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…

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…

in the eyes...

Two 6^th 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…  

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…

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?

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!

why do we wear seatbelts?

Make an on-line slide show at www.OneTrueMedia.com

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!

Pumpkin PoWER...

messy Maddie



to much ice cream! time for a bath ;)



oOPs! I fell in brothers ice cream!



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…