know when to shut up!

Meeting a person that was pregnant…yesterday was interesting…she said she was delivering at a hospital that I knew meant she was having a high risk baby…then when I looked at her and her husband I knew something was terribly wrong…her eyes were teary and her husbands to…they just looked lost and sad…I then commented to her that I delivered at that hospital…that they have the best doctors…and that they fixed my baby…I asked what doctor they saw and it turned out to be the same doctor that performed my amino synthesis…also the doctor that gave me the results of T21…I did not tell them that part at that time…then somehow she said that her baby would have to have heart surgery upon delivery…I said my little girl will have heart surgery with a scope when she is 3 years old…they looked puzzled and then I said my baby was born with Down Syndrome…she said hers was not…I actually said… ooh good…I did not like that response…but I will get better with it as time goes on…but it was interesting the others in the room…the looks on the face and disbursement of women made me understand that this was an uncomfortable conversation for a baby shower…I needed to stop talking to the women…and I should have…I knew better then to engage this pregnant women in to a conversation I would have hated while I was pregnant…I would have been so mad at the women telling me her story(I did not tell her everything!)…when her story is so much more important to her…I knew it…and I knew it better…so there it is me thinking about my reaction to the woman who had an amino and that came back negative…I feel guilty about my feelings towards my Maddox…I feel guilty that I have struggled so much with diagnosis…I am mad that I get annoyed with her when she spits food at me…when she coughs and gets milk everywhere…I am sad that I am still waking up hoping that today will be the day that everything will be ok…I am not religious and I do not think that she is a blessing…I think she is my daughter I created with my husband…and that is that…I feel guilty that I just cannot dress her up and take cute pictures of her and think everything is ok…I do think she is the cutest little baby…but I just cannot get over that she will not stay this baby…that she is a person…not just a baby…and nothing changes…as a side note…Maddie just woke up from her nap with her hair everywhere…with a HUGE smile…and is saying to mommy…really you would change me? NO…

voices in my head...

While talking with a couple of women last night and discussing our babies…I kept wanting to say to them….but my child was born with down syndrome! why did I want them to know this…it was funny because over and over in my head I kept yelling it at them…with everything we discussed from teeth to thrush to height, weight, and eating habits…I just kept yelling it at them…it was funny…to me…but it poses the question why did I do this…why did I think that it was so important…I did want to single my Maddie out…and not just let her fit in with the other babies…why am I making it a stigma for her and not just letting her be Maddie…these babies are potential friends for her and I wanted them to recognize that my Maddie was enhanced…enjoying the conversations in my head I also kept wondering what they were thinking…if they were saying not nice things in there heads about me or Maddie…I had my security blanket there…Chad….and that always makes me more comfortable…but I hate that I used to say things like… “oooh that is so sad” or “I am glad it is not me …this is where I lack confidence in the world of parenting a special needs child…at times I am still embarrassed and want to keep it a secret…that my baby is enhanced and not like most babies…I am sure with time this will change but still being a newbie this is the feeling that over comes me…I am very comfortable with people that know me and my family…but people I used to know or future people I will meet…I often wonder what they think…I can here people saying “ooh Kim” your just being sensitive…I am wondering if this is my enhanced “normal”…

Maximus...

I am not afraid of birds mommy…because I can poop in the potty…
Chad said “smell my fart”…Max “no thanks I have my own ice cream”…
My room is now open for business…
Do you have an itch? “no it is just a water strider”…
Mommy a hermit crab is coming out my butt…
STOP following me CRAB! as he swats air behind him…
Are they going to put Maddie back in your belly mommy?
I can’t take a nap mommy…I have to work!
Mommy do you see that polar bear over there! driving past Glenrock WY
I love my starbucks chocolate milk!
This really sums up my day with Max…

Update...

the principal where Max will be attending is a RoCKsTaR…she pulled the teacher aside and asked if she had done the “gesture” she said yes with out even blinking an eye…she said that she does it sometimes to the assistant in her room…so the principal asked why…she replied when we do dumb things…the principal said is that what that means? She said well you know…she said no I do not know…and handed her the email I sent her describing my feelings…the teacher began to cry and said her nephew was born with Down Syndrome…that she had never thought of this that way…the principal asked if she would have done this in front of him…she said she did not know if she had…she then began to cry again and wants to sit down and apologize to me and Chad…really she needs to say sorry to Maddie…but that will be in my conversation with her…the principal made GREAT points with her and really used it as a teachable moment…kudos to her…today my little 4 year old daycare girl said that her teacher said sorry to the whole class for the "gesture" and did not mean to hurt people with Down Syndrome…it is a start a good start...now the school needs to take the pledge and help stomp out the “r” word and gesture! We are sitting down with the teacher this week…we are looking forward to it…and so it begins…our fight for our little girl and others that need a voice…uncomfortable, scary and sad…but on the other hand...rewarding, powerful and the right (only)thing to do…

a gesture :(

I am not sure how to start…I am confused, stomach in knots…and just plain pissed…yesterday one of my daycare kids told me about her teacher making the limp wrist hand gesture against her chest at school to her and her friend…HER TEACHER…the same teacher that Max will have next year…so now do I not send him…do I talk with the teacher…I emailed the principal…so I guess that is were I have started…I am sick…this is the reality that I hate…that is so hard for me…that a person makes a gesture and it is a huge slap in the face…how can people use the “r” word or make a gesture at leisure like it is nothing…it is my little girl…my baby…and it is SOOOO personal…I guess logically I get both sides of the argument…should we sensor language…I do not have that answer…but I do know that the “r” word or gesture physically draws a reaction from me…I get sick with a nervous stomach…I did not realize how this was going to be…no one could ever prepared me for this…I have read others peoples incidents with this…and I always wondered how I would react…I thought I was better prepared for this….I was terribly wrong…I get that this is members only club…but how can you look at my pig tailed little girl and think that this language and hate is ok or funny…last month she was officially diagnosed as “m.r”…did this change my reaction today…maybe…before for some reason...she was born with Down Syndrome…not “m.r”…I know the hard reality of Down Syndrome…I just like to think that we have made HUGE strides and that she will be ok just enhanced! the tears keep coming…and stomach will not untie…it is to soon for Max to fight this battle…and it is to soon for me to have the conversation with him…he thinks Maddie is just perfect...and she is…just hard when you are the mommy…and you have to explain that you cannot fix everything…I get that Max does not know about what transpired…but I am forever the mommy and thinking what and how should I handle this best for my kiddos to be the best example…and I have not a clue…

Cutest little lady...

awaiting the results from the amino synthesis…I began to morn all the things I thought I would never do with my only daughter…this was so hard and heart wrenching for me…I cannot explain the sadness and hurt I felt….at this point I was only reading the clinical side of downs syndrome not the “reality” of down syndrome…I am beginning to see that my life with Maddie is just like the life of other mothers of girls…we can and probably will enjoy the same things…again I think it hurt me so much because I was so looking forward to being a mother of a little girl…because I missed out on so much with my mother…I wanted to live through her…wrong or not that is what I always yearned for…the list of things I was wrong about…this is with the ILLUISON that Maddie will let her mother(me) live through her and like the same things I do…funny how I assume she will be a little me…that she could not possibly think for herself and like things on her own :) I cannot wait to introduce her to musicals (stage and movies)…I love….love…and I love singing and dancing….I love Grease 2 not Grease and I love Flashdance, Footloose, and Mama Mia….I cannot wait to show her magazines…I love to read them and look at all the beautiful people…I love to shop and I love shoes and purses…I love to talk about gossip and engage in gossip…I love weddings and pretty nails and toes…I love hair and going to the beauty shop…I am anxious to get back to me…I need to find that me…and I am slowly crawling my way back…I know I have changed and because of finances and stress I will probably never get back to the lifestyle I am accustomed to…I remember thinking if I ever have a daughter I will be cautious of what I say and do…so she never feels overweight or ugly…I remember saying I will never ask chad how I look in front of her…I want my daughter to think and know she is ALWAYS beautiful….I look back at the shallowness of thinking she could only be pretty not smart! know I want my Maddie to be smart…and screw the looks…I will forever think she is the cutest lady on earth!

365 days ago...

365 days ago I was lying on a table and my world turned upside down…I remember it like it was yesterday…I told Chad to have a great day at work and I would call him after the ultra sound…I kissed my rock goodbye for the day…I went to my appointment to see the stomach bubble…nothing crazy…I thought the baby just peed the last time or that Max was who we were all paying attention to and just missed it…I laid there and my favorite doctor came in and we were laughing about Max telling her that he had bobbies, daddy had boobies and mommy has BIG boobies…then she started to go from the heart to the belly to the brain…to the heart…then she stopped talking to me and started talking to herself…language that was foreign to me… that was scary…she would repeat…tef…ea…down syndrome…heart…over and over…and all I could do was cry and panic…and I knew…my baby was hurt…and I could not fix it…and no one else could either…she then said without looking at me…you need to go to Denver…she looked at me and said she could not find the stomach bubble…I said to her you said Down Syndrome…she looked at me surprised that I picked up on that…she said she did not think that the baby had Down Syndrome…that my chances were low…that she did not see any other markers for Downs…I knew then that my baby had Down Syndrome…I just knew…I walked out of the room and her nurse hugged me…she hugged me…and the staff behind the counter did not ask for payment…just said good luck we are thinking of you…I called Chad…I could not get to the internet fast enough…and then I saw what was possibly wrong with my baby…her esophagus not attached to the stomach and a blockage between her esophagus and her trachea …how would they fix her? will she live? does she have a butt hole? and her heart what will they find with her heart…all questions 365 days ago that would not be answered until she was born…the only thing that was for sure is that my baby was a girl and she was carrying an extra chromosome…today I am glad this day is almost over…I think it is a milestone…a day that will just come an go next year…I am beginning to celebrate my little girl…and I like her extra chromosome…she has something not everyone does!

Habits...

I remember with Max always thinking I was going to make something a habit…if I did it once! like rock him to sleep which became a habit and I hated it but now I miss it…you know I had laundry to do or pay bills  with Maddie I am not sure why but I let things slide more…even though when I found out she was going to be born with Down Syndrome…I thought we would not be able to sleep in the same bed…because I thought I would never break her of the habit…but of course she sleeps with me and I love it…I am sure she will be excited to be in her own room and her beautiful bed someday…but today she is my little princess and I know she is my last baby…so last night she was having a tough time breathing and a hard time with sleep in general…she threw up and was stuffy…just bad news all around…so I held her, cuddled her and petted her hairs and within seconds she was asleep…and she was so peaceful…I thought to myself then…oh no is this going to become a habit! then I realized if she becomes sick…which most likely she will I will hold her whenever…even if she is 30 years old…and I will cuddle her and I will pet her hairs….if that is what she needs…she will forever be the baby I hold in my arms…then I thought of who comforts me and Chad still holds me tight and pets my hair…when we received Maddie’s diagnosis…I curled up in my dads arms and he held me tight…the parents touch…how it cannot be replaced…I still yearn for my mom to brush the hair out of my eyes…

Little Girlz...Lily

I remember sitting in the doctors office on one of my many visits…and wanting to announce that none of the people in that room needed to get tested for having a baby with Down Syndrome…I wanted to shout I am the 1 in 875…and I was pissed…and sad…and scared…I remember listening to the conversations around me and thinking about how stupid they sounded…and naive…and selfish…that they were annoyed that they were over due…that they were uncomfortable…uncomfortable…uncomfortable is being and carrying 39 weeks of fluid around for 5 months and being drained of fluid every month…that is uncomfortable…I remember watching the young couples all on there cell phones and thinking they have not a clue…what a judgmental person I am….then today I met Lily…a girl (Grace) around 12 years old approached Chad and asked…does she have Down Syndrome? I could not believe it…someone noticed…I did not think Maddie looked Ds today! and to be noticed by a child…wow! Chad responded yes! She said my sister(Lily) has Down Syndrome…I saw Lily earlier that day playing with the other children…I wanted to follow her and watch her closely but I just observed her from a far...and took it all in…then I heard the big girl ask if she could hold Maddie…Chad said yes…I could not believe it I am A LOT over protective…so I went into where they were at…and there she was a little girl that was 6 years old with Down Syndrome …I was nervous and did not know what to do…should I talk to her…should I grab my baby from this strange little girl…I was very confused and was going to panic…and then…lily said to Chad will you tie my shoe? and then she looked at me and grabbed my hand…I could not believe it…I was touching a little girl with Down Syndrome…and she is nice…and sweet and I wanted to cry…I know this sounds crazy…but I have never talked with…let alone touched another person with Down Syndrome…she did not bite me and I did not crack…she simply grabbed my hand and told me where to stand so the light could capture my shadow…and then it was done…she sat on a stool and said to me…sit here and pointed to her lap…I said I am to big to sit on you! She just smiled…the next thing I knew she was playing with Max in the playhouse and I was talking with her dad…and he just asked how are you adjusting? It was nice to be able to respond truthfully and without judgment…tonight I will go to sleep…ok and change forever by a little girl named Lily…

Annoyed...

do you ever just get annoyed? I am…I am annoyed at every little thing...the phone ringing…the mail…doctors…insurance…yesterday I got a call from the nice heart doctor...to tell me that my insurance is not covering something and that this was a courtesy call to set up a payment plan…I am not mad at them like I am the insurance company…but still…just annoyed…annoyed at my 4 year old screaming…and shrieking when he does not get his way…annoyed that dishes do not get done and neither does the laundry…annoyed that baby bottles never seem to clean themselves or are not magically made…and how about eating time whether it is breakfast, lunch, dinner…or snack time…I seem to never make the right thing to satisfy others…annoyed that my bathroom can not get re-done…and when going potty it is just annoying and ugly…annoyed at the weather…where is the sun...I need it...I want it…I will now perform a sunshine dance…

me a parent!

to be a parent…I am not sure if I ever really thought about it…before my 30s…then something happened and I new I wanted to be a mom…I had great parents…of course there were things I would change…but not much…I always knew I was loved…I always knew I was special…and I really did not think much more about life…then life happened my mom passed…my dad and brother did the best they could raising me…and know I am a parent…I am not sure how I am doing…I am sure I will not know until later in life…I watch Chad and how he interacts with the kids and it is amazing…I love to see how Max emulates Chad’s every move…today he was sitting on the couch just like Chad…it made me smile…I often wonder if Maddie will try to be like me…that is a scary thought…and such a HUGE responsibility…I know I need to react to unsavory things with grace…for her…so she does not let the bad get to her to much...being a parent of a special needs child has not yet set in…I was watching a show on the discovery channel about this subject and I still could not relate…I do not see Maddox as different…I keep on thinking it will happen…I think I will see her delays…when her OT comes…she assures me that Maddie is right on where she would be if she was “normal”…I guess this life is becoming my “normal”…doctors do not scare me anymore…neither does diagnosis…in a year I have learned to accept the unexpected…