Sunday, October 25, 2009

being me...

U look tired…u have changed so much…u just do not seem yourself…comments that have frequented conversations lately…it is amazing to me that people have such a problem with empathy and/or understanding…I understand people not knowing what to say to a point… or how to react to me or my family…but Down Syndrome is not a disease you catch…it is not something to fear…I am tired…and I am not myself…I am tired because I have an infant child…that thinks she needs to talk in the middle of the night…I am tired because I am worried about her breathing, temperature, and just overall health…I am tired because I am carrying extra weight…I am tired because I have a daycare that keeps me on my feet all day…and I am tired because I also have a vivacious 4 year old…like any other mother…that has children…I am not myself…gone are the days… of that cannot happen to me…10 short months ago…my world changed…probably for the better…but it changed…who loves change…especially when you did not ask for it or want that change…I am not myself because I thought that I could handle anything…I am not myself because I have had to become more aware of my surroundings…who I let in to my world… I am not so eager to meet new people or keep in touch with old friends…that cannot help in my world…I realize this sounds selfish…but I have to be…I am a mother first…and a friend second…this may change as my role in this world changes…but for now I am not myself…I am searching for me…when you have a diagnosis of this magnitude…that you cannot change or fix…it humbles your entire being…I will live with a person born with Down Syndrome that I created for the rest of my life…I am frustrated that I will never fully understand what Maddox will feel and endure…I am different and I have changed…but I am better, stronger, and more clear then I have ever been…it is amazing when you are challenged this much…how stupid things no longer matter…but again I think this would be the case if I had given birth to a “normal” child…

Wednesday, October 21, 2009

Dance, Laugh, Love...

And today we danced…me and Maddox…she smiled and laughed…and I love her…I mean really love her…I am no longer afraid she will live with me forever…because I want her to…I think she is funny…and smart…and interesting…I bet when I am driving her on her first date or to work…she will make me smile and cry…out of happiness…out of love…today we danced…and I knew I was going to be ok…I hated the Down Syndrome…but it is not that important…Maddie will teach me more…I think she has taken away my fear of being her mom…by just being Maddox…

Saturday, October 17, 2009

Pumpkin Saturday...

Lazy Saturdays are priceless…Maddox is on the mend and feeling great…and Maximus is loving the weekend of all daddy time…these are the days that make me thankful that we are all healthy and happy…this week was full of should I…or should… I not call the doctor for Maddox…but she pulled through nicely and she is as spunky as ever…she is rolling both ways and following and finding her brother… she is amazing…we went to the pumpkin patch and picked out pumpkins and got them ready to carve…last year Maddie’s pumpkin was a question mark…WOW was that ever a huge premonition of what was to come! we knew we were having a baby…but I never in my wildest dreams would have thought I would receive a baby that was more then perfect…she is today looking at me with a full body smile and a great big bold raspberry…with pig tails…I am looking forward to many more fall Saturdays!

Wednesday, October 14, 2009

Fixed...no thank you!

Today I made the whole Down Syndrome declaration to a total stranger…I did good…she was staring at Maddie…and was asking good questions…not offensive ones…and then…I said she was born with Down Syndrome…she said “I thought so”…she is a professional that works with our local Child Development Center… I was so proud of myself...I was not embarrassed…ashamed…nervous…just…proud and excited…did I just say that…look at me coming along! This woman had a little girl born with her intestines on the outside of her body…WOW…that would be a hard one…the thing is they can fix that… and the little girl has a story…you cannot fix Down Syndrome…and today…Maddie does not need to be fixed…she just needs to be Maddox…She is sick AGAIN!! that does need to be fixed!

Sunday, October 11, 2009

More Aware...

Silly-goofy as Max would say…how events come together…while walking into Safeway the other day I was carrying Maddox…she is very interested in her surroundings...loves seeing faces and places…we are not in the door 2 seconds when a women comments….oooh what a cute baby…how old…I say 4 almost 5 months…but she is to small she says….oh shut up I thought….then no 2 minutes later...the pharmacists says how many WEEKS is your baby? I said she is 4 almost 5 months…the confused look in her face was priceless…then she says all preemies are small like that…I thought to myself…Maddox was not a preemie she was a big girl! But I let her think what she wanted…then when I was checking out the cashier asked me if I would like to donate money to breast cancer awareness month...while watching the today show I see t-shirts and signs with what October month means to so many people...but the sign I see lacking is the Down Syndrome Awareness month…I guess this is why people keep on asking me questions about Maddies stature…not enough information is out there…or people are just stupid because I am SHORT!! But that is besides the point…for most of my life I have worked for a non-profit organization...and one of the first things I learned is to get out and SPEAK…to anyone you can…one person told me that if a stranger cannot stop at a local convenient store and ask and get directions to your local club…then you have not done your job…while watching Oprah the other day a women in a tragic situation of losing her parents is now taking care of her siblings…a couple of them were born with Downs Syndrome…she said something’s that would scare a pregnant women sitting on the couch having a child with Down Syndrome…she said that a child with Down Syndrome cannot understand what we understand…they can not process it…this hit me…because people with Down Syndrome…can understand, can think, can process…remember it is just different…but there is no reason we should treat a person with Down Syndrome different…I think she or even Oprah would have known better…if only we had more information out there…I am a newbie to having a child with Down Syndrome…but I have realized fast that people want to understand Maddox…they want to know what makes her tick…they want to now her difference and her similarities…so I think that it is a great opportunity to show and teach people…how unique she is and how similar she is to there child…I am stumbling through this process…but I know if we can get more correct information out to people…that women sitting on the couch pregnant with a person with Down Syndrome will not be as scared…as what life has to hold for them and there family…I fully expect my Maddox to sit, walk, talk, play independently, parallel play, eat independently, run, jump, go to school, make friends, laugh, love, get a job, DRIVE a car, and live on her own if she chooses…I can even dream that maybe just maybe she will choose to marry who she loves….Wow she sounds just like your “Normal” child…information awareness ROCKS!

Saturday, October 10, 2009

Easy going FREAK!

These days I freak out…I am a high strung person to begin with…but anything can send me over the edge…I remember having to get a glucose test to see if I was diabetic…a routine test…sent me into a panic…I kept putting it off…and not being able to sleep…I am never sure how my freak outs will manifest…after I got so many diagnosis and unknowns…I dreaded anything that I did not plan for…you would think I would be able to just go with the flow…I keep trying to talk myself in to going with the flow…you know being easy going…but it has not worked yet…this week we were going to be pro active and get the flu shot…so we got it…Chad trying to settle me…told me that it only takes 24 hrs to become effective…but then I found out it taken 7 to 10 days to take effect…GREAT!! then of course one of the kids I take care of came down with the flu…probably the swine flu --H1N1…I FREAKED!! I frantically cleaned everything twice…and recalled every step that little person took…I cannot get that voice out of my head…that this is going to be bad for Maddox…what will I do with Max if Maddie gets sick and will we have to go to Denver…there is no way that Chad can miss anymore school…you would think we would be able to treat Maddox here in our home town…but they do not have a NICU…they do not have specialist to treat her…I will not even let them draw her blood…in fear they will blow her small veins…running through my mind…at 3 am is everything I need to grab before we go to the ER…Maddies heart specialists and surgeon cards…her discharge papers with her diagnosis’s…so if the doctor we see has a god complex we can bring them down to reality…should I drive to Denver to the ER or just down the street…sometimes I think we need to relocate to Denver…where Maddox can have the best doctors…and the chance to meet and play with other Down Syndrome children…I know that is dramatic…but with Maddie everything seems to be unknown and dramatic…what I thought was a healthy baby became…a baby with Down Syndrome...heart defect…TEF/EA….and brown hair…random I know…but I always thought my daughter would be a blondie…but for today she has a stuffy nose but no fever…please please no flu…no freakin flu…

It is snowing here! Maximus thinks it is Christmas time….and is enjoying making yellow snow! Maddox is loving raspberries and sticking her tongue out and spitting…maybe I should worry less and enjoy this time more…but that would be easy going!

Sunday, October 4, 2009

To Know...90%

The other day I was reading a blog and they were discussing the 90% rate of terminating babies that will be born with Down Syndrome…it automatically took me back to the day of having the “no bubble” ultra sound…I remember lying on the table and my doctor talking to herself and saying TEF/EA and Down Syndrome…I knew then that my baby had Down Syndrome…I just knew…I went and had a amino synthesis…and it came back that my baby was chromosomally enhanced…with that the doctor said you can terminate the pregnancy and we can get that set up for you…I recall saying “no no I will not do that….I cant talk about that right now”…but the truth is I thought about it…I was scared and I did not know what to do…I remember calling my brother and asking him what to do…he said he could not answer that…Chad said the same thing…he was excited from the beginning about having a Down Syndrome child…but I do remember waking up one morning and saying to Chad…I want to have this baby…and we will be ok…I remember seeing the relief on his face and him saying …”I thought we were headed for an abortion”…I also remember reading this statistic and it making me sick….if you think of this and look around at people in our lives…this is a dirty little secret…one of my friends said that she could not go through with having a child with Down Syndrome…that is ignorance…I know that I complain a lot….I know that I have struggled with this….but I just needed to be educated on Down Syndrome….that Maddox is more like Maximus…Maddox is “normal”….she is happy, content, she yells out to be picked up and cuddled, she laughs and giggles, she loves to sit at the kitchen table with us…she just part of our family…someone said Down Syndrome will be the least of the interesting characteristics of your child…and that has rung true…Maddox is a human being….when you look at this…it really is about being self centered and selfish…Maddox did not and does not deserve to have this stigma…she deserves the world…and we plan on giving it her…she is our ROCKSTAR!

On a side note…to know or not to know…I told the doctor I wish I did not know…she said you will be glad you know soon…she was right…this allowed me to make choices…the choice to have her…the choice to learn and educate ourselves…the choice to call for help…Maddox has had therapy since she was born…on Tuesday her Kelly (OT) said this is our pace setter!

Thursday, October 1, 2009

My "Normal"

Today I found my “normal”…I have been struggling with not feeling like myself…today making breakfast for a little guy that I have taking care of since he was 1 month old…now 2 years old…and I love him dearly...I was singing a song on the radio…I looked over to him…he closed his eyes and he began swaying to the rhythm of the music…I began swaying and then we began to dance…then we began to laugh…then Maximus joined in…then we chased…and then we played hide and go seek…then we made forts and tunnels…then we sipped hot chocolate with yucky charms marshmallows…then my “normal” appeared and I liked it…I really liked it…here is my smile…and with that Maddox found Elmo…tickle me Elmo…it made her giggle and wiggle…and when I put her down she rolled to Elmo and knocked Elmo down…and ate Elmo…Maddox found Elmo…I found my smile…Maximus still has not found the potty and G. found my “normal”…thank you!