miles 4 stones...

Milestones…what are they really? It is intense to think about how much I obsess about milestones…I am very aware of what needs to happen and the order in which milestones need to occur…and I am also aware of the delays that are upon us…when Maddie rolled over it was amazing…I would have never imagined that rolling would be her main route of transportation…her OT tells me…its good! She is rolling with purpose! When she began to move forward it was so slow and weird…I had never seen anything like it…it has evolved to a full army crawl that seems very hard and not well coordinated…she tries so hard…she gets going with her arms…one over the other… her poor elbows good thing she has padding! She will pike up her legs to a full upside down V and then her little toes join in…her little toes I swear do most of the work…I have began to wonder if that is why they are webbed so she can get more push out of them! Her crawling is coming along…but she hates squatting and kneeling and of course that is what we have to work on the most! So she is very irritated at me most of the time! But in my head I have the milestone police cheering us on! Milestones are daunting and heartbreaking…so when Maddie began sitting steady on her own…I thought it would be a couple of weeks and she would sit up on her own…not so much…weeks turned into months…. I did noticed with every week her core getting stronger…she was gradually sitting more erect and less with her arms and hands propping her…. for about a month she was close to getting to the sitting position herself…and even transitioning to laying down with ease instead of a throw down and knocking her head…it was funny when I would see her in the side pre-sit I would run over and grab her leg so she would sit up…. but then she would give me a dirty look as if I had messed up her life! But then she just did it…with her OT cheering her on…it was amazing I got the video camera and it was truly overwhelming…. I was so proud of her…I can not explain the pride I felt the heartwarming emotion that over came me…I was in tears…all for her sitting up…I told everyone…I texted, I called, I blogged, everyone that walked through my door had to watch the big event…I was scared that I was going to have a let down to her sitting up…you know when you get a BIG rush you have the cooling off period…it did not happen this time…because Maddie clapped her hands…it was just as wonderful as her sitting up on her own…funny it was 5 days ago when she sat up on her own and everyday I think will she do it today again…and she has…yesterday she even sat up just because she wanted to…not because I prompted her…so this week is in the record books…my baby can sit up on her own and she can clap her hands…I am not sure what is next and today I just do not care…because we have put the milestone pestering to bed…we rest Sunday and begin again!

Missed...

last night I had a great time having sushi with a great friend…and catching up…I did not want to come home…that is simply put…I just wanted the time to be me again...a singular person…just me…not a mom….not a wife…not a person with responsibilities…for that instance I thought would they miss me? would they notice…my life has become a routine and a beckoning of everyone else needs and desires…make this appointment…do this…do that…I have crazy thoughts when I drive…when I was pregnant with Maddie…I wanted to get in a car wreck to stop the hurt I was feeling and eliminate the person growing in me…because I was so scared to have a child born with Down Syndrome…and every other diagnosis that was awaiting her arrival…it was a split second thought that felt like a life time…it jolted me…it made me sick to my tummy…I did not feel guilty about this thought and I still do not…I think it is what we do when we are faced with turmoil and the unknown…so I took the long way home last night…when I got home to my surprise… I was greeted with Max opening my car door…and a BIG smile and kiss “I missed you Mommy I thought you were gone forever” and Maddie was jumping out of Chad’s arms to give me a hug and lick…I guess this is one of those times that it is good to go home and see what can happen…sometimes it turns out ok…like Maddie she has been more then I could have wanted and far more then I could have imagined…good thing for a conscience…

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Maddie sitting up for the 1st time by herself! huge milestone day!!

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Do we live to our Label...

we live up to our label...I heard this the other day and it has been eating at me ever since…I have thought about my life and the labels I have been given…I have lived up to them…and sometimes I have defied them…. sometimes I excepted them…and other times I just ignored them…Chad is teaching summer school and as I have discussed this with him…he agreed about the kiddos he is working with have been living and not exceeding there labels…I think of Max and the labels he has been given…smart, quick witted, strong, funny, strong willed, and rambunctious…when he does not live up to these labels we tell him to use his brain…we challenge him in knowledge and strength and try to encouraged his free will and spirit…in spite of this not always being a strength! And then there is Maddie…and the labels that have been given to her…I will not list all of the labels that doctors and society has bestowed on her…this afternoon I picked up the book and read Gifts again for the third time…this time was different…this time I heard different messages and I was not so busy looking to connect to every story but I tried to learn something from each family…this time I realized each story had a similar theme…a theme of deifying LABELS…each mom said that there child with the extra chromosome had defied the odds of survival and potential…so today Maddie has some new labels and I cannot wait to see what she WILL exceed and defy…

Censored...

is how I feel sometimes…it is how I think sometimes…and it is how I discuss Maddox…I am not a fan of being censored…I remember my dad telling me when I was a teen that I needed to get a class in being assertive with tact…because I had the assertiveness down but NO tact…so over the years I have censored myself…thinking before I speak to people I do not know well…as of late I seem to censor everything that comes out of my mouth…. and to everyone in my circle…I have noticed if I tell my true feeling about Maddie and her delays I am shut down to “she looks good to me”…”maybe she is just being a typical baby”…”she will someday do it”…when people ask how Maddie is doing…the phrase that I dislike intensely…I have learned to say good…she is good for Maddie…because no one wants to hear a sweet cute little girl that is 14 months old cannot clap her hands yet…she claps things just not her hands….they want positive and cute to make themselves feel better….and I get that…with Maddie’s healthcare…the doctors have taken a wait and see approach…SHE IS STILL EATING BABY FOOD! and still NO teeth! and from friends I get the you are over reacting response…I feel censored when I am thinking about the “r” word…I am not a fan of the word…and our family does not use it…but I am failing in making people around me stop…I seem to make excuses for them…about why they said it…and most of the time I do not feel it is towards Maddie…but I know to NOT be a hypocrite I really need to educate people…my expectations for Maddie are very censored…I know I need to be positive and NOT so realistic because it may hinder her development…I feel censored that I am still not comfortable around aging people with Down Syndrome…I will try to raise money for the Buddy Walk….but I still cannot join in…I know I should…but I do not want to cry….and show my insecurities…I am soooo trying to live in the moment and love the moments with Maddie…and I do love the moments with Maddie…I love how she sings, dances, cuddles, blows kisses, clicks her tongue and french kisses me with passion! but my reality is different then most and I cannot seem to censor it….

this or that...

Would you NOT rather have your child grow up to be a drug dealer then a drug addict? This was said on the Stephen Cobert last night and it took me off guard and made me pause…because it is so true! Of course I rather my child became neither…but if those were my two choices the dealer seems more resourceful…I am not sure why but this got me thinking of Maddie…and her being born with Down Syndrome…statistically it is highly unlikely she will become a drug addict or dealer…so that is the good news! This just brings up the obvious when having a child with special needs…I am not sure of anything…but then again I am not sure of anything regarding Max…this is the difficult part of parenting…the unknown…we know what we want for our children…we want more for them then we had as children…this where I struggle with Maddie…will I ever do enough for her…will I ever give her the opportunities she needs…instead of thinking I know what she SHOULD want…the other day I was watching Forrest Gump…I love this show but this time watching it …took on a whole new meaning…I told Chad if Maddie can have the life that Forrest Gump had …she will have lived a full life! He was able to run when people said no…he was able to love…even if it was from a distance…he was an athlete (ping pong!)…he was able to become very wealthy self reliant…and even become a parent…but best of all he was a GREAT son…I guess life is just like a box of chocolates…you never know what you are going to get!

Makeover...

Mommy makeover…this is funny to me…someone yesterday mentioned it to me…and I guess I have never heard of it before…I am not sure if I would ever do it…but I sure do need it! after I had Maddie I thought all the weight would fall off and my hair and skin would be as glowing as when I was pregnant…that of course was not the case…but in this year I have gotten back on track with exercising but not as consistent as I would prefer…and the reasons have changed immensely…after Max I exercised for perceived beauty and a thin body….now I exercise and eat good for my mental health and to live a long life for Maddie…to be able to help her as she gets older and challenges she may face…I am a very self conscious person…and it was exacerbated when I did not produce a “normal” child…in this year I have worked on that self doubt and self loathing…I have a perfect little girl and I would not be pleased if she picked up on her mothers insecurities…I would hate for her to have a poor self image…and even worse if I was the cause of her self doubt…I watch other women and I always think…that was me a long time ago…so put together so fashion forward…now I am a stay in my house mom…it is a wonderful gig…and I have made a huge step by telling my hair cutter that I could commit to doing my hair and getting it colored and cut every couple months…last year at this time that was not an option…I guess I am going to be ok…baby steps…and one moment at a time…

Stay on Today...

I have been down lately…but today I decided to change that…we went up to the mountain and took a hike and had a picnic…it was just what I needed…something’s I thought long and hard about while walking through the wildflowers and dancing trees…is I am thankful I have Maddie…I am thankful that I am getting to watch her grow, learn, and smile…I know that life is fleeting and not a guarantee…so my days of looking ahead are put to bed and cherishing every moment is back in…this is easier said then done…it is also very taxing to stay in the moment and not let my mind wonder…by nature I am a daydreamer…so I have to figure a way I can daydream about this day…not week…that is still to much in the future…you see Maddie will one day amaze me and the next day act as if she has never done it before…my goal for this week is not to get frustrated and down when Maddie is not performing as I think she should…she so wants to be a big girl…I can tell with her new glasses she sees everything and wants to feed herself…she is now putting everything in her mouth…and her hands are very quick...problem is she cannot physically eat…she has no teeth and her tube to her tummy is just not big enough for solid food…so I feel I am inhibiting her from accomplishing a monumental milestone of self feeding because I am so scared for her to choke…we go to the doctor in a few weeks…and hopefully much needed help….for the time being I will  focus on what we need to accomplish in regards to milestones to the present…bearing weight on her legs, 4 point crawling, and sucking out of a straw…and leave the driving, college, and marriage to another day…

Be Mine...

Maddie is blowing kisses…it is so sweet…and I am beyond proud of her…there is some prompting…and not every time does she do it…but she is doing it….she is also starting to really dance…and giggle…my Maddie is simply put a bundle of greatness…that is where my heart ache comes from...I know how perfect she is…how funny…how sweet…how loving she is…just because she is my Maddie…what scares me and keeps me up at night…is will we be the only ones that get to know the greatness in her…I haTe when people say well she may not want to date, fall in love, or get married…have children…my question to them is…did you? Because I am sure my Maddie would want the same…I am sure she will want to dance and receive valentines…I am sure she will want to fall in love and enjoy a kiss…but society says different…they say she will live with me or in a residential home…that she will have a babysitter…maybe not around the clock but there will always be someone checking in on her…so again I ask is this what you want for your child? I want more for mine and I mourn the loss of the dream I had for her… I just want so much more for her...I know I do not know her future and I know this can all happen on the off chance that the stars all align…but in all of this I have learned to get real and not give myself or others false hope…because all it does is hurts Maddie… because I am the one she will come to when she has been told no to dance from the boy she thinks is cute…I am the one that will hold her hand when her friends and brother are getting married…I am the one that will be there when she is 30 years old wondering what we will do next….that is our reality…so today I will stop looking into the future and stay with the day to day...it seems much more promising…

samething...different day...

These days I have been feeling blah…I think I am becoming numb to the rituals of everyday life mothering a child born with Down Syndrome…she amazes me most days and has captured my heart…but there is this little voice in the back of my head saying what the f**k…how did this happen…people who do not have a child like mine do not get it…and silly me on thinking they may have the empathy or patience for my up and down moods and emotions…the day in and day out rituals one must perform…everyday whether on “vacation” or at home…is the same thing EVERY DAY…how we begin a meal, how we go to sleep…any transition must be in the sequence in which we do everyday…the constant worrying if I am giving her medications at the times needed…did we complete our therapy routine…where are her glasses...did we get that doctors appointments….is she stricturing or aspirating…why is it she cannot eat any solid foods and she is almost 14 months old…at the 4th of July celebration there were 3 girls that were born with Down Syndrome hanging out together…I am sure I was the only one who noticed and I am sure I am the only one that followed there every move…they cheered for the baseball team…and enjoyed hotdogs and pepsi…it was nice to see what a “normal” life they seemed to be living…they were having a great time together…it made me think of true friendship…something I think we think we know…but we do not…these three girls share something not many do…a life time of stigma…they understand that stigma…they understand the stares…I know the girls names and I have one of the girls numbers maybe soon…I will be ready to have a conversation with one or all of them…to help me understand…to help me be a better parent to Maddie…so she will not have to live with that stigma in her own home…