Sunday, October 31, 2010

Bounce

coming back from having a child is and process…not only is it external but internal…with Max I was a first time mom and dove head first into it…I loved being a mom…and we never left him not once with a babysitter until Maddie was born…yes that is crazy to look back on that time…we included Max in everything we did…if he could not be a part of it we simply did not go…I am not saying this is for everyone…but we have no family around to help…we have close friends…but I hate to inconvenience them! so coming back from having Maddie…has been different…it has had its ups and downs…since we have had Maddie we have had to ask for help from our friends to watch Max while we do doctors appointments for Maddie…he does not mind and seems to enjoys it…he even said to me while I was getting really nervous to leave him…”don’t worry mommy you will be back to get me”…so a few weeks ago Chad asked me on a date! and I said yes…this is huge and it was a great time…we got a babysitter…a young women that I love and that I have known for many years…she is a manager for a special needs residential home…and she has a gift with kiddos…with that date I realized that I have pushed many people away…friends, family and possible friends…I do this because I am not sure of who I am….I cannot guarantee my mood or my reactions….I cannot guarantee that I can lift friends up if needed…so it is easier to keep my circle very small and predominately virtual….I am proud of myself for starting to care about me again…I have been working out consistently since I had Maddie…and I have started get my hair done…and tan a couple times a week…I know it is not healthy…but it makes me feel good…and I need that more then anything right know…I want to bounce back to the person I was…I want to put on my blonde attitude and pretend not to notice or care…I want to giggle…I want to shop…and not worry about the next doctor bill…I am not sure if this has to do with being a mom or being in my mid 30’s…or both…I have also made an effort to smile at people I do not know…bouncing back from having children…special needs or not…changes you…I can say I am different then I was 5 years ago…I am less selfish and more at peace…

Saturday, October 30, 2010

fingers n toes

I remember there was a time that I would say… I just hope my baby has 10 fingers, 10 toes and healthy…so when Max was born…Chad said he counted them and he was perfect…I was so thankful…that Max was perfect and healthy…he of course grew into a 5 year old…perfect is gone! when Maddie was in her early stages of my womb…I remember saying that again…I will just be thankful if my baby has 10 fingers, 10 toes and healthy….then the news came that Maddie was going to be born with an extra chromosome and not so healthy…that saying faded and I did not repeat it again…it was no longer important…and it sounded just plain silly…what became important…was that she would live…not necessarily healthy…just live…to say I was naïve is a complete understatement…so today when I was reading and a person stated that they were thankful that there child was going to be born with NO chromosomal abnormalities…I was sad…I was pissed…I was because I think why are they so thankful not to have a Maddie? So I have to go back to before I had Maddie…and how sad I was…sad because I did not know better…sad because I was so short minded…I get that people will always hope and wish for a perfect healthy baby…it is normal…so why is it that I am questioned about my sadness, my stress level that encompasses an chromosomal abnormality…I am told to be thankful…I am suppose to be positive…that I am not suppose to question “why me”…but society is thankful when the chromosomal abnormality does not happen in there life….of course we all want the ideal life and perfect children…good news is I still have a ideal life with great children…I am also happy to report that Maddie has 10 pudgy fingers…8 toes n 2 webbed toes so that equals 10…and she is relatively healthy…

Friday, October 29, 2010

in the eyes...

Two 6th grade girls came to my home selling goodies for school…I was holding Maddie when I opened the door…they commented on how cute Maddie was…then one asked “is your baby Chinese” I was not offend and I thought it was kind of funny…I responded “no Maddie was born with Down Syndrome and one of the features is almond shaped eyes with a slight slant” one responded with a nice look and a smile… “so she is a special baby” I responded ‘I like to think so” …a couple minutes later a little boy came popping in from my childcare and started saying hi to the girls…the one girl asked “is he a special child” I responded “no he is Japanese!” I liked this conversation…and I liked it because it is how everyone should respond to the term Down Syndrome…it is not an ugly term or a I am sorry term…it is a term that should be special because there are so few babies like ours…it also made me think that if inclusion is working…I think it is working…I think this because when a child or a teen asks about Maddie…it never has a  negative after tone it is simply not a big deal…my generation it is a big deal…Maddie was the first person with Down Syndrome I met or touched…maybe just maybe our babies will stop being terminated and start being accepted…92% are terminated and 1 n 733 have a little extra…  

Wednesday, October 27, 2010

Selfish Grieving...

I never in my wildest dreams ever thought I would have to defend my feelings for my own daughter…I never thought that after I may say or write something like... I am confused, conflicted or even angry about Maddie being born with Down Syndrome…that the very next sentence to follow has to be “I love her”…let me say that I can be angry that I did not get the daughter I always dreamed of…and still love the daughter I received whole heartily…my love for Maddie does not waiver because she was born with special needs…I did grieve for the loss of the daughter I thought I was going to have…I grieved at the notion that our life would be easy and be without so much worry…I grieved for my naïve outlook on life and heartbreak…I grieved for the loss of one child…and danced for the life of the other…but I am always taken back when people mistake my heartache for me not loving my daughter…

Tuesday, October 26, 2010

not my Maddie...

There are a few things that Maddie has figured out! she knows when she is hungry to go and scream at me to feed her under her monkey high chair…she knows that EVERYTHING must go in the toilet…she knows if she screams enough Max will come get her…she knows that the computer keyboard is for pounding…the phone is for talking…the clicker for changing the TV channels…and the refrigerator is for climbing…and last but not least to get out of trouble just flash a sweet smile and giggle and it gets mommy every time!...I have been having to discipline Maddie...she is naughty and she does know better then to hit an cry just to cry…she knows that all she needs to do is ask in her cute Maddie way and I will give her the world… it is hard to discipline her….I am conflicted that I may hurt her ego…that I may hurt her development…that I am OVER sensitive because I do not want “my stereotypes” to hurt her…that she will not understand personal space or have to be the center of attention…all things I know to worry about another day…but when does that day come…and when is that day to late?

Monday, October 25, 2010

coming along...

On Saturday we attended a birthday party for one of Maximus's classmates…I was nervous to go…I was on a “Hi” basis with some of the moms…but not a first name basis…also I had to take Maddie with us…because Chad was hunting…I was nervous about the other mothers staring and or making comments…so we walked in and Max was off and joined in the festivities…me and Maddie sat at the table where a nice faced mom was sitting…we chit chatted and other mothers joined in…and we talked about where we were  sending our kiddos for kindergarten…then she said I am sure Maddie can join Max at “that” school…maybe you can use Maddie as a way in for Max! I then knew she knew Maddie was born with Down Syndrome…it is silly that I cannot just go with it…that I think I have to declare something…I did not declare anything…but I yelled it in my head a few times…anyway…we got to talking and she told me about her daughter that was in the NICU and then PICU for months and still has severe kidney issues…and has to travel and see specialists in Denver like we do…it was nice to relate to someone face to face…it was nice to have them understand the pure horror I feel giving my child to someone else to take care of…she just got it! I never did say the words ‘Down Syndrome” I am SOOO trying not to define Maddie as just that….I know she is more…this weekend we celebrated another milestone…Maddie took the phone and said “ha” with her hand lifting the phone to her ear! We are coming along me and Maddie!

Friday, October 22, 2010

Butterflies n Maddie...


Max luvs "tran-chillas"! Maddie not so much...


Maddie and Mommie...Maddie is GRUMPY!

REALLY Grumpy! Maddie is not a fan of spider webs!

Pretty...

look I am a butterfy!

Wednesday, October 20, 2010

Pumpkin PoWER...







Tuesday, October 19, 2010

messy Maddie


to much ice cream! time for a bath ;)

oOPs! I fell in brothers ice cream!


Monday, October 18, 2010

darn reflux...

"you are the mom...you call the shots"..."you are your child’s best advocate”…these statements do not ring true in this house…Maddie also has a dad and he also knows a thing or two…and then Maddie has her doctors…this is a hard post to write...I have rewritten it in my head a few times to say the least…on Friday we met with Maddie’s doctor…my mission was to take her off the Reglan…mission was not accomplished and will not be for awhile…Cha tells me we hired experts to tell us and help us care for our daughter…not to take there advice of those experts would be detrimental to Maddie’s health…the doctor simply said if we take Maddie off this medication…Maddie will have to have surgery again because of damage the acid reflux will cause her esophagus…at birth Maddie was put on Ranitidine to help with “possible” acid reflux and to protect the repair of her TEF/EA…the swallow study confirmed Maddie has “severe” acid reflux…when we saw her stomach not empting and her esophagus not contracting the Reglan was introduced…the risk of her not being on this medication far outweighs the possible side effects…the doctor came ready to have me understand that there are very few options for us…and she reminded me of fear mongering that happens with medications that are in litigation…I got the point and Maddie will remain on the medication until further notice…I came away reminded that being Maddie’s mom is different then being Max’s mom…that I am supported when it comes to Max…I am the expert…when it comes to Maddie…I am not…I am the one that gives her love and support…but I am not the one that makes the decisions…I am the one that follows through on the decisions that are made…
 

Sunday, October 17, 2010

Daisy Bandits...

Wednesday, October 13, 2010

just say no...

Why do I get so upset and nervous about doctors? Friday is Maddie’s checkup with her doctors…and I have been doing A LOT of lobbing to get Maddie off her most recent addition of medications…so I have my speech ready…and I have a power outfit…and I feel like I am presenting to my boss for a raise! But it is a doctor…a person that should be listening to me…not the other way around…I should not be upset about this…I should just be able to take Maddie off this medication…because I feel the risks out way the benefits…but really this is NOT the way it works…I am not the only advocate for my Maddie…that is what is different about raising my Maddie…everything and anything we do …is a group decision…with doctors, therapists and social workers…and believe me I am SO thankful to have the team I have for my girl…but this time I just want to say no…no to the Reglan…the research and studies I have read have say the longer a child is on it…more likely the side effects will occur…this medication is for short term usage…but that is not he impression I am getting from Maddie’s doctor…so I have been talking with Chad and he wants to keep my feelings out and only good hard data in! He is the scholar in the family! I just want to be honest…I cannot handle another diagnosis of this magnitude…these are the side effects and this medication that has a black box warning…Serious neurologic Reglan drug side effects in children include:
• Tardive dystonia
• cervical dystonia (torticollis)
• Parkinsonian symptoms
• Akathisia
• neuroleptic malignant syndrome
• tardive dyskinesia
So again would you give this to your child?…Maddie is still taking about an hour to eat and is still only eating between 2 to 3 containers of Gerber puree baby food…she intensely dislikes any cereal with her food…so this is where we are at…scared to say to much to the doctor...I do not want another swallow study….and REALLY do not want a higher dosage of this medication…so lets face it … Maddie is not starving…she does not have teeth…they kind of go with the whole eating food thing…I think!

Tuesday, October 12, 2010

it is a crawl...

Maddie has been frustrating me lately…she REFUSES to do a lot of things...she is very strong willed…and did I mention she yells at me for everything I do wrong! Yeah she does…anyway…she had been refusing to 4 point crawl…so I just stopped working with her on it…stopped…and then I knew the OT could tell I was not working very hard with her...then I felt bad...because of my frustration Maddie is the one who suffers and I do not think it is ok for the OT to do all the work…I know it is my job…therapy just becomes a lot sometimes…it is not the therapy it is the point Maddie just does not do things…everything has to be discussed and practiced…and practiced for months…then maybe if she feels like she will do it…so back to the 4 point crawling…last week she was rolling on her back, standing up, and sucking her thumb… I  knew then I needed to push her...so this week…it was a family thing Max, Chad and I worked with Maddie it took all three of us together…but she did it she did one 4 point crawl…it was so awesome…so today when her OT came she did it for her…it was great to see our hard work pay off…now I just need to get her to do it more consistent and for longer periods of time...she is just so stink’n fast army crawling…Maddie is very much her mothers daughter…we only do things when we say it is time...

Monday, October 11, 2010

just say NO to pity!

Empathy is one of my favorite emotions…it is one emotion that I did not always have…I remember the day I got it…felt it, and put it into motion…it was the day I start working with disadvantage youth…it was the day I realized the world was not a rosy place…like the one I had envisioned…the one I grew up with…I worked with kiddos at a Boys & Girls Club for over 10 years…they taught me that life is not fair…so when I went through the diagnosis of Maddie…I think I had empathy mastered…and when I searched for it in other people… I felt it was hard to find…the synonym for empathy…is pity…I got the “I am sorry”…”well you know that person down the road has a child that died”…that is not empathy folks…so during Down Syndrome awareness month…it is a good time to think…do I have empathy? Or do I have the case of there is always someone worse off then you are…cause that really does not make anyone feel better…and really I am happy with Maddie…I like her extra chromosome and I am not really struggling with Down Syndrome…like I used to…I am over it…she is my daughter…if you do not like her enhancement or it frightens you…ok…face it and start asking questions so we can fix your false stereotypes…or just really stop and look at Maddie…she is the sweetest thing you will ever see…and she does not bite… yet!

Sunday, October 10, 2010

more alike...

Over the past few months...Maddie has become a BIG Girl...she is a toddler! she may be small in stature....but she makes up for it in personality...she loves to help her brother do anything...puzzles are her favorite...she loves to watch barney and eat baby cheetos! I know healthy! but it is good self feeding...her love for reading matches Max at this age...Maddie is more like Max was at this age then not! REMEMBER...more alike...
this is therapy! self feeding and drinking...

I am the Sh@*ZZZ!

Look at my work!

Mommy does not want me to hunt!

Saturday, October 9, 2010

Hikes Rock!

start of the trail

we call this the butt tree this Chads but and Max is smelling it!

Maddie is still happy!

Getting bored!!

everybody pees!

wait up! Max is STILL talking...

I am so cute!

wait up! buttercup!

love the fall...

hiking is hard work!
we have been hiking...ALOT...Max and Maddie love it...it is GREAT family time...today Max and I chased each other down the mountain...and had fun hiding from Chad and Maddie...it is called the Bridle trail on Casper Mountain...it is a 4.5 mile hike...it has water falls, wildlife and great rock formations...Max does the whole hike by himself...he is a RoCKStar...and Maddie sings, talks and eats...soon it will snow...and we will have to figure out another way to spend our weekends...

Friday, October 8, 2010

boyfriend??

Maddie has a new friend…it is a little boy I take care for…he 5 months old and they have a BALL together…she gives him toys…then snatches them away with her little giggles…she gives him kisses and squeals when he comes through he door…he is her size in length and just smaller in weight but catching up to her fast…she is helping him roll over and she REALLY wants him to sit up and play with her…and she is so excited to chase him around when he begins to crawl…I am going to talk to his mom to see if it would be ok to put video up…they are so darn cute…Maddie loves being bigger and leading him…when he is in his bobby chair she goes over and sits with him…just smiling and giggling…he likes her to…he smiles at her and talks with her…I was scared to take a baby into my care…but I knew Maddie needed it…I knew she could learn so much from him…and I see her giving n' taking and parallel playing…the social interaction is invaluable….it is hard to see Maddie’s delays they are sooo in my face…but I am adjusting and understanding she will get there…on Maddie time…she is content, happy and healthy….I think they will begin to walk in the same time frame…should be interesting to see those two playing in the spring outside…

Thursday, October 7, 2010

balance the "normal"

“normal” it is a word that I use very loosely…it has made people cringe, offended and it is a word that people take as “not good”… This was my reaction when someone would say that Max looks good or “normal” or like every other child his age…I remember a teacher saying Max was the least of her worries and being so offended that I pulled him out of her class…I thought that if she did not have the good sense to tell me who she thought my child was…or something good about him...then she was not good enough for Maximus…my point on this is that I am a mother of a “normal” child and  I happen to be a mother of a “special” child…I do not parent them different I do not look at them different…Maximus is my prince and Maddox is my princess…I even worry the same about them…I worry that Max is not eating enough, drinking enough, sleeping enough, I worry when he coughs, I worry when he has not pooped in a few days…I worry that he is not good at school…I worry that I am not a good enough parent for him…I have and do have the same exact worries for Maddie…it is just I blog about hers...because that is my audience…an audience that will listen and not just roll there eyes…not many people care about how Max is doing…they do not care of his milestones because they are “suppose” to happen…Chad and I celebrate his accomplishments and achievements…just like we do Maddie’s…it can be a challenge to make sure Maddie is not getting all the attention…she is at the “cute” stage and Max is in an "ornery" stage…but balance is something I strive for everyday with my kiddos…

Wednesday, October 6, 2010

deliver PoSiTive...

Congratulations! You have just delivered a perfect baby…your babies health is going to be look at from head to toe!…she has 10 fingers and 10 toes that she will use to write her name and dance on stage…she may have a heart condition but no worries typically this can be fixed and we have the BEST team on the job…there is a little concern that her esophagus is not attached to her tummy…but that will also be ok…because we have the BEST surgeons in the land that will do this procedure orthoscopily…yes your baby has a little extra…she was born with trisomy 21, 3 copies of the 21st chromosome, Down Syndrome…this may sound scary…but you will learn FAST your baby is the same as your other babies…you will need to  KNOW one thing! You will need to understand that your baby will do things on her time...so throw out the books and developmental charts because your baby will go as far as you expect her to…please ask me any questions… please let me refer you to the Down Syndrome association in your area…I have set up for you to meet with the Child Development Center in your area to get you and your babies needs met…this is how the diagnosis should be delivered to the parents and families…not a sad occasion…a positive occasion…I know I would have not had such a hard time with the diagnosis…if doctors, nurses and the medical community….did not give the poor you look or the I know more then you because this baby is “special”…My baby is special…but only to me! not because of the Down Syndrome…I remember when Maddie was being pulled out of me…the Doctor gushing over her…he said she was feisty, and beautiful and said are you sure she has Down Syndrome?…she has great muscle tone…I held on to those positive words to get me through Maddie’s NICU stay…when I was pregnant with Maddie someone said Congradulations on having a baby born with Down Syndrome...at that moment I hated her...but know I think I should have said thank you and really meant it!

Tuesday, October 5, 2010

money...

Many may not know that just because you have a special needs child that child does not just automatically qualify for state or federal services…many people commented to me that Maddie would receive Social Security or other assistance…that is not the case…none of your tax dollars go to financially support my daughter…she did not qualify for anything…we are on the state Childrens Waiver list that will take about 3 years fingers crossed to be accepted…this will help with her OT, PT, speech and medical concerns…on that point I did choose to get pregnant and I did choose to have a baby that I knew would be a financial hardship…and me and Chad are doing good…better then I thought...we have to budget but who does not…you can make it work…However, insurance is a whole knew and very frustrating process…with the Health bill that not to many are fond of…gives my daughter the most important peace of mind…sort of…an insurance company can not deny her coverage…but they can deny her a procedure…they can deny her that heart operation, or esophageal surgery if they do not deem it necessary...that is frustrating and scary…it happens all the time…and I have been having trouble with our insurance company…last year I received a letter asking why Maddie was not receiving medicaid…I explained and had to give written notice of the reason...or they were going to drop her coverage…this year 3 different doctors have been told by our insurance company that Maddie is not covered by them and refused payment…I had to call an call an call to get them to provide payment…the hospital had to submit to them 4 times before they would provide payment…and just last night the HR person at Chad’s work that provides our health insurance called at 6:00 pm asking questions of who we use for doctors for Maddie…so insurance I am glad we have it…I just hope it will be there when we need it…

Monday, October 4, 2010

did you know?

Did you know that I cry when I see Maddie…not because she has an extra chromosome…but because that is how much I love her…I love her so much that I get a nervous stomach and I tear up…I do this because I cannot fix her hurts…I can not take away the forever medications or the future surgeries…I cry because in my eyes she epitomizes perfection…true perfection…this is Down Syndrome awareness month…and did you know that if you ever a child like mine...it will be ok…and that you will learn to love that child more then anything…did you know that you will find strength when you thought you did not…did you know that you will rise up and be a strong voice…and a voice that will be taken seriously…did you know that you will fight harder then you knew you could or ever wanted to…all things I have learned in 17 months of being Maddie’s mom…I cry because I love her…I just love her…

Sunday, October 3, 2010

a day in the life of Maddie...

Me an Max making a cardboard fort!

Enjoying some ice cream after our HARD work!

I like to chase trains! and eat them...

All this playing has made me sleepy!

Saturday, October 2, 2010

words hurt...

that person is so “r” word…I was just being “r” word…it is just “r” word…these are examples of conversations I have heard in the past…then when called on the word…”you know what I meant”…”I did not mean it in that way or to hurt Maddie”…”you know I have always said it”…honestly no I do not know what you meant…I do not understand why you continue to use it…and I am not happy that you continue to slip up and use it…I am not a fan of the “r” word…and honestly I do not care of the whole free speech argument…I think the word is hurtful and makes the person using it sound ignorant…my daughter is medically diagnosed and referred by the medical community as Mentally Retarded…I believe congress just passed that it will now be known as intellectually disabled…this is a great step…but it is up to society to just do better…whether it is labeling Black or Hispanic people, gays and lesbians, or people with intellectual disabilities…it is ok to be kind…a student asked Chad the other day in class “how does people with Down Syndrome  think differently then me?”…he responded they don’t…listen closely…Maddie will get it…she will know what is going on and that she was born with Down Syndrome…she will know about the “r” word and she will know that word hurts…she will come home crying and I will have to build her back up…please understand that people with Down Syndrome do know and are present in everyday life…they know they were born with a little extra…they know that they are a unique class of people…so do not assume that people with Down Syndrome are always happy, easy going, and have innocent minds…they are human and they have thoughts, feelings, and emotions…they are vocal and mindful of others…my Maddie just wants to grow up as “normal” as everyone else…so lets include instead of exclude…and keep the “r’ word out of our vocabulary…or you may just have to explain why you can’t to Maddie…when she asks you why?

Friday, October 1, 2010

a different road...

October is Down Syndrome awareness month...so I have been tossing the 31 for 21 campaign…I love the idea of everyday bringing awareness to my cause…I have to admit I am not a fan of sharing the month with other causes…I think it is hard to get the word out when there is so much to celebrate and campaign for…I have been thinking a lot about my reactions after Maddie’s diagnosis…the one that has been really clogging my mind is whether to terminate my pregnancy…I was not happy on how I was told…it was over the phone at approx 2:15 pm in the afternoon…I remember hearing the phone at 12:00 pm and thinking the Doctor was not to call until after 4:00 pm and Chad should be home by then…in my heart I knew the diagnosis…I new she was a girl and she was going to be born with Down Syndrome…I got up from my nap and saw the answering machine blinking…I hesitated playing the message…I knew when it was the Doctor not the nurse what the diagnosis was…I left a message and he called back immediately…his words…your amino came back positive for trisomy 21…it is confirmed it is a girl…I can patch you to the secretary to set up a time to terminate your pregnancy…I was speechless…I was devastated and he put the thought of killing my baby in my head…and there was no getting it out…it took me about a week or two to come to the decision that I would go through with having Maddie…after 17 months of being Maddie’s mom…I think that prenatal testing is absurd…I have a hard time believing there is a test to eliminate my daughter…92% of women do terminate there baby with a positive test…I do not judge them…I just know that it was not the road for me…when I look at Maddie she smiles and laughs…she is a human and she has a brain that is VERY functional…I love reading other blogs and learning with parents of children with Ds…when I was talking with Maddie this morning…I wondered what do our blog friends sound like? Do they giggle like Maddie? Do they talk and make the same noises as Maddie…her sounds are unique to me I have never heard a baby talk like she does…or shake like she does with excitement…all things I would have never known if I had made another choice…