Wednesday, April 28, 2010

it is a process...

this morning when my princess awoke….she looked as funny as ever! her hair in her face…crinkle in her nose... her eyes squinting so tight they were almost closed…but so wanting to make eye contact and smile…when she is picked up she lets out a long loud SIGH…the whole process I have begun to really enjoy…for a long time I felt that Maddie was my duty…a responsibly…a burden…like I was doing her a favor by letting her live…so I think I was feeling resentment (REALLY YA THINK)…towards my Maddie that has done nothing but try to give me love…so when I was drinking my coffee and she was trying to steal sips…I caught her intensely staring at me…then she would catch my eye and she would giggle…the sweetest giggle…and I knew she has forgiven me for all my thoughts of resentment and selfishness…I also realized that someday soon…she will wear my lip gloss, prance in my high heels…and believe in mermaids…just like her mom!

Tuesday, April 27, 2010

lets give a smile!

There is a women (mom) that drives or walks by my house everyday…she drops her kiddos off at school…so I stalked her because I want to ask her what she thinks about the preschool her child attends and the one Max will attend next year…things I have noticed about her…2 kiddos…nice car…boat & 4 wheelers…nice house…stay at home mom….I want all of this….I want the BIG house she lives in…all the goodies like a boat….and I want to stay home and not work…I want to be able to take Maddie to therapy or doctors appointments with out it being a production…I want to be able to take and pickup Max from school…and be involved in his classroom….I want to hold Maddie ALL the time and do her workouts with her ALL the time…and not have to be concerned with 5 other kids….I know CAMPARE is a dirty word…but I have it…I compare all babies to Maddie…and I know if I could work with her more through out the day she would be farther along on her milestones….I noticed today that this women is unapproachable- hence why I have never so much as said hi to her…and she is never smiling…I wonder why she is sad or mad or bored? I wonder if she has a hard life something I could not know…just by watching her for the last 2 years…so I got to thinking what people think of me....I am unapproachable…I hardly smile…and I keep my head down to avoid any conversation with people I do not know…or no longer want to know….I do not call friends or family to make small talk…so I figure I need to change my attitude….I need to stop watching and start participating…I contacted my local Child Development Center and they are going to hook me up with some other Moms that have kiddos born with Ds for play dates with me and Maddie…I think both of us can learn, grow, and I can become more confident as a mother to Maddie …I want to be happy…I want to be content…and I miss my SMILE…

Monday, April 26, 2010

thank you...

Its hard to talk about yourself…and the trials of being a parent…when a person that you have grown to know, follow and genuinely care about…has suffered an imaginable loss…I did not want to believe what I heard on facebook…and continued to hold out hope for the little girl that I have talked about many times with Chad…for those of you not in the Ds community…we lost a little girl last week VERY suddenly…and it threw me into a realization that…my worries about Maddie driving, etc. are as sine…that they are over dramatic…and could be taken down right offensive…. What I am trying to say is that…I really need to take inventory…of the beautiful little girl I have right now…that is trying to show herself to me…and recently I have been really getting to know her personality…her love…her sweetness…I realized that when she wakes up she gives HUGE hugs to me…and yet I did not catch it before….I realized she can give kisses when I ask for them…my Maddie is truly the neatest little girl I have ever met…a little about the blogging community…I have never felt so much a part of something…I have never felt so needed and valued…I talk about you all like I would a friend that lives down the street….your trials our mine…I learn from you all and it helps me grow …and be a better mom…I could have not made it through this year with out each and everyone of you…so thank you for always taking the time to listen….

Sunday, April 25, 2010

Friday, April 23, 2010

another rant...REALLY

I know I need to get thicker skin…I know that I need to relax…but when I first found out I was having a child with Down Syndrome…different things popped into my head…some things I have found untrue and others things have rang true…the other day I was watching an interview with a person that was born with Down Syndrome…the interviewer that addressed the 19 year old MAN…was condescending…”Hi buddy”…usually when I talk with a 19 year old…I say “hey” “hey man” or just "hi"…not a sweet almost baby talk voice of “hi buddy”…why is it we talk down to people…why do we say things in a softer voice…this MAN is 19 years old…no reason to coddle…no reason…to talk with him different…and this guy knows it! I already LOvE my pediatrician because of this…he always says to me…Maddie is a human first…and I will check her and treat her symptoms first and Down Syndrome does not need to come into play ALL THE TIME! so RELAX…

for some FUN news I am going to a fundraiser…that will help support Maddie’s therapy…I am SOOO excited…Maddie has artwork in the silent auction…she is a ROcKStAR… I am going to bid on it! and cross my fingers WIN it….it is a little plate with her chubby little hand and finger prints…it is VeRY cool….I have the perfect place to hang it…I am so proud of her…now what to wear!

Wednesday, April 21, 2010

Just think MOM...

On facebook I join causes for Down Syndrome…because I yearn to know more…it is a compulsion…I joined one that is making me take pause…I am sure it is good for some…I am sure they do great work…and science and progressive thinking is something I encourage…but this Changing Minds Foundation. Treatment and Research for Down Syndrome…is a bit leery to me…and makes me feel dirty and sad…this is what they think I should give Maddie for her to be “high functioning” it is called PROTOCOL a cocktail of Ginkgo Biloba, Prozac, Focalin XR (ADHD Med), Phosphatidylcholine, Body Bio Balanced Oil, B12 and Folic acid… seems very scary to give to my 11 month old…and only have 6 years worth of data…first thing you see on there website is that Ginkgo Biloba is proven…just a few months ago on the news they reported that this was not the case…I saw a post (a "success" story)about a 3 month old that started taking PROTCOL and by 7 months she was keeping her tongue in her mouth, curious, and propping on her arms…REALLY that is it! Maddie was doing all that without the cocktail…I saw a 60 minutes report on Sunday taking about stem cells and ALS…this was an investigation on the person selling “the cure” for ALS …it was a fraud…and $40,000+ later there was still no change in his body…the person who was selling “the cure” said “well what if it does work?” …and of course this is what I first thought about when first saw PROTOCOL…this statement scared me…I asked several people about PROTOCOL…people I trust Doctors, professionals…and they gave me a look with a raised eye brow…and said what are the risks? I could not answer that because I could not find the risks on the website…and lets face it I did not care about the risks…I wanted to “fix” my Maddie…then yesterday I was asking another professional and person that has a child with Down Syndrome what they thought about PROTOCOL…I said what I have been REALLY thinking… I want this cocktail to do something it cannot… I want it to take away her 3rd chromosome…that is what I want…it is not going to happen…we all know that…and to sell that this cocktail is going to “fix” my little girl is just false hope…my Maddie will learn to walk without Prozac…and she will read without Ginkgo…she may or may not drive…she may even get married…but this medication will not “fix” her...only the people that impact Maddie’s life will help enhance her…that is her family, friends, OT and doctors…and most of all Maddie…she will determine what and where she goes…I am at peace in my mind to no longer follow this foundation…I am going to stop searching on the ways to rid our family of our perfectly enhanced little girl…and accept that we are going to be ok…

Thursday, April 15, 2010

YOuR my GiRL...

You’re my girl…that is what a little girl said to Maddie…I cried…this is what I want for my Maddie…to be loved…to be protected…to be made to feel she is 6 ft tall and the shizzz:)…this is what I fear the most…for Maddie not to feel loved…not to feel included…not to feel worthy…I am in fear that a word will destroy her and make her hurt…is that not what sucks the most…our children feel pain when they are born…all the needles all the doctors…poking and prodding...and then the pain continues…with looks with stares…with the ignorance of others…last night I saw a girl with Down Syndrome…I stalked her through Wal-Mart and I think her dad noticed…but it is how I learn…how I am accepting Maddie…by watching other people…I needed to watch the man interact with his daughter…it was good…and I realized that again Maddie is more like me then she is anybody else…I need to remember this…she my girl…

Wednesday, April 14, 2010

Maddie Time...

Maddie loves to dance…and she now dances by herself! VeRY CuTE…she goes back and forth with her head…and really seems to feel the rhythm…so today was windy…60+ miles per hour and Maddie cannot breath in our Wyoming hurricane…so we did the chicken dance! she loved it…she laughed, she bounced and we soared…I love to watch her smile…she is having issues with me , Chad and Max walking in and out of the room! I hope this passes soon…you should see the faces and grunts she musters up just to get us to turn around and then she giggles…yesterday I gave her eggs and she did ok…so I gave her pears in the afternoon...I was so excited! Then she threw them all up…it was not good…I do not know if it is the acid from the pears, to big of chunks…or just that she hates fruit….am I going to fast with her…I just feel like she is not moving along! I am scared she is showing delays….She is going to be the BIG 1 years old next month and well…Maddie moves on Maddie time…and Mommy needs to get over it!

Monday, April 12, 2010

that word again...

burning sensation you know when your stomach is on fire…when your stomach sinks…and your heart breaks…you know that feeling…when someone has used the “R” word…it was a stunning comment coming from a 5 year old with a smirk…my reaction harsh, fast and to the point…not in my home-- not in my presence…and I turned and walked away…I would normally feel guilty about this reaction and how I handle it…but not this time…I am not sure why this same reaction cannot happen when a adult says it in my presence…why is it I usually let them slide…and make an excuse for them…and say well they did not mean it “that way”…but with a 5 year old…I get to the point…yes it is a teachable moment…and maybe she will learn not to say it again…frankly it pissed me off…and it pisses me off more that I do not confront adults with this same passion…I did have this debate with my brother a couple of weeks ago…his point of view was of course for free speech…he does not mean it “that way”…I simply said are you going to say it to Maddie? he blew me off and a couple of days later he was with friends…said the “R” word…and the mom said great the “R” word! My brothers heart sank and got the burning feeling in his tummy….he then replied I know that I just screwed up HUGE and I am sorry…they discussed it and he came to see the light! but it did take him saying it to a mom of a child with a disability…why cant we just be nice?

Sunday, April 11, 2010

my short comings...

I do not look like a mom that can have a child with Down Syndrome….as I stomp my feet, pound fists and cry...I remember saying (yelling) that over and over to Chad…of course this was a HUGE stereotype and ignorance on my part…when I began this journey I would see other moms that had children with Down Syndrome and I would hit Chad and say see---see---look at her…she is beautiful, she is young, she seems so cool so happy…I hope someday I can be like that mom…it is silly how it has taken me a year to be able to utter these words…I am a mother of a child with Down Syndrome…I am not ugly, frumpy, OLD, stupid, and I am no longer ignorant to the subject of parenting a child with Down Syndrome…to think all this came to me while I was trying to get skin cancer in a tanning bed!! I am trying to put the vitamin d in me to help with my moodiness…I think it is helping…and I am smiling

Saturday, April 10, 2010

am I singing the blues...

Postpartum depression, baby blues…do I have it? did I have it? Maybe…
***Courtesy of BabyCenter
Could I be suffering from postpartum depression? If your mood doesn't lift after two weeks, you may have postpartum depression (PPD). Up to 20 percent of new mothers experience clinical depression, which can surface any time within the first postpartum year.
Symptoms of PPD include:
• insomnia
• weepiness or sadness
• diminished interest in once pleasurable activities
• difficulty concentrating
• change in appetite
• anxiety
• moodiness and irritability
• withdrawal from family and friends
• excessive guilt
• panic attacks (symptoms include a racing heart, dizziness, confusion, and feelings of impending doom)
• suicidal, scary, or constant negative thoughts

this sounds like a “normal” day in my gamut of emotions! so when I was pregnant with Max…the whole Tom Cruise thing happened…and I was so outraged I have not seen a Tom Cruise movie since…and I just want to say I do not agree with him at all…but for me-- this is my journey…and I will listen to the voices in my head! so with that said…as I am processing this new life….I am beginning to deal with the facts that are in front of me…the fact that I have a child that has an extra chromosome that seems to make some uncomfortable and say ooohhh!! BIG sigh that follows…do I have any of these symptoms of PPD…of course…and it is exasperated by reactions and comments from others….that I let get under my thin skin…but a pill is not going to help---because today I think I can self diagnose and properly treat! so in a couple of years…when I have to get off of the medication…my little girl will still have the extra chromosome, heart issues, and TEF…and people will still look at her with pause…and they will not look at me…so I have decided that I will not medicate myself…I am not saying it is wrong for others…but it is not for me at this time…I have to work this out in my head…and embrace that my little family has a little extra…and I like that part…what I do not like is how friends do not want to understand…and family members pretend it is not happening…well Maddox happened and as her mom I have to make it work…the other night at soccer…a mom that is pregnant kept on talking with me…which is good…she kept trying to see Maddie…I was a little put off by this…it was windy and in my very short experience I am very leery of other peoples responses…Maddie began to fuss so I took her out of the stroller and the pregnant women literally gasps -- loud ---then says something to her husband…then the uncomfortable silence came…nothing was spoken after that…and she was not at the game today…I know my Maddie is cute and funny…but that reaction is a little dramatic even for me...so do I have the baby blues…maybe…and sometimes other people just do not help!

Friday, April 9, 2010

Facetime...

I have two sides…a side that blogs…and the side that pretends…a friend who used to read my blog said…that my blog is my therapy…so do not read to much into it…partly that is true…but sometimes when I blog I search out for help, support, and advice…sometimes I blog…because it is easier to tell the truth to a computer screen then it is to people in front of you…I do encourage my close friends to read my blog…because it is the only way they will know how I am doing in my head…I cannot talk in real life how I type on the computer…so recently a couple of friends encouraged me to network through facebook…(special thanks to Monica & Lianna) it truly never occurred to me that I should or could do this…we started with facebook when Maddie was born…it was just easier to post once to facebook then it was to make the many phone calls…lately I was becoming disenfranchised with the whole facebook scene because of the high school feel of it…I could not network blog with facebook…because I was afraid people that I used to know may read it…I am still struggling with my feelings and my self worth…I am so afraid of being judged…that to put out to the world that I am a mother of a child born with Down Syndrome…and that I am not handling it gracefully….makes me vulnerable and scared…but after meeting so many different mothers on facebook…I think I need to network on the giant blue face…when I began blogging I thought…who would want to read about me…and my journey…turns out I am not the only one going through this journey….I realized that if people who use to know me or currently know me and just do not want to know my state of mind…can hide me…because really that is what I have been doing is hiding…I am tired of hiding…I am tired of pretending…I want to come into being me…whoever that may be…

Wednesday, April 7, 2010

Baby Weekly? what is up!

I wonder if they make a baby weekly update for babies born with Downs Syndrome…I have been getting updates for Maximus since I was pregnant with him…and I get updates for Maddie…however…none of them apply to her…when I try to look something up on the site/link for her…it is so general and not updated…with current research and thinking…it is frustrating…I get that my Maddie will do things every child will do…and I get that it will be on her time…but really I want the baby weekly to talk to me…to give me a uh ha moment! Maddie is getting such THICK thighs they no longer fit in the braces for keeping her legs together! I want baby weekly to tell me this is “normal” and just healthy! she is talking and singing in the middle of the night…I want baby weekly to tell me that this will soon pass! that she is a genius revisiting and re-living her great day! Maddie is beginning to kinda suck/spit out of our friend the honey bear…I want baby weekly to say Maddie is amazing to already be doing this HUGE milestone! Maddie is doing patty cake (clapping motion) for herself now! and I want baby weekly to put her picture up and say YEAH for Maddie!

Sunday, April 4, 2010

Guilty, Jealous, and Envious...

Guilty…I am beginning to feel guilty…I am not sorry though…I promised myself when I began this journey in blogging that I was not going to be sorry for my feelings…for my emotions…I told myself I was not going to lie to myself or anyone else…and pretend that everything was ok with me…with that said I do feel guilty of how I have related to Maddie…I feel guilty that I did not want her right away, that I did think about terminating my pregnancy, I feel guilty that I have not allowed myself fully to her…that I am just beginning to celebrate her and understand what it is to be a mother…not just to a child with disabilities but to my children in general…it truly has taken Maddie for me to understand Maximus…Jealous…I am jealous of where others are in there journey…I want to be just ok with everything…I am tired of my state of mind…and I think I am finally taking steps to recovery…but…I am jealous that I cannot just post HAPPY all the time…I am jealous that I am not as excited as most about Maddie's milestones…I want to be excited…but I have that voice in my head saying would this be great if Maddie was not born with Down Syndrome…Envious….I am envious of people that have chosen this journey…the journey of parenting a child with a disability…I think it would be amazing to choose to be Maddie’s mom….not have it sprung on me…I understand Maddie was never not with the extra chromosome…I just wish I could say that I wished for her like she is….I remember a person saying to me when I was pregnant with Maddie “congratulations in having a child born with Down Syndrome”….my response was not nice to her…and she responded to me and told me her story of how her and her husband were having problems conceiving…I thought to myself…I am sure she goes to sleep every night in hopes of getting pregnant with a child and pesky third copy of her 21st chromosome…I am sure that is how she prays to her god…I am not sure I have ever heard any person wanting what I have in the beginning of there quest for having children….until Maddie is starring at them with her big blue eyes…and then they say…well at least she is healthy…she will be fine…it could be worse…all of those things are true…I am envious that I am not that person that choose this journey….I so want to be that person…

Friday, April 2, 2010

Silly me :}

Silly comes to mind…when I look back at this past year…silly for how I have approached everything that has to do with my daughter…silly that I thought my little girl would not smile because she would be as mad as her mom about carrying an extra chromosome…I never thought she would laugh at her brother and follow his every move…I really believed that she would not love the little things like riding in the car and going over bumps FaST…she giggles sooo cute…it is heart melting…silly that I thought she was going to be “different”...silly that I thought we were ALWAYS going to be in the doctors office with her being sick…silly that I thought she was not going to be naughty and feisty…turns out she is both…silly how I would not put her in elastic waist band pants…and now realizing it is really all that she likes to wear…silly that I thought she would never be invited to a birthday party…or want to grow and learn…but it is really getting obvious that she is more like a “normal” little person…then a child that needs to be looked at different…or with pause…a friend said to me…Maddie looks just fine with having Down Syndrome…”she is” I said…I seem to be the one that is not fine…so as silly as it may seem sitting in the movie “How to train your Dragon” I realized that I am the dragon being trained by Maddie…everything I thought I knew about my little girl…the stereotypes…the “how to” books that tried to warn me, scare me, and help me…are just plain silly…