Thursday, January 28, 2010

Bums up!

rock "bottom" happens…when you wake up and think your bum has a sticky substance on it…actually feeling like your bottom butt cheek is stuck to your leg…only to realize your butt has sagged, dropped, fell… and realizing your age has caught up with you…no more round rump...with bums up…Max pooped in the potty…would be good news but it has only happened once…with a little help…from mr. enema…and Maddie shot poop out her butt today (airborne)…but luckily for me I caught it …with my quick hands!

Monday, January 25, 2010

Blue...

blue that is what I would describe myself these days…I was such a happy person…now I feel vulnerable…inadequate…I wish I could just snap out of it…but I cannot…I go back to maybe it is because I did not exercise this weekend…or eat good foods…I am just struggling with myself…my identity…who am I…am I a strong mother that fights for her kids as hard as she plays with her kids…or am I a wife that cannot seem to balance anything that would support her husband…I used to smile an laugh and just be loud and not care…now I am reserved, shy and scared…the world seems to be going on with out me…I am not sure if I am jealous of it…or shocked that life goes on even when you are not participating in it…I guess time will tell…I guess for now I will eat more fruits and veggies…

Saturday, January 23, 2010

love spawn...

today I was in a class for my home child care…yes we have to go to classes and try to interact with others that are not under the age of 6…I was sitting next to two gals that have been in child care over 35 years!! holy crap not sure how they do it... I asked them how they have done it for so long…one replied I am mentally retarded…I paused and gave a courtesy grin…I understood what she meant…I am not sure if I was pissed at her or me…I wanted to say I do not like that phrase…I have a mentally retarded child…but then I thought it was not the venue…but then where is the venue…when is it appropriate? I like how people say to me…she is not mentally retarded she has Down Syndrome…I understand ignorance is bliss…but really no needs to sugar coat anything for me anymore…that got me thinking…Down Syndrome what does it mean? it means different things to different people…if you asked me a year ago what Down Syndrome was…I would say I do not know… they just look different…I did not know until Feb 17th 2009 when my doctor said Down Syndrome…a possible reason for the “no bubble” ultra sound…people will say hopefully Maddie is a “high functioning” person with Down Syndrome…this really does not give me any comfort…I have even said those words…Maddox is what she is…she is my daughter, my princess…I will love and support her with whatever…even if she is gothic, lesbian, transgender or religious…I just love her…next time maybe I will have the courage to stand up for something that is so hard for me…to admit she is a person born with Down Syndrome…and she is my spawn…

Thursday, January 21, 2010

S#!T floats...

last night we went swimming…we all love it…I love walking with Maddie in the lazy river and watching her smile…I love watching Max jump off the side and going down the big yellow slide…I love watching Chad with our children...it is such a great feeling…funny how in those moments…Maddie is “normal” and I forget all there is to think about…naturally as we are in the water poop floats by…I was grossed out an disappointed we had to leave…little did I know my fragile little world would be again full of “SHIT”...insurance companies SUCK! First another bill saying we have not met our deductible…REALLY…Maddox is a million dollar baby and we have not met are deductable! interesting…since I have not heard from them in 3 months…and when we go in for her check up…they start this….I think I have that taken care of everything…NO…the nurse from the insurance company calls to check on us…WHY…do they have a nurse that is so sad…she has no idea what I am talking about with Maddox…she has never heard of EA or TEF…lady! get on the internet and do some research then call me…and do I tell her everything or not…she does work for them and I do not trust them…then I get another call from them…saying again I have not hit catastrophic…I reiterated my case...NOPE! so I say send us everything...so I can go against all my bills and records of payment…I told them I will fight…I am sure they do not care...I am a little person in Wyoming and they are big insurance…thanks MA now my fight with insurance will not change or get better…this is how my world works…shit just keeps floating by…

Monday, January 18, 2010

Poop Training :(

I am not sure if Maximus will ever poop in the potty…I am slowly losing hope…he is SO strong willed…he sat on the toilet for 4 hours! Yes 4 hours…waiting for him to poop…he ate dinner on the toilet…hoping to have pressure gradient work…at 2:00 pm in the afternoon Sunday he asked for a diaper to poop…he only wears a diaper to poop…not at night…not on long trips…never…just to poop…so Chad decided this was the day he poops in the potty…he choose to take a nap instead of pooping in the potty…he slept then awoke and asked for the diaper again…we said no…and explained the plan of him pooping in the potty…when we finally convinced him to sit on the potty…there was tears, yelling, screaming, laughing and well him winning…he sat there…and about 2.5 hours in he said...you know what mommy this is fun sitting on the potty…we are reading books, talking, eating, and drinking choco milk! I am still not going to poop mommy! Chad and I took turns sitting with him…encouraging him…and getting frustrated and slowly realizing we were not going to win this battle…so it was 10 pm last night and Maddie was out of sorts and out of her routine…Maximus had all the reasons in the world why he would not poop in the potty…he would say I want my poopie to be sad, my poop is telling me it wants to stay in my butt, my poop is scared to go into the toilet….but I think the kicker was when he said that there was a carnival in his butt and that the poop was going down the roller coaster…but the poop was still not coming out! so I went to bed, Max went to bed…and he finally got a diaper around midnight…so now the plan is him to sit on the potty and get comfortable with out the stress for him…and us…again we failed…so I can hear my brother saying….who are the parents?

Sunday, January 17, 2010

Pressure Pressure...

pressures of parenting…I am always putting undue pressure on myself…and it manifest itself in my head…I am not sure why I cannot just turn it off…and I know I drive Chad nuts talking about it non-stop…since Max has been born I have worried about his position on the growth chart, nutrition, bowel movements, and how he acts and/or reacts to things and situations…when we were having Maddie I had enrolled him in tumbling…but I backed out when we came home…I was not ready to be in public with my little girl…of course I made the excuse that Max just was not ready…he is now enrolled in soccer for the spring…with Maddox comes so many pressures that I am not sure I can wrap my head around…I am concerned about EVERYTHING…whether it may happen in the next couple of days or in the years to come…of course I feel pressure that she is so small and that she has the darn-dest time eating solid foods…I always feel like I should be doing therapy with her and doing more, more and then some more…I even look at Chad when he is playing with her and think…he should do it this way or that way so it is more therapeutic….but there are huge pressures that I have lost sleep over…the other day I had a set back on my journey of acceptance… about not being able to do the “normal” things a mother does with there daughter…I have always looked forward to having Maddox go to prom, get married, and have a baby…yes I realize she can go to prom...but will this be a form of undue hurt for her…will the boy or girl that asks her to go…be sincere in there proposal…this makes my stomach hurt and I want to protect her from all the mean and snickers in the world…I have always wanted to plan a wedding with my daughter…be the mother of the bride…I never got to do this with my mom…and I think it would be so special…Maddie may get married but it is highly unlikely…I took for granted that I would become a grandmother…and this is another thing Maddie will be highly unlikely to do…this is where the mourning of the “normal” daughter over takes me…the pressure to do right by Maddie is intense….do we move to a bigger city so she has more opportunities to grow and to meet people…Wyoming is not very progressive and under populated…so to stay or to go…pressure sucks…

Friday, January 15, 2010

if he can...I can...

The week that was…it worked…I challenged myself and took a foster child into my home daycare…it was good for me to get out of my comfort zone…and remind myself how great my life really is…I see this little guy that is just 2 years old with no communication skills, no sense of control, and not knowing who anyone around him is…how hard is it for him to be 2 year old and put into a strange house, a strange bed and a strange family at 1 am in the morning…his parents are not getting him back anytime soon…so he will live in this strange world and just adjust…on day one I was not sure he would…it took him a morning…then he fit right in…hugs for all and his appetite for food, play and comfort is strong…if he can adjust I am sure I can…he did not ask for this discomfort…and I did not ask for mine…but at least I had the choice along the way…

Wednesday, January 13, 2010

Flawed thinking...

I am not sure how I feel about anniversaries…I am not big on remembering dates…I know the month I was married…but I am never sure on the day…the day my mom died I do not know…but I know the time frame around it…this falls in line with Maddox…I am approaching the one year anniversary of the “no bubble” ultra sound…I am emotional and want to forget…I am not to sure if I have seen a day of no tears since then…amazing how one thing can turn my head upside down…mind you it is a big thing…but never the less! I keep awaking to memories of things that have happened…like the walk from the Ronald McDonald house to the hospital…I remember everything the sights, smells, the construction…everything…the best moment was when I got to call my dad to tell him we were coming home…I do not have a worst moment…because Maddox was a ROCKSTAR…she passed every test and showed us what a fighter she is …I read a blog yesterday that really got me thinking…EVERYTHING I think of about Maddox is flawed…what I mean is…that I think the way I do because most of society thinks that way…because I have labeled her and accepted her label…I am on a journey now to re-write my interpretation of Ds…I have been stuck on the “R” word for way to long…almost a year! This morning I told Maximus it is most important to be nice first…I did not say he needed to find a cure for cancer…I said be nice…I think Maddox is going to be nice…hopefully her mom will be to!

Monday, January 11, 2010

the specials...

so I am still coming off my emotional roller coaster of a weekend…still not happy...it concerns me a bit...but I am sure it is just a winter funk…I began watching the www.the-specials.com ... it RoCkEd I fell in love! I felt so much emotion for the teens in the show…I am so glad that an anonymous friend suggested it to me! this is the first time that I have let in… an older person with Down Syndrome into my world…I was ok with it…I did not cry…but I did want to find love for them! I cannot wait for season 2! “the specials” is a web base reality show featuring 4 teens with Ds…very cool…check it out!

Saturday, January 9, 2010

Just tired...

have you ever had an “ahh ha” moment…and it is not the good kind…I am slowly coming to realize that no one wants to understand me…that they are getting sick of my inability to get over myself…and that my only outlet is this blog…how sad is that…I never in my wildest dream thought I could feel so alone in such a loud overpopulated world…I am sure this is a bit self imposed…but I am truly fed up… I am tired of people asking how things with Maddie and Max are and not really wanting to know…I do not ask how things are unless I really want to know…not just to be nice or make small talk…I really want a real answer…even if it is long, boring and/or sad…I get vibes that people think I should just get over that Maddie was born with Ds…that I should just be happy that she is alive and that she is not as sick as other people…ok…you deal with consistent worry of stricture and future surgeries…I am sick of hearing…at least she will not have surgery tomorrow…and that her heart surgery is not a big deal…because it is an ASD…not the “bad” kind...REALLY…she is my daughter it is a big deal to me…and I am not getting over that she was born with Ds…I am sure people would feel different if they were going through this…Chad always says this is a “members only” club…he is right…I just want to be heard and validated…that my feelings are normal and ok…I am sick of people rolling there eyes that I want Maddie to drive, be in a regular classroom, that I want her to be independent...oh yeah…this is my reality not there’s…I know she is only 7 months old…I get that she is a baby and I should enjoy every moment…because she is a baby-she is a PERSON…that will grow up…that is reality…I am enjoying her… but my experience is that bad things seem to happen when you least expect them to…it makes me see red when people say she is a miracle and that it is how it is suppose to be…REALLY…a DOCTOR fixed her so she could live…not someone’s supreme deity…she is not how she is suppose to be…she is not the daughter I dreamed of…I know this is harsh…just want the understanding…I hate the roller coaster of emotions that I am on…but it is not as easy as just getting over it…so for the moment...I cry in the shower to protect the people around me…someday I hope to sing again…

Friday, January 8, 2010

Oviraptor...

To be a mother of a 4 year old is an experience…I am not sure that I can get surprised or shocked anymore...but I think my kid is truly CRAZY!!! just think I helped make him this way and have encouraged it for years…because ….well he is so CuTe!! this morning when he was waking up talking to himself he was having a BiG conversation about dinosaurs...not to unusual…it usually that or northern pike fish stories…I went in to say good morning and remind him to pee…he said I will not be peeing in the potty I am a oviraptor! and they pee the bed…I thought he was joking…and said ok oviraptor…I went back in to check on him and he said his hand smelled like pee and giggled...I ask him… did you peee…YEP! I am oviraptor…jumped out of bed and went running! to be a mom! at least Maddie still thinks he is cUtE!

Tuesday, January 5, 2010

Maddox and eating....

to feed Maddie is an experience to say the least…you would think after 4 months...we would have it down…Maddie has discovered that she controls what she eats, when she eats and how she eats…she will block the food with her tongue…then decides if she likes it…then opens her mouth and somehow separates the veggies from the cereal and spits the cereal out…she actually thinks she is dying if I try to give her any kind of fruit…she gags and yells like she is choking…if she was not sooo funny and cute…I am not sure she would still be with us!! tonight while eating dinner between pea filled raspberries and flat out sticking her tongue out and spitting…her personality started to show through! and it was a sneak peek of just how naughty she is…she started whining and throwing herself back and trying to get Maximus’s attention…it worked…he ended up entertaining her through the feeding with laughs, kisses, and funny faces….he does not mind the spitting or the mess…it was neat to see them together…he loves her with every fiber of his being and she loves him more then anything…it was a perfect mess!

Friday, January 1, 2010

I like it...

What to think…I am not sure how I feel about 2009…but I am sure glad it is over…I am not sure why though…because on Jan 1, 2010 started the same as Dec 31, 2009…up at 7 am, feeding Maddox by 8 am and her sleeping by 8:30 am…I like it though…I like it a lot…I like her and I like who I have grown to be over this year…I am stronger then I thought I could be…my family is more connected…and I like it…now Chad and me work as one…instead of going in different directions…Maximus is growing up to be a fine person…a independent, full autonomous person…and he is good at it…he is nice and funny…and I like him a lot….this year is going to be good…a lot of big changes will happen this year…Maximus will start school and hopefully poop in the toilet…I guess that has to come before school! and for Maddox she will do A LOT of changing this year…she will crawl, talk, feed herself, and walk…big goals…I think she can do it all…smiles all around for the New Year….