 small jars of baby food…and sum water and juice…at lunch a half of a small jar of pureed turkey…no Gerber Cheetoos she will not et them…no eggs…no nothing…frustration over the swallow study is that it helped nothing…just more medication that causes serious side effects…I know she has NO teeth to help chew...but we are working on chewing daily and she seems not to get the connection between chewing on a nuk or a rib and chewing on a baby ravioli or eggs…she is now coughing up everything…she ate ice cream for dinner last night…how long will this go on?

its fine...

Looking back at my ideals regarding parenting…is down right hilarious! I thought I knew everything…and thought it was not hard or tiring…for gosh sakes I did what my parents told me to do! Not really… but I have a short memory…and then I thought I had mastered parenting and then I had Maddie…I really thought I would never EVER let my child play in a indoor playground at the mall or McDonalds…I have and I do but I still try not to! Discipline in public…I have a 5 year old… enough said! Did I mention he is strong willed…I love the looks from newbie parents and older people that forget what a 5 year old is like…and they look at me like are you seriously going to let your child talk to you this way…and then they say…NEVER...yeah I was one of those people…and we will talk when your 5 year old does it to you! It is a stunning reaction that comes over me…when he yells or is disrespectful...first I have excuses and then I have the deer in the head light look…lately the “mommy look” has been working and the prompting before we go somewhere…but still parenting is hard enough without EVERYoNes opinion! I used to give my opinion on parenting to people…when I was new at it and when I did not have children…funny…I have stopped reading every parenting book…and I try to keep my parenting style to myself…unless solicited…parenting books are a waste of time…not one child is the same…not one child can be told what to do and when to do it…they are people with a brain let them have an opinion…this is the reason my son…is well difficult right now! but I realized that I was teaching him to comply…that is all good and well until he is 16 years old and a person wants him to engage in risky behavior…or when someone is trying to hurt him…”no” can be powerful…this is something I will foster in Maddie…the power of her opinion...even if I do not like that opinion…sleeping in a family bed was something I thought I would never do…but we did with Max…and it was great…then when Maddie came I slept with Maddie and Max slept with Chad...it was great and our kids are fine…and Max transitioned into sleeping on his own and Maddie sleeps on her own…they just wanted to and we listened…when I was pregnant with Max someone gave me a book on how to put your baby on a schedule…yeah this did not work for me…and Max put me on a schedule and Madde put me on a schedule … it worked out fine…the book should have highlighted routine…not schedule…but I am not the expert with a book deal…I really thought you could make a child eat…it turns out you cant…so currently I have Maddie not eating because she wants food she cannot chew or swallow…so I have to feed her with a mirror and she gets her own bowl and spoon…can you say HUGE mess…and Max only eats when you play the game “I bet you can’t eat that”…parenting is nothing of what I thought…but BETTER then I expected…

just Maddie...

Maddie hair needs a little help...

Maddie does RoCK her eXTRa Chromosome... (t-shirt)

Maddie's almost favorite past time...

my favorite thing is the bath...

my Health...

Normal…it is my favorite word and the one word I strive to be…granted it is only MY normal…not anyone else’s…so when I went to the doctors office and they said I had high blood pressure it pissed me off…me…NO not me…I am healthy and I do not want to take a pill for the rest of my life…it is to much of a commitment and I hate commitment…so anyway after a month of pouting…I went in for a second reading…sure enough it was high…then I was REALLY pissed…so I had to go see another doctor…no really another doctor…so I self medicated like anyone and ate a lot of M&M’s with pretzels in them…they were YUMMY! By the end of the BIG bag I no longer cared if I had high blood pressure and that I would do what it takes to be healthy for my babies…so I went to the next doctor…and NO high blood pressure…yep…NORMAL!! yes I am normal…seems I have a bit of anxiety when it comes to the doctor that told me my baby was not going to be born healthy…I knew I was a bit anxious and high strung…but had no idea that I was that traumatized by the diagnosis…as I was sitting with the general practitioner she said that everything looked great and that if I was having problems coping with Maddie’s diagnosis I should get therapy or even medication…I must have gave her a look…because she could see I was not open to this…not because I do not think I need it…I just cannot commit to a therapy session or a pill…

hungry?

Maddie is on a medication called Metroclopram  .which is a generic medication for Raglan… this medication is to help her esophagus contract and her stomach to empty…however, some of the side effects are worrisome…example confusion, abnormal thinking, fast irregular heart…muscle problems with the arms, legs, tongue, mouth puckering and chewing movements…then there is the suicidal thoughts, enlarged breasts, decreased energy, hallucinations, this one is my favorite increased risk of new or worsening mental or mood changes…then if we decide to take her of f the medication there is withdrawal symptoms including neuroleptic malignant syndrome…this seems like a promising drug to give my princess…I am sure every parent would like to partake in this drug…this is the drug I researched and asked 3 different doctors and 2 pharmacists there opinion…of course they all said the same thing the benefits out way the risk...I did however get Maddie’s surgeon/doctor to lower her dose of the medication…and I think it is working! My Maddie for the first time in her life is hungry…and wanting to eat and drink…this morning she ate BY HERSELF a frozen yogurt, eggs, cheerios, and baby ravioli’s…OOOH MYY! I cannot believe my little girl is growing up! She is climbing over everything and standing up to get into mischief! It is wonderful! At Yellowstone a man said to me how lucky I was to have a child that was not walking...I thought to myself you have no idea the party we are going to throw when Maddie takes her first steps…her millstones are everybody’s…and we will celebrate!

smiling feet...

Smiles…they are contagious and nice…it has been awhile since I have really smiled…this past weekend was a great time for me to just get to know Maddie better…there times I am not sure if I now her…sure I know what she likes to eat and her favorite tickle spots…but there is so much more to know…and kiddos are constantly changing…so sometimes it hard to get a good read on them…Maximus is very good at telling us what he wants, likes or does not like…and Maddie is good at smiling…and giving licks and kisses to tell us what she craves…she has begun raising her arms and saying OpaAAh…it is cute and it means she likes what ever it is you are doing…I think we all think our kids smiles are the BEsT and special just for us…Maddie is capable of smiling with her whole body…not just her mouth…but her eyes, shoulders, hands, legs and her feet…yes her feet smiles point straight up and back very flexed and they shake with excitement… I love that intensity…she also can smile with her bounce…she has this bounce she does when you are holding her and she moves up and down and with the best lick and shake of the head…she is filled with a smile…today I caught Maddie with a microphone that was singing high school musical…she was shaking her hair and getting down with the music…swaying back and forth and just loving it…when she saw me she giggled…and I smiled…

where's Max

Yeah! girls weekend…a weekend just for me and my Maddie…so far it has been wonderful…this morning we walked and help raise money for a great cause…got a huge Starbucks and just loved on one another…when she wakes up from nap we will go to the mall and enjoy some time shopping and browsing…we are going to pick out some new finger nail polish so Maddie can have her toes and nails done…Chad and Max are having a boys weekend hunting and fishing…I am hoping to make this a annual date for me and my girl! Funny thing about my Maddie is that she is yelling and searching for her brother! And she is baffled at where he could be…she schreechs out her maa maa maa with her hand and arm in the air waiting for him to come running to serve her! When she realizes he is not coming….She starts searching for him from room to room with no luck…then she sits at the front door waiting for playmate to come home...