Wednesday, March 31, 2010
we are very excited for Easter…a friend does a GREAT egg hunt…and I am in the hunt for a CuTE hat for Maddie…this week has been weird for me…it is like I am falling in love with her all over again…and I am really relishing it…this morning I steady through a tough moment…of wanting to make everything better…with this strong emotion I feel for her…I feel I need to protect her from the ugly-s of the world…she is approaching her one year birthday…I still cannot believe I have a child with Down Syndrome…but I can believe I have a daughter…she is so interesting right now…she is so curious and naughty…if she sees Max is reading a book she has read it with him! the other day Chad and Max were building dominos….she wiggle right down to the floor, rolled to where they were…and timber! it made me smile to see the smirk after she was done…I think Max has a long road ahead of him!
Friday, March 26, 2010
Really look at Maddie…a friend pointed this out…I am not sure that I do really look at her…I know I did not when she was born…I know that I was scared and I did not want to love her and get attached to her…I was afraid that she was going to die…I was afraid to be her mom…when Maddie was about 3 or 4 months I finally dissected her body…I remember doing this when Max was just hours old…but with Maddie this was an emotional toll I was not ready for…when I began…I remember noticing her round head with 2 soft spots...her hair was fine, long and unruly…her features were porcelain doll like…her back had that thick patch…and her scars were mending nicely…her hands are chubby and her butt was squishy…and Maddie has thigh-cles! Then I got to her feet! She has web toes…I could not believe it…I could not believe it took so long to find…seriously just weeks ago I found that she has a turned middle toe…so this question or suggestion to really look at Maddie…scares me…I remember the day I fell in love with her…I remember the time that I knew I did not want to live with out her…but to REALLY LOOK at Maddie…makes me feel vulnerable…very inadequate…so last night…I laid right over Maddie and let myself really look at her and try to see her…this is what came to me…lovely, magic, naughty, cute, funny, stubborn, perfect features, her eyes are so blue with wisps of white…looking like a beautiful royal blue hand chief…her hair is great and spunky…her hands are chunky and she is so tactile…her belly is perfect for raspberries and her butt is still squeezable…and this morning Maddie will wake up and this is my favorite time with her…she is so happy to be alive…so cuddly...and she loves to greet her brother with hugs and kisses…she is also ravishing hungry and she squints her face because of the light and she is always so cute…so to really look at Maddie makes me take off my reserves a shield I have put up…to protect myself…by doing this it does allow me to see her beauty…and to see that she is JUST a little girl…trying to find her way through her life… and I am the spectator here to cheer her on…
Wednesday, March 24, 2010
I would like to back up… to a time when I thought people should just get over it…over anything and everything…I just could not be bothered with what I thought was “weak” people…but now I am one of those people that just cannot get over it…and I am not sure I am ready to get over it…”it” is Down Syndrome…I realize I have lost friendships…I have alienated family members…because my coping skills for this diagnosis…these skills are frankly not there…today I had a person say you look sooo tired…tired I said…yeah I just did not put on makeup…she said no tired and with her hands gestured a long face…I simply stated that Chad was gone for a few days and I was just gearing up for the long days ahead…but really I am tired of “it”…then within minutes another person asked the how are you doing? question…I am not a fan of this question…I realize this person wanted the “its great” answer! but really I am not ok…I am here in a shell…I have good days and happy days…but then I seem to come back to this…”it” has taken its toll on me…should I be over “it”…maybe but I have only had 365+ days to come to this…I have only had a short amount of time to process everything…when your child is born and in the NICU…you just want her to live and thrive…”it” was not important in the hospital…her esophagus and heart was…now that her health issues are there…but not a everyday issue…I have time to ponder the Down Syndrome…as people come in and out of my home with there “normal” children they want to say things like…look she is “normal”…or see she is like every other baby…yes I suppose she is…but I do not dwell on the perfect ness of her now…I dwell on the scariness of the future…I do not want her to get sick and have to stay in the hospital…I do not want her to get made fun of…I realize there child may be made fun of…but there child can lose weight or get another haircut…my child will be made fun of and have a stigma…because she is who she is...I just wish people with “normal” lives would realize that I once had that…and now I do not…and I will never again…because for my life I will have to worry about my child and health care…no exceptions…and never again will I have the fairy tale of my child growing up and making true friends, going to a dance with a boy, graduating on time, going to college, falling in and out of love, getting married, having sex, driving a car, sneaking out of the house, living on her own completely…because with her there will always be a plan and a lot of people helping out with that plan…so am I over “it” F*#$ NO! do I celebrate my Maddie…F#*@ YES! sorry about the f word ☺ it makes me smile!
Tuesday, March 23, 2010
When I heard my child was going to be born with Down Syndrome…I thought just maybe…she wont be…that it was a mistake…not that she is a mistake just the reality of Down Syndrome…then I thought maybe just maybe my baby will be ahead of the curve! She will be the smartest and fastest…both cognitively and motor skill wise…then I thought maybe just maybe she will not have the predominant features of Down Syndrome…she turned out to be the cutest thing since sliced cheese! and maybe just maybe she will not have the health issues that comes with Down Syndrome…lets face it…I am bummed that we are starting to see delays…I just thought that if I worked really hard that this would not happen…I thought that if I read all about it…and made sure I knew everything and I got the best people to work with her…that she would be “normal”…she is not…and I am frustrated…this is where I say she is “normal” for Maddie…
Sunday, March 21, 2010
I know this may not be a big thing to most…but I have been in hiding since the diagnosis of Maddie…what I am talking about is…I posted on Facebook…I do not post often…and I get all nervous and stuff…but today I thought I needed to do it…I needed to declare I have a child with Down Syndrome…and I am not ashamed…I am not embarrassed…that meiosis happened…I am going to celebrate that I am one of the few around the world that help create a child with Down Syndrome...last night watching some reality TV someone said…”most people live in other peoples lives” this hit me like a ton of bricks…this is me…and lets face it I need to stop it! I want to be in the presence of my family and my life…it is a great life with smiles, laughs, and fulfillment…Happy World Down Syndrome Day...
Saturday, March 20, 2010
monday is a big day! we are meeting with the state about Maddie…we will complete the ICAP test…SCARY! I am very nervous and excited…P our case worker is a fast worker! he said after this test is complete…with in a week we should know the results and if we will get on the list for the children’s waiver program…if we qualify ☺ it is very hard though to go through the test and realize there are some delays in her…things you just do not want to see…but she is still my girl…and she is super duper for Maddie!
Thursday, March 18, 2010
yesterday I met someone my NEW case worker for the Children’s waiver program…and I love him we will call him P!…P is really GoOD for me…and my negative view of Down Syndrome…I have always seen it has a hardship, an inconvenience, and just not positive…but he celebrates people with Down Syndrome and
disabilities…he even has a 14 year old son with Down Syndrome! P explained to me about Maddie’s potential future…that he can help guide us through…we talked about her starting school and our options…we talked about her living on her own if she wishes to do so…yesterday he gave me hope…and that is what I needed for yesterday! Maddie is doing can I say FaNTAsTic! She is laughing and smiling…and coughing for attention…and sitting up for LOOOONG periods of time…and eating! HuGE news she cut a tooth…it is very cute and the tooth is white! for some reason I thought it would be black or green…I am not sure why I thought that! Maddie is also leaning to find us and getting our attention…very funny suddenly she will go sideways as if to say…HERE I AM!
Tuesday, March 16, 2010
what to do?? so many things unknown…and I am not sure if I should change case workers…here is the deal in Wyoming we have what is called the waiver program…this is state funding that helps accommodate special needs people…we REALLY want to get on this program…but you have to be qualified…Maddie had to see a psychologist that labeled her MR…and now she has to be observed and picked apart by people from the state…then they get to decide if she is “needy” enough…I KNOW the payoff far out ways all the work and labeling…but I am not sure if this case worker is really working for Maddie…she is very soft spoken and does not call and let me know things...she does not call to see how we are doing or giving me updates…I like to know where we are in the process of getting Maddie qualified and how long the waiting list is…she allowed the psychologist to take 6 months to get his paper work in and he was the FIRST step in this process…so do I give her time…or do I jump ship…
Saturday, March 13, 2010
beauty pageants for children born with Down Syndrome…I can see Chad rolling his eyes! Ok ok I am bored on a Saturday…and all my babies are fast asleep…so while searching the web…I came across a not so nice person…she was featured on the TLC show toddlers and tiaras…she said that she thought her baby was born with Down Syndrome and was not cute enough for beauty pageants! REALLY my Maddie is the cutest little chick in the WORLD and I hate to admit this I was researching if there was a beauty pageant for her...I have always joked with Chad that I would so be a pageant mom…and I thought I could not do it…but now this lady makes me want to get Maddie in pageants just because she thinks her daughter is better then mine…I think I sound like I am still in high school…but it is a lazy Saturday and I was up all night with my little pageant princess! All I am saying is that there should be a forum for my little girl to strut her stuff! She just needs a scholarship for school to! Is that not what the pageant thing is about... not the looks…funny…but for the record my Maddie is Down right B-E-A-U-T-I-F-U-L here is the link to the sad mama… http://jezebel.com/5382821//gallery/gallery/1
Friday, March 12, 2010
so Maddie turned from bad to worse…she slowly declined throughout the night…her fever crept higher and higher…by 3:30 am she was in the bath tub and getting cooled down…she was at 102 and the bath brought it down a bit… for her to sleep until the morning…at 7 am her temp was at 104.2 degrees, throwing up and having loose poops…it was not good…taking her to the doctor earlier this week (Monday)…I knew there was a substitute for our regular pediatrician…she is not great…on Monday she offended me by asking me if I ever clean Maddie’s ears? I do but I never stick anything in them...our regular pediatrician told me to leave them alone…and I have…so today she cleaned them with a tool…that she could have used Monday if they were so bad! and found they were a little red…and that her tonsils were bright red with puss pockets on them…yesterday I took her to the same sub-doctor for her to check and see if Maddie’s mouth had thrush again…because there was an odor…she had stopped eating and her tongue was white…so trip number three to the doctor this week…we are hopefully on the mend…Maddie’s culture came back negative for strep…so they think it is tonsillitis and a slight ear infection…last night she was moaning and crying all night…and by 3pm today she is jumping in her jumper…I am hoping this is a great sign! Maddox is so strong and nice…she was smiles for the doctor even though she had a 103 fever…she smiled at her when she was sticking a thermometer up her bum bum , digging in her ear and sticking stix in her mouth…Maddie is just cool…she is my rockstar…the doctor really needs to work on her bedside manner…she turned to me and said you know this is typical for “Downs Kids”…I just responded lets just treat the symptoms not Maddie’s ENHANCEMENT!
Thursday, March 11, 2010
In the process of having a child born with Down Syndrome…I stopped getting standard medical procedures done for Maximus or myself…when I was pregnant with Maddie and after she was born there was so many tests and results…that I could not handle…I simply can not deal with something wrong with Max… so at his last visit to the doctor I chose not to do the standard blood and urine test…the doctors office called me to remind me several times and when I took Maddie in on Monday they reminded me again…I even said to the nurse…I am not a bad mom that only thinks of Maddie…I just have a hard time making Max do things he is not comfortable with…so today we took him in for his test…I wonder when I will stop being so jaded…so afraid of everything…I try to protect Max from the fact that the day we had Maddie…his role as a big brother changed…that he will now have to help fight for her and advocate for her…he will have to have thick skin and be patient…the thing about Max is that he would have been this big brother regardless…he is cool and proud and very in love with his little sister! Maddie is not feeling very well right now and I am not sure what is wrong…she is not eating solids…and only taking small amounts from the bottle…she has a very low grade fever and wants to sleep…her mucus is still clear and not green! I took her back to the doctor today and they say it could be a virus, cold, or teeth! They want me to just watch her…it is hard to JUST watch her…I want to fix her! I just want my little girl to be healthy and happy…this week has been difficult because of spring break…Chad has been home and I have not worked…so a lot of cleaning and home improvements…Maddie has not been on her regular schedule that we practice during a typical week…this concerns me that she is going to be a very scheduled person…something that I am not accustom to… but I am sure I will learn…
Tuesday, March 9, 2010
Has anyone else seen the movie Precious? It was hard to watch…I thought I knew the general idea of the movie…I watch Oprah… I thought I was going to be ok…but lets just say I was shocked and sad…I cannot handle rape scenes in a movie anyway but then…I heard the word “Mongo” and I knew and my heart sank…and I could not believe it…Precious has a little girl born with Down Syndrome…and they call her “Mongo” not a name “Mongo”…. I was so moved by the little girl in the movie…and I was so sad…I am not sure why I am still illusion about people…I just hate that people think my child is less then there child…I hate that my child has labels and names that are just mean…
Friday, March 5, 2010
have you ever looked in the mirror and said…ooh my! what happened…I think I aged over night…we went swimming last night and I saw myself in a swimsuit and EVERYTHING has dropped…really everything…I realize that I am getting older…but this is really something I do not need! I have been under a bunch of stress this year…and I get I had a baby almost 10 months ago…I like to say months…because it is almost a year and that sounds bad that I am not back to my pre-Maddie/Max figure! but I am really one of those women that think that all the weight should go when you have the baby…it should disappear with no effort… I am working out everyday and eating good…but tomorrow I wish to wake up to sun kissed, clear skin and perky boobs, butt and face! I am not asking for much!!