Sunday, November 29, 2009

I may offend...

Maddox is not less of a daughter….I do believe this to be true…but I have many shortcoming….I understand needing to get over myself…I also understand I need to figure this whole insecurity thing out…I am sure most people are saying get through this ALREADY…the other day in car…(I talk to myself)…I said “Really Kim just get over this TODAY”…I could be such a great advocate…if I could begin believing what I tell people when people want me to answer questions or pretend I am ok! so I had a few days of bliss…I thought Maddox was cute and funny…and smart….everything she is but then…I see something that sets me swirling down into pure sickness…I see an image of something I am SOOOO not comfortable with…for example I think I can handle Down Syndrome and then I see I am not ready to venture out of my very layered and censored life…I really only let certain images into my view…I do this as a coping mechanism…I am very tiered of most people telling me that Maddox is a blessing…or that it is a non-disjunction event when sperm met egg…that I will be forever changed for the good…why does a story about a person with Down Syndrome have to be inspiring or heart warming…why can it not be about MY truth… that having a child with Down Syndrome…is scary, sometimes sad, frustrating, hard, and complicated…maybe I am the only one…I am frustrated with people insinuating that I am some how going to feel that this is the best thing I have ever experienced…that I will grow with this experience…I am waiting for these things to happen…and if Maddox is the best thing ever and a true blessing where does that leave Maximus…does this short change Maximus that he is not the chosen one…Maximus always says “I love my sister” “she is perfect” with a hug and a kiss…I think he is trying to tell me something…

Wednesday, November 25, 2009

Roller Coaster...

Every morning I still wake thinking that the “no bubble” ultra sound happened…I lie in my bed thinking today is the day I wake up from this dream…I think that this is the day that Maddox will be “normal” with no health concerns…this is a TRUE life roller coaster I cannot seem to get off of…some days I feel good about Maddox…I feel I can be her mom…that down syndrome is the least interesting thing about her…and that is true some days we are rockstars! I seem to go in highs and then I check myself back to reality…yesterday Mrs. K Maddox’s OT said that she was doing AWESOME!! That she thinks she will be sitting up sooner then later…like in the next couple of weeks…that her trunk control is strong…I video tape there sessions so I can work with Maddie throughout the week … she picked up small blocks and took them out of a bowl…she is amazing…but really would I be that amazed if I had not labeled her…would I be amazed that she may be sitting up sooner then later…I cannot seem to let down my guard in fear that something will happen…that we will get another diagnosis that I do not want…this holiday season brings up memories that are unwelcome in my mind …I suppose it is time I rewrite this holiday season…

Friday, November 20, 2009

Support...

Supportive…what does that really mean…I am not the most supportive person…I am when it comes to family…or friends that mean a lot to me…but going through the whole pregnancy, diagnosis, and now day to day…I have found what it truly means to be supportive and be able to accept support…I remember someone saying to me…that I needed to learn how to just say thank you…when I was pregnant I had such strong support…everybody excited about the new baby…then I had the “no bubble” ultra sound…people started dropping off the radar…others to my surprise took a great interest and started investigating what was going on with my little Maddie…I thought I was pushing people away with my attitude and sadness…then I realized it was the unknown of Maddox…that “different” is not easy for most people…through this I have found true supporters and new supporters…and I have learned to say thank you…and really mean it…what I am learning and that is hard to understand…is that only me, chad, and max will have a true inside look at living with a person born with Down Syndrome…and only Maddox will know how it is to live with Down Syndrome…others will come and go and think they know...and say I am glad I am not them…but little do they know…I have a secret…my family ROCKS…and these days there are more smiles then tears…my family is just like yours just a little more enhanced!

Thursday, November 19, 2009

Be Nice...

The other day talking with my Brother…he made a point that I cannot believe I have never thought of! My Mom was diagnosed at 12 years old with children’s rheumatoid arthritis…back in the day this was not a good thing and sometimes not manageable…but she was linked with the best care at the Mayo Clinic in MN…so she was able to have a full…but NOT pain free life…my Brother said “I am sure Grandma and Grandpa did not handle Moms diagnosis great”…I never thought of that…then I thought of my Aunt and Uncle that have a mentally disabled child (my cousin)… I never thought of anyone else in my family really going through what I am going through…I like to think I am unique and one of a kind! hence why this is so challenging for me…this past week has been raddled with name calling…I saw a post about the “tard supper” and then I read another post about a child calling another child that was born with Ds a “retard”…I am deeply challenged by this…I am sick to my stomach…I was raised not to talk with that language…I do not say nigger, or refer to things as “that’s gay” and I do not say “retard”…how will I teach Maddie to stand up for herself? How will we teach Max to stand up for his sister or others? I remember in middle school being made fun of…and it hurt so bad that I thought my insides were falling out…I remember crying and not wanting to walk out of that classroom…where I knew the boy would be standing waiting to call me names…I could do something about my weight to make the harassment stop…I could pretend it did not bother me and get through it…but I cannot change Maddox, or the color of peoples skin, or there sexual orientation…full circle I wonder how my Grandparents handled my Mom getting made fun of…I am sure she was… her hands were crooked…she could not run…and she just hurt…but she was beautiful…she found my dad…they made me and my brother...and she seemed happy and full of herself...I guess I will teach them like I was taught…JUST BE NICE

Saturday, November 14, 2009

Just be...

Sometimes I wonder what I thought about before I had Maddox…Down’s Syndrome has consumed me…it is what I talk about….think about…read about…when I was pregnant with her and we got the diagnosis I remember hoping that…she was just “slightly Downs”…or that she was Mosaic, Translocation, or only partial Trisomy 21…I asked the doctor if we could test….so we would know what we were dealing with…today I still do not know what we are dealing with…Maddox is doing amazing…she is rolling and reaching up high for things she wants…last night she was chasing a ball with her hands and scooting on her belly…she is so happy, content, funny….and she LOVES to laugh…I have never met a person that loves kisses as much as her…(do not tell me this is typical of Ds)...so this is where I get selfish…I start thinking what if she did not have Down’s Syndrome…I wonder does any of this great progress at 6 months old… really mean anything…is she still going to be teased and judged….is society going to see the Down’s Syndrome first and her second…or never get to know her…is she still not going to be able to drive…when does me being content happen…

Wednesday, November 11, 2009

Grandma...

Today a little girl said “someday you will be a Grandma”…I responded “maybe”…”if Maximus decides to have kiddos”… she said “no when Maddie has kids”…I responded “Maddox will not have children”…she of course asked “why” and I responded so sure of myself…”because she has Down’s Syndrome”…the little girl looked at me cross and just said “huh”…then I thought WOW that sounds like I have taken a choice away from Maddie… that I have no right to do! And 4 year old new it! I am troubled by this…I am not sure how I feel about Maddie having children…and will I be equally unsure if she cannot have children and she wants them…I understand she is 6 months old...but I am always planning for the future and “what ifs”…and this is another issue I have no control over...I remember when I was pregnant with her I told my husband we would have her “fixed”…that is so ugly…I am mad at myself for thinking it…so many things change when you have your little girl staring you in the eye…she is a human first with rights, wants and desires…and I need to just let it play out… and maybe relax!

Saturday, November 7, 2009

What ifs...

Maximus comes running out of the bedroom...just waking up from some good long sleeps…he is so full of life and himself! he is already asking if daddy will be home and if he has got his deer! he has a smile that melts my heart and spunk that makes me giggle…when Maddox sees him she has a grin from ear to ear…he always greets her with a BIG smile and an I love you…Maddox is always looking to make a connection with her 2 favorite people Max and Daddy…she stares at them until there is eye contact and then a full body smile happens…it is the best thing I have ever seen…I think that makes things harder…that they are just so adorable… I still am having a hard time believing…that I have no control…that I cannot make my family “normal”…there are days I would not change anything…the other days I am still just pissed…I suppose this is because I have been thinking a lot about the “what ifs”…it is time to decide who will take care of my children if the “what if” happens…I suppose we can minimize risk and never travel with one another…so we both will not die at the same time! Maddox throws a whole other dimension into the question…who will take care of my children if something happens to me and Chad…with Max it was with people we trusted and loved…but now with Maddox…the people we entrust have to be willing to except what comes with our Maddox…they also have to except the challenges…that they may have to put there life on hold for her…that Maddox may have to live with them forever…that they may be taking care of her for there entire life…I will not put her in a home…I want her to have a “normal” life…I suppose if she chooses to live in a residential home….that is what we will do…but I will never make her…so it poses the question…what do we do…who do we ask…to take on the life of the person we created…it is cute now…she is a baby…but I need to know my baby will be taken care of when she is 20, 30, 40, 50, 60, 70, 80 years old….she will still be my baby…but the world will view her very different…I do not want Max to feel he has to take care of Maddie…but I want him to if he chooses…this is the ugly part of life…making decisions…on “what ifs”…hoping you are making good choices for everyone in play…

Wednesday, November 4, 2009

Dreams...

I received a calendar featuring kids with Down Syndrome…and each month they have a little getting to know them…and information on Down Syndrome…I love it …and it has helped me a lot…funny how small things do…this month it highlighted something...I often forget…or maybe I have never stopped to realize…that people with Down Syndrome DREAM…how selfish of me not to think this…of course I want Maddie to dream…and dream big…I expect that for Max...why not for her…I wonder what she will be…I wonder what her interests will be…I wonder if she will take after me, Chad or Max…or will she be like Maddox…on the calendar it says people with Down Syndrome are terrific students, friends, and valued employees…how about we not limit that…I am sure my Maddie will be a great student…an even better friend…and maybe she will be her own boss…

Sunday, November 1, 2009

Treats Please!

Trick or Treating rocked! Maximus loved every minute of trick or treating… he ran to every door and told them to have a Happy Halloween…he is so funny with a lot of spunk…last year he taught some nice little friends some “boat language” that’s naughty words…this year he just told a man that is house was CREEPIE! When I see him run and love life as full as he does…I get excited to see Maddox develop…he has already rubbed off on her…she is VERY vocal and screams just to mimic Max…it is loud in our house these days…I do feel like I have been TRICKed into what is Down Syndrome…there is so many unknowns to Down Syndrome…parenting Maddie has not been what I expected…she is much more “normal” developing then I could have imagined…again I wish I went into this journey with not so much reading and false assumptions….there is times that I totally forget that Maddox was born with Downs Syndrome…and then I am actually start led when I realize she has it….I even go through the emotions of the diagnosis again… it is a very strange emotional rollercoaster…I am having a hard time rapping around that there is no answerers…no planning…no fixing…just hoping that I am doing the right things for her…I so want her to drive…yes I am still hung up on this…I want her to be independent and find happiness…I hate when people say she will be happy…she will be content….ooooohhhhh that rubs me the wrong way…Maddox has been more of a TREAT then I could have dreamed…she is SMART, cute, funny, and soooo cuddly…who knows what life holds for us…I guess we will see how we handle it when it comes….I hope it is more TREATS then TRICKS!