Wednesday, August 31, 2011

2nd thoughts...

this is really silly of me...and I am not sure why I am feeling such a hinker for being pregnant...just being pregnant with no premonitions...I loved being pregnant...I loved to feel my baby move...I always had such a strong connection with my babies...I will never forget lying on the floor taking a nap and feeling a gush of strange energy and what seemed to me in hind sight when Maddie became Maddie...it was a strange feeling...it was a strange painful feeling I cannot explain well...and I remember smiling and patting my tummy...being so excited to be pregnant again...I knew I was pregnant before I took the 30 home pregnancy tests...with Max and Maddie I was never sick or tired...then at 5 months pregnant...I had the no bubble ultra sound with Maddie...and from that day on I knew...something was up...one month later it was confirmed that my little girl was going to be born enhanced...and then I hated my pregnancy...I hated being pregnant....I did not want the baby...I stopped having anything to do with that pregnancy...of course Maddie was kicking me and making sure I did not forget so fast...and they were forceful kicks...with so much fluid -my baby could roll...then the problems began with my pregnancy...and I could no longer ignore that I was pregnant...and lying in the hospital yelling at a nurse to stop hurting me...and I said to her straight in the eye...you make me go into preterm labor my baby will die...you get it...and she left the room...and they understood that in my home town they could not treat me...I went home on medication and was drained of amniotic fluid three times in Denver during my pregnancy...and with each 4-D ultra sound and drain...I loved my little girl a little more...I became more scared of her...and all the unknowns...but I loved her and I was willing and able to be her mom...but going through a hard diagnosis, grieving for the daughter I thought I would never have...I did not love my pregnancy with Maddie...and I want to love being pregnant again...I want to read an email of what my baby is growing again...totally selfish on my part...but this is a fleeting want....I cannot have anymore babies...I made a decision in the hardest moments of my life...and I got "fixed"...I was 100% sure I did not want anymore kids...Chad would ask me regularly are you sure you want to do this...referring to the getting my tubes tied...and I would enthusiastically say yes...I even said to the Doctor that it needed to take...because I could not do this again...that I was emotionally spent...today I am not so sure I do not want more kids...I would love to feel a baby kick again...and not be afraid of that kick...I would love to feel that feeling of meeting my baby for the first time again...and not being so scared because she is frothing from the mouth and knowing that she is having surgery in a few short hours...I would love to hold my baby for as long as I wanted to without someone telling me I am over stressing my baby...I would love to have a home birth or an orgasmic birth...something different...I know totally selfish on my part...and I am not sure my already stretched tummy could take another...so for now I will live vicariously through friends that are having tummies full of bundles of joy...

Monday, August 29, 2011

i'm outta here!

Maddie's daily attempted escape...this time decided to see where she would go and what she would find...
see Mom! I am off to the park...

I am so stink'n fast...

Yeah I am BIG!

down I go...

I love this!

refreshing!

look at the cute girl in the puddle!

I like to lick puddles...dont u!

stomp...stomp

Puddle PRINCESS!

Sunday, August 28, 2011

Maddie's Top 21...

Maddie's top 21 loves of her life...at the ripe age of 2...but we know to be true!
1. PUDDLES...I have dubbed her the puddle princess
2. anything she can eat with a spoon or silver fork...preferably something that can dribble down the face and onto the belly...
3. her brother...where he goes...she goes...she will follow him to the end of the earth and back for good measure...
4. my drink...we share coffee every morning...I would be so against this if she was my first child...but she is not...so we sip it together every morning...and I love to watch her delighted facial expressions...totally selfish on my part...
5. going anywhere...Maddie loves her shoes...she will get them for you and take your hand to somewhere...she loves the wonderment of what is next!
6. her pink haired raggedy doll...she has slept with this doll since birth...I put it in her crib and she loves to eat the dolls hair...cuddle it...and it is what she plays with when she is waking up to start her day...
7. toilets...so enthralled with why everyone sits on them...why she is always shooed away from them and how when she pulls the lever it make a great swish...obsessed with putting the lid down...and attending every encounter we have with the great white throne...
8. Baby Einstein Old McDonald...Maddie will sit in her seat watch this video from start to finish...dance, sing, smile and laugh with pure enjoyment...
9. holes...any hole to put her finger in...she will obsess over a hole...the texture, how deep...any size of the black unknown...
10. little people...she loves anyone her size...any person she can look eye to eye with...
11. talking...Maddie has something to say about everything...her brother gets in trouble...and he hears it from me...and then Maddie...with the same tone and finger wagging...
12. her teachers...Maddie awaits at the door for her teachers...she loves to learn...she loves to play...and is always wanting to do more for them...
13. sprinkler...she loves to run through the sprinkler...loves to drive her car through the sprinkler...and she loves to drink the water...
14. chase...if you are trying to get her...she is a giggling...a circles she will go...with a few falls...but she is eager to get up and go again...with a huge smile on her face...
15. the backpack...Maddie digs being taller then everyone...and keeping a close eye on us as we hike through the trails of Wyoming...
16. the front door...Maddie loves to go out that door...and just sit and look in the house...and giggle as if she has escaped that madness of our house...
17. stools...Maddie can climb and uses different sizes of stool to climb up to get onto things she not supposed to...now if she could learn to get down...
18. tongue kisses...the best french kisser I know...with sloppy spit and lots of smiles
19. books...Maddie loves to have books read to her...and she loves to read to herself and others...her favorite of all time book is Barnyard Banter...
20. balls...she will heard them, throw them...and chase them...Maddie's new thing is to sit on everything...and balls is one of her favorite things to capture with her butt!
21. mornings...Maddie has started her day with a smile, giggle and singing as long as I can remember...Maddie approaches each day as if she has everything to learn and even more to experience...


Tuesday, August 23, 2011

look...

I really have not felt this good since before I had Maddie...or I suppose I should say before the diagnosis...this weekend was a all girls weekend...just me and Maddie...I thought I would go low key and just enjoy my Maddie...in this quiet time I get to reflect on how far we have come...we hiked the bridle trail which is about 5 miles up on the mountain...I truly found me there over the last couple of years...2.5 hours of complete silence will do a lot for sorting out life...we enjoyed a little Starbucks and each other...we went to bed early and woke up early...it is nice...I watched Maddie play and how her little imagination is evolving into such wonderment...she will play with her dolls...talk with them...put them to bed and tuck them in...when she feels like it she will open the patio screen door and go outside and drive her car...she has become such a real child...a child that is so "normal"...I wish I could have seen this before she was born and when she was a baby...I remember my brother commenting to me that he was worried that I was missing Maddie by all the grief I was feeling...I do not feel I missed anything...but I do admit I felt very isolated and scared when Maddie was younger...I got some really good advice the other day...that I need to take Maddie as many places as possible and let Maddie do the talking for me...when Maddie is present there really is nothing for me to say or do...she oooses love, kindness, and what is truly right in the world...yesterday I uttered the words..."not everyone gets to be as lucky as us to be in the presence of Maddie and greatness" I truly feel this way...I did not feel this way years ago...but I have come full circle...I think that is why it hurts so much when someone does not see Maddie for her...it has been commented to me several times in the last couple of days that Maddie does not look like she "has" Down Syndrome...when Maddie was a baby this would have been a compliment...today it makes me confused on the emphasis we/I put on outer appearance...as a women of course I think about looks from time to time...I have used my looks to get out of speeding tickets and get better prices on things...and so on...but I am not really interested in what people think of me...I know who I am and what I am...when Maddie entered the picture I was obsessed and ridiculous with wanting to disguise the Ds markers...I even checked into plastic surgery...pathetic really! but I had to go through the process...I have come to love my Maddie and her looks...Ds or not...she is the most beautiful person I know...and  I think as she gets older I will continue to see her for Maddie not anything else...

Saturday, August 20, 2011

outdoor scramble...

I love the pack!

I cheese the camera!

some river fun...

Max thinks this is a keeper!

Max thought it was a good idea!

Thursday, August 18, 2011

2 tails...

I have a in home daycare...many of the kiddos I have had in my care for 5+ years...one girl that has been with me for five years...sent me for a good loop...one of the kiddos commented on how the 1 year old could run and that Maddie who was two could not...I commented...that Maddie can run it is just different...she walks fast with straight legs and we call it Maddie's run...I left it at that...when the child tried to push that Maddie was really not running and why...out of the words of an 8 years old...Maddie "has" Down Syndrome...Max chimed in and said she was born "with" Down Syndrome...then the 8 year old proceeded to say...Maddie is going to run -she just needs more time...she just learns things slower...wow if an 8 year old can get it...and say it...I melted...usually I would raise my brow at a the word "slow" but she was not meaning any harm...she was explaining it to a 6 year old and used the words that fit her development...when I think of sending Maddie into this world...I know there will be hard issues and mean people...but I think for the majority there will be nice...and kindness towards Maddie...I think people will see her for her...not for what she was born with...then adults speak..."glu-tard" that was what was said to me...of course it was that word with a ha ha after...I paused...I was speechless to say the least...it was what a women calls a friend that cannot eat gluten...so do I become that person...the person that calls someone out every time she is offended...or do I let it go...and when I let it go do I become that person that is not standing up for a word I am offended by...I just do not understand why a laugh goes with the word "tard"...I do not think I understand this line of thinking or bad judgment...

Tuesday, August 16, 2011

all that...

Miss independent…not sure why I was so hung up on the “what if” Maddie is not independent…because at the ripe age of 2 years old…there is no doubt Maddie will do what Maddie wants to do…when she wants to do it…I am saying good bye to the lovely little girl that was sweet, nice and snuggly and getting to know the rambunctious little girl that thinks NOTHING applies to her…"no” is a foreign word or she simply does not think it is in her best interest…Maddie is the kid that will do anything and everything for  a reaction…head first down the water side…ok…walking and not wanting to hold hands to be safe…not ok…climbing on the tables and counter tops and using stools and chairs and any means necessary to make sure she gets where she needs to go…because brother does it -it must be ok! Maddie likes to turn away when trying to explain why we do not tackle, hit, take, or push…she does not like to be told what to do or even a suggestion of how to be nice…Maddie really likes the idea that she is the ruler of the house…when she is hurt every family member must stop and pay tribute to the hurt and brother and daddy must kiss it…mommy is there to hold her and take her where she grunts, screams, and points to…but all I can do is love, laugh and think wow am I lucky to have a little girl with this much spunk and this much life in her…Maddie loves to experience everything and be left out of nothing…the other day at putt putt golf she had her own golf ball and putter and tried her best on every hole…I have never met another child that was so ready to learn life…
this is what happens when Maddie does NOT get her way...

yep I am BIG

this is how you do it brother


Monday, August 15, 2011

sprinkler fun...

Loving summer! Go Maddie and Maximus!

Friday, August 12, 2011

surprise!! 2 holes...

Understanding a diagnosis…is really a small small part of life with a special needs child…when I received the diagnosis that our baby girl was going to be born with Trisomy 21…I thought that was it…then the excessive doctor visits began and they began to tell us common “defects”, common issues being born with an extra chromosome…I understood what they were saying and I understood the percentages and the risks involved with having a child with Down Syndrome…but then reality hits…and the baby is born…there is no understanding…when Maddie had her first surgery at 4 hours old…I was stoned…and I liked that I was high…I liked that the drugs were not completely out of my body from her delivery…I could not feel, I could not think…I was not ready to…since then and many surgeries later I still wish I could get to the state of numbness…because I am head over heels in love with Maddie…and to see her in any amount of pain or discomfort makes me want to blow…on Monday I received the phone call that Maddie would have heart surgery….on Wednesday…I found my numbness…I found my robo-mom…and just did what I needed to do to prepare for her upcoming surgery…I was not happy, I was in the moment…I was scared…no amount of comfort can take away the feeling of complete loss of control I feel when Maddie has surgery…so off we went to Denver for her 2nd surgery in a month…this time for her heart…so I am told to be comforted by the fact it was orthroscopic heart surgery...ok I am not…I am the mother of a child that is having heart surgery…it is very hard to sit in silence with that running through your head….and it really is not that comforting…it is still heart surgery…it is still anesthesia…and there is still risk…she surprised us and had TWO 8 mm holes in her heart…it was the reason for her fatigue, stunted growth and excessive sweating…and here I am fumbling on how to mentally survive Maddie…I am not sure there is a “right” way…I am not sure there is a graceful way…I am numb…and I am scared that this is our “normal” surgeries…hospitals…nurses knowing us by name…xray personal remembering our faces…and seeing our specialist of doctors in the waiting room coming over to see if everything is ok…then the news I was not expecting…during heart surgery a camera was put down her esophagus…she is stricturing again…we will have another surgery in the upcoming months…robo-mom will come back and numbness will probably not lift…I am scared of being Maddie’s mom…not because of her being born with Down Syndrome…I am scared of her health issues that has come with the extras….that no one can understand or explain to you before you have a child like Maddie...I love her so much it hurts and I can not protect her…I cannot stop this angry esophagus…I am spent emotionally…I am relieved I can begin to check her heart issues off the list…but the mind set I have to have to survive motherhood...is something I am struggling with…how do I stay calm…how do I stay grounded…how do I stay out of the health drama…how do I stay positive and strong…how do I survive the complete loss of control…I guess time will tell…

Wednesday, August 3, 2011

According to Maddie


Life according to Maddie is very interesting, fun, sassy, unpredictable, and sometimes stressful…but so enjoyable…with Maddie everything is sweeter and a road that I have never experienced…she is just different in a good way…how she saunters through her life with a smile and a kissa…her kisses are with her neck reaching out as far as she can- tilted up head and looking for a meeting of lips preferably her brothers or dads…according to Maddie anything and everything can be fixed with a head nod smile and a shoulder shrug…she is very independent she can apply her own lotion, sunscreen and do her hair…she is a master with a hairbrush…Maddie favorite accessory besides her tooth is a purse filled with her favorite things for that moment…according to Maddie the perfect diet is Greek Yogurt and cheetos…everything else is really unnecessary…Maddie has let me know that it is her job to empty the dishwasher…she is becoming better and better at it…as we move to only plastic items in our home…according to Maddie she owns her brother and all of his time…in her world he will play or better said entertain her for hours until she is ready for a happy nappy…Maddie loves to get dressed up and show off…she is all girl and so my daughter- the daughter I thought I did not get…but surprise; she is just what I needed…wanted… just did not know it…according to Maddie signing sorry is very important and needed with most encounters with anyone…Maddie is a tad on the aggressive side….Maddie no longer believes a  high chair or car seat is necessary she thinks she is big enough to sit on a stool for dinner and help drive the car…Maddie understands that if the shoes are on and she has your hand that a walk to the park is in order...even if it is dark, raining, or just to hot....according to Maddie life does not have to be as difficult as her mother likes to make it…just keep smiling and everything else will fall into place…