princess what...

Dear Maddie,


You are a princess…born from a queen! we do not SPIT…we just don’t… we do not think it is funny and we certainly do not play in it…we do not spit from the chair…we do not spit in others hair…we do not spit here or there…we do not spit anywhere!

because you are a princess…

when others in the room pass gas…we do not laugh! and as for you…we do not hold our breath till a FART comes out…then laugh and giggle like there is no tomorrow!

because you are a princess…

I get you like to TALK all day and night…in your sleep and when you eat…but mommy needs to hear the voices in her head…so please please be quiet and go to bed…

Love Mom

eating :) kinda

I can self feed! Cheetos only PLEASE...

Cheetos n water! my FaVoRIte...

I will do it...no spoon...thanks!

Ok I am done...ready to PLAY!

 

 

Ok as you can see we have some MAJOR work to do! Maddie can only eat soft cheerio size or smaller foods...so yesterday she tried hot dog and pizza...SHE LOVED it...Maddie is eating very small pieces of real chicken non pureed! Maddie is making some major steps with food...such a big girl she is!!

the fear of walmart...

you need to stop living in fear…I was told this the other day…I get the meaning of this comment and I get that the person cares about us and wants the best…but I think that statement is easily said when you have not lived in others shoes…and a person that does not and cannot give up to a superior entity…I walk in these uggs when it is rainy, snowy, sunny and peaceful…so last night strolling through walmart I stopped…there he was…Mickie…I know this because I texted a friend that works with him…there he was shopping with an assistant…with his calculator…and they were discussing how much milk Mickie should buy…Vins the assistant he was patient, kind and not waivered at all at the many people staring at him and Mickie…I was starring because that is what I do…I stock people with Down Syndrome…I do… I follow them…but I still cannot speak to them…anyway…Mickie wanted 2 gallons of milk…and Vins commented that he did not use all his milk last time and maybe he should buy a gallon and ½ instead…Mickie was not wavering on this topic and soon just decided to move on…what I observed from this encounter…Mickie is normal…he wants it his way…and who does not…Mickie was frustrated that Vins was trying to talk him out of something…and who does not get frustrated when you have written down one thing and someone is trying to talk you out of it…and the other thing…Mickie had a great smile…as for the gawkers…not encouraged by this…it pissed me off…why do people have to stare, lean over and comment to the person they are with…Mickie has a job and so did Vins…and they were taking care of business…I was staring because I have to…I have a little girl at home that needs me to be ok with others helping her…with someday letting her go to live on her own if she wishes…then I think will she live on her own…or will she want us to help her or will she want Max…or will I teach her these life skills before she is 20+ years old…I cried last night…again in walmart…I cry a lot in walmart…but no one seems to notice me when this happens…they only stare if you have Down Syndrome…I am just saying…lots of emotions stir up when I have an encounter with someone with Down Syndrome…mostly because I want to talk with them…I want to say hi and thank you and for some strange reason I want them to give me a hug and say it is ok…and I know that is not there job to console me…they are usually younger then me for goodness sake…but still I want the reassurance…from them…I know weird…I do live in fear…I am in fear my baby girl will get sick and/or die…I am fear she will not be loved by others…and I am in fear she will be sad when people stare….I am in fear she will be hurt by ignorance…and I am in fear that Chad, Max and I will die and no one will be here to protect her…so fear is always lurking…so last night I kissed my Maddie with tongue and she giggled…and reflecting back a typical experience at walmart…

dont mess with me!

this to shall pass....

to say I was not a tad bit taken back…would be a lie…and to say that I am not sad…would also be a lie…I am not jealous and I am not envious…because my Maddie has a personality that is non stop fun, happiness, and smiles…so I guess that will trump the fact that she does not talk with any clarity or any real sense…she talks to me with a lot of attitude and pitch and I like to THINK that I know what she is saying…but clearly I do not…so today when the little guy I take care of that is 9 months almost 10 months old started talking with clarity and understanding of the items he was looking at…I was taken back and sad…but then Maddie came crawling out with a mouth full of toilet paper and a honey jar and I knew that we would just have to get through this phase to…I am at calm with the fact Maddie is not walking and I know as soon as she does…no one will ask when she took those first steps….and as she begins to babble/talk and as soon as she gets some words under her belt I hope it will also be a memory…amazing as it may be…I do not remember very well how hard we had to work for her to hold a spoon…I do not remember how hard we worked for her to sit or crawl…but I know it took awhile and some tears…so I know this will also pass….Chad said something very nice and comforting the other night…he said with Max we rushed…we rushed everything…and now he is 5 years old and wants to be 6…he is calling 911 at not so appropriate times and he is going to all day kindergarten in a few months…so Chad said with Maddie he has enjoyed every moment of her being in this infant like stage…I agree to a point…I have not enjoyed myself as much as Chad…he has seen Maddie as a true love and pinnacle of his life…I have seen Maddie as an “oh my gosh” for most of her 2 short years…but slowly I am coming around and enjoying her more and more…today we sat and cuddled…she sucked her thumb and played with my hair…and I felt her heart beat…and I loved that she is mine…

very nice...

somedays I am overwhelmed by how far my Maddie has come...she went from slim hope...to conquering our world....Maddie is 2 years old in 2 months...

Maddie days old...after surgery...and many tubes removed

home and so sweet

starting to be mobile

beginning to sit up

sitting STRAIGHT up

climbing and sitting...Maddie wins!

and now we look forward to many more things...but most of all being FULLY mobile...walking, talking, and a autonomous Maddie...

perfection all wrapped up...

Today I was inspected by the health department…they do it every year unannounced…it is good…I am taking care of other peoples kiddos…so the lady comes in and is trying to place where she knows me and then asks who was just here…not sure why that was her business…but I will give a little…I tell her it was Maddie’s OT…she looks at Maddie for a while and then says…”ooh I see it now”…who says that? I wanted to say what do you see? do you see a beautiful human…do you see a person that is going to change the world? do you see a healthy inquisitive child…what is it that  people see when they see my Maddie? do they see perfection wrapped in a little package… I am not sure what they can see by looking at my child a presumed stereo type or ignorance that has been pasted down from generations…I am sure everyone says…oh my goodness that little human is the cutest, happiest, loving child I have ever laid eyes on…I am just waiting for someone to thank me for letting them be in the presence of flawlessness…last year after this type of comment I would have cried, texted Chad, and blogged…this year I giggled…I thought how I feel sorry for people that just do not get it…people who think they know…people who think they are smart and they just look like fools…fools for not thinking before they speak….my life has different meaning then it did a couple of years ago…Maddie has shown me that the house I live in and the car I drive is not important…that money in the bank and lots of vacations can not give me anything…so when you see Maddie just think to yourself…how lucky those parents are…and just one time I wish someone would say wow you and Chad did good! Y’all sure make some magnificent kiddos!

Maddie's small stuff...

Maddie on STRIKE!

Maddie is 21 months today! I know huge...at 21 months she will self feed two things...Cheetos's and peanut butter...and that is it...she does not dip the spoon in the peanut butter...just holds the spoon with peanut butter placed on the spoon...but for my Maddie this is a huge thing...I am so proud of her how she holds her straw cup and can self drink...Maddie is not walking...but she is using her walker more and more...she hates shoes and will not walk with shoes on...this is where I struggle...I do not push Maddie...I do not make her do things that she does not want to....Maddie tends to go on sitting strikes...and will not stand for anything...when you go to pick her up she stays in the sitting position....she also likes to go on eating strikes...she loves not opening her mouth and not eating until I find the special something that she will open her mouth for...she just turns away from me and sucks her thumb...in great annoyance with me....I am not sure why she hates to eat...I do not know if it is uncomfortable...I do not know if the Raglan is working...Maddie will be 2 years old soon...and she may be walking by then...but I know she will not be eating by then...birthdays are hard for me...hard to say my Maddie is almost 2 years old...of course I love the party and the celebration...but then there is a reality to the birthday...in the back of my head I know what she should be doing...but she is not...and she will not catch up...she will just get it when she gets it....Maddie can communicate with us...and her OT's but not with others...there is no way someone out of the blue could understand her signing or her verbiage...on the other hand I am so proud of my little girl...she is amazing how she can self play...she plays with cars, dolls, balls, she role plays, and she loves to dance and laugh...Maddie is so much more then a 2 year old...a number...Maddie smiles and sings to wake up and she giggles when she goes to sleep...Maddie is so mature in so many areas...but those are the areas that are not measured in an IEP....Maddie's ability to problem solve is crazy good...she does not give up...and she knows how to ask for help...Maddie may not walk, talk or eat...but she can get where she needs and wants to go, she can point, look and grunt to communicate and she will always eat ice cream and chocolate...

Brains...

I was watching this brain stuff on PBS science NOVA now…it is on Wednesday nights and it is interesting…they were talking about animals brains and how smart they are…they said a dogs brain can be as smart as a 5 or 6 year old child…I thought it was interesting how they worked with the dogs, birds, and dolphins…over and over repetitions of different skills…like remembering the stuffed animal and bringing it to you…or the bird that can tell you how many sides are on a triangle and the dolphin that looks at a picture and then complies with the command…at one point I asked Chad…Maddie will be smarter then those animals right? I know insensitive --I know bad Mom…but I worry about it…and I worry ...there is no such thing as a high functioning person with Down Syndrome…you either have a extra chromosome or you don’t! and I get that even people that are not T21 have different capabilities….but with Maddie I think I need to keep doing things over and over again…and Maddie gives me a look as if she will not tell me where her eyes are or her nose or feet…because I have told you a 100 times…but I want her to do it…just one more time! I want her to show me that she remembers things…that she knows her body parts-- her signs, etc….but she is a stubborn little girl that will show you once and then she is done with that game…

so when I saw the video of the teacher born with Down Syndrome…I got scared…I got scared to watch…I watched first with the sound off…to see if I could make it through the video…I did and I could not wait to watch with sound…I noticed how amazing she is…how “normal” she is…how her mannerisms are nice...how she smiled…she has a great smile…how she spoke…she is clear and upbeat…and she is real…and the kids liked her…Chad and I watched this video together…and he shared it with his colleagues…I joked with him…when he becomes a principal he can hire Maddie as one of his teachers! this was a huge thing for me…to watch…to hope…I want Maddie to have all the opportunities she can dream…I expect Maddie to dream big…please watch the video if you have not seen it…you will come away with a new understanding of what my Maddie can do…if given the opportunity…

Balls...

Ssshhh! I am hiding...

Max found me!

keeping up...

I say to myself…that I am good…I am alright…I am pulling myself through…for the most part I am positive and upbeat…and I do not burst into tears anymore at different things that I see as obstacles or hardships…most of the time those obstacles and hardships are my insecurities of our future…and they moments not days of pity...so this weekend I struggled a bit…but I did not lose my cool…me and the kiddos went swimming this weekend...I was enjoying my time with my kids…and it seems that when Maddie is around I always have another mother lurking and following me and telling me how great Maddie is…with a head slightly cocked and an annoying I understand look…I know I should be nice and grateful…but those women always turn into lots of questions and pointless small talk…as I was trying to get away from her…I saw a girl…and it stopped me dead in my tracks…I did not know what to do…look away…or cry…my stomach was nervous and I was riddled with oh no…but I just stood there in the pool holding Maddie…tight…kissing her and thinking you are ok…you are ok…do not cry…do not freak out…yes my biggest fear a teenager with Down Syndrome had entered the pool…this is my fear…I am not ready to see Maddie as older…I am not ready to see what my future holds or what Maddie "may" be like when she is that age…I just shook my head and thought I need to get over this…I need to face this and stop thinking of all the stereo types in my head…I made myself continue with my Maddie and just revel in her…and who she is now…I did not cry…I did not freak…I just mothered my children…then the age old question…is she walking? NO NO NO NO NO! she is not walking she is cruising and that is AWESOME!! Is she eating “normal”? NO NO NO NO NO! she is not…she is still on #2 Gerber foods…aka- pureed food that she HATES! But thank you so much for asking…her response…well if it makes you feel better my daughter did not eat solids until she was 2 ½ …no it does not make me feel better! It makes think it must of sucked for you…and it sucks for Maddie…because she wants a juicy steak!

Luck...

Setsubun…it is part of the Lunar New Year celebration in Japan…we have friends that are from Japan and let us celebrate the holiday with them…it was AMAZING! as with many new year traditions the customs preformed are to assure good luck for the coming year while chasing away the bad luck of last year… We threw roasted soy beans while saying “oni wa so to, fu ku wa uchi”, translated to “get out demons, come in happiness”… We threw the beans out the front door, around the house and at Doug and Chad wearing a oni, demon, demon masks. Max and Maddie joined in on wearing the masks and threw the beans at the demons and repeating the saying…we also participated in another tradition by eating a special sushi roll while facing in the lucky direction based on the year…It is said that to truly get the “luck” a person has to eat the whole roll without saying a word…so none of us said a word…WOW what a year will do for a person…the depression is gone…the unnecessary worry and sadness has all but disappeared…so last night I could use my wishes of good luck for others and it felt good…I also love exploring new cultures…I see Down Syndrome as a new culture…a new experience that I need to adapt to…a couple of years ago when my Dad and I traveled to Japan to see my Brother…it was scary…the language barrier, the food barrier, how there is people everywhere and they do not look like me…I even made a horrible comment to my brother that they all look alike…he said no they don’t! he said they are beautiful and stop stereo typing…just watch them and you will see…in the couple weeks I was there…I saw the beauty in the people…I saw how they very much look different from each other…and I was completely wrong…just like when we found out Maddie was going to have an extra chromosome…I said they all look alike…referring to people with Down Syndrome…WELL WE KNOW THAT IS NOT TRUE!!...Maddie truly looks just like Max and a member of our family…last night we sat on zabutons (pillows) around a small table and enjoyed friends, food, and a bright New Year!

I get it...

So understanding what I can handle and what I cannot…has been a struggle…in my daycare I have kiddos much older then Maddie…and then a 9 month old…this has been a hard thing for me to handle…watching daily how much Maddie is falling behind the “norm”…on the other hand it has made me appreciate her effort, her hard work, her positive attitude…I am never really looking to add anyone to my daycare…I always have had a waiting list and I never seem to lose clients…so when someone calls to get into my program I usually say no…and leave it at that…of course this one came with a sad story and I thought on it for a few days…I realized I am not ready…I am not ready to have the same age child in my care as Maddie…I do not want to see day in and day out how much Maddie is not doing…I want to just celebrate what she is doing…I know she will someday walk, talk, go to school…but until those days we have to look forward to the huge milestones that lye ahead…this weekend I saw a little girl the same age as Maddie…what amazed me more then anything is how small Maddie is…how petite she is…I thought she was such a big girl and tall…but she is a peanut and that is so ok…I was not upset or envious…I was relieved that Maddie is alive and well…that she has a bright future that no one can predict…not even this scared Mama…


Yesterday a great young lady asked me what is the meaning behind my blogs? Simply put…it is my therapy and my friend…it is the only place that I am not judged and made to feel in fearer of my feelings and struggles of motherhood…in the “real” world I get looks of “get over it” when I am talking with someone about Maddie…so I have stopped talking about Maddie in the “real” world…I just say “Maddie is great”…that is what I say to everything…even when she is sick…or when she is struggling…she is simply “great”…I am a talker by nature…I used to enjoy the interaction and the feedback…but I no longer enjoy either face to face…so what is the meaning behind my blogs…they are just raw, true, human emotion…