Maddie taking a stroll...

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scared option

When I was pregnant with Maddie and we knew she was going to be born with an extra chromosome…I searched and scoured the internet in regards to the amino synthesis being a false positive…I searched if there was different types of Down Syndrome…and if people that were born with Down Syndrome had different degrees of Down Syndrome…now I see that I was scared, pissed and very lonely…and did not understand a thing about Down Syndrome...this was before I found blogs and the network of friends on facebook…in my searching I just wanted Maddie only slightly to be born with Down Syndrome…I know this sounds silly…but when I first saw her I said she did not look like she was born with Down Syndrome…and I secretly loved it…I thought maybe she just did not “get it”…that something happened and the amino was wrong…then Maddie started doing things in the NICU and the nurses would say that it is good she is pissed and not happy about being poked….that it meant Maddie was a “higher” level of Down Syndrome…then we got her home and she was relatively healthy and she was on mark and on track with milestones for a short time…and again I thought she is so “high functioning”…then around 6 months I started noticing a lot of subtle delays…and more Down Syndrome features…again this scared me and I began to withdraw…and that is when I began staying at home a lot…I used the excuse I did not want Maddie to get sick…or I did not want people touching her and compromising her…so when Maddie turned about 1 year of age…I began to resent people that referred to Maddie as “high functioning”,  or that she seems to only have Down Syndrome a little…that is funny because Maddie has an extra chromosome and there is no getting around it…she is neither high functioning  or low functioning…she is simply Maddie…so the other day I read about the developmental chart for Down Syndrome…I have been having a hard time lately anyway…because of the little guy that is 6 months old that I take care of…he is showing me just how much Maddie is delayed…just how much Maddie is behind the “norm”…so again I am scared…I feel like there is a 2 ton weight of “I do not know what I am doing” on me…I cannot believe where some of her milestones are expected…independently walking down stairs holding a rail alternating feet…6 years old…I cannot wrap around the fact that I have Maddie…that she really was born with Down Syndrome and what that really means to me…Max has began asking why Maddie does not do some of the things that some of our baby friends do…and I do not know what to say…I just say --she will…Maddie will get there- we just have to help her…then my mind wonders…and again I am facing the huge responsibly that I have before me…being Maddie’s mom is not just loving her and being her cheerleader…because that is a given…but it is making sure she gets the best teachers, therapists, doctors and community…and holding myself accountable for her learning what ever it is she needs to be successful…it just seems really scary to me…when failure is just simply not an option…

chewing therapy...

FEED ME!
Maddie is telling me she is hungry...sitting under her monkey chair!

I am learning to chew! chicken bone anyone? anyone...

2 of hearts...

Sometimes I go to a different world when I am with Maddie…it is so peaceful…it is close to perfect-as perfect can get…I like that place it is where time slows down…it is time that I can enjoy her and that she can enjoy me…I hear nothing but Maddie’s sweet sounds…then the bubble pops…I yearn for more of this time…I am not sure if I struggle with Down Syndrome as much as I struggle being a parent of two children…they are equally divine and wonderful children…but I become sad when I cannot give them all that they need…it was a hard adjustment when Maddie joined our family…because I needed to cuddle her and sometimes I had to put Max on the back burner…sometimes when I read with Max…Maddie wants to join in…we of course let her…and Max puts aside the temptation to get frustrated that Maddie takes over the book…he is so patience with her…so kind…he is 5 years old and already making sure she does not fall…Max used to be the center of attention…and very much demanding of people’s time and attention….but he is now more calm and quiet…people would say hi to him before Maddie came…and now they bypass him and go straight for Maddie…he does not seem to notice but it sure gets to me…he is equally as great…and he is equally deserving of a simple smile and hello…I want so much for my children…and when we step out into the world it is so un-predicting how people will treat both of them…how they will react to them…Maddie who is sweet and ever so giving of smiles…and Max who is sweet and wants to share a story….sometimes I think I have slowed down so much compared to the rest of the world…that I am no longer able to relate to the world…

one day...

My typical day…great idea Unforeseen Gifts…aka Erin!! I am always wondering what my bloggy friends are up to in there day…are they busy? is it quiet? I wonder how doctors appoints and IEP meetings are going…and if they are achieving any big milestones…this is my new world full of great kiddos and great moms that are like my Maddie and me…and it is nice to share the sibling aspect to better understand my Max…I learn from my bloggy friends…I lean on them for advice and guidance on this unknown journey…our days are very typical and routine! and we are VERY lucky to have our therapist friends come to our home and our environment...
- up before everyone else…and to the gym
- home to get ready for my day with a hot cup of coffee
- my first little daycare buddy arrives at 7:30 am
- give Maddie her meds and first feeding
- the daycare friends arrive and breakfast making begins (8 kiddos in all)
- feed Maddie
- first therapist arrives
- arts, crafts and play for the other kiddos
- Bookmobile a library on a bus comes to my home
- lunch time feed Maddie
- feed all the other kiddos lunch
- get Max to wash face, brush teeth and dress
- off on the wagon we go to take Max to school
- happy nappy kiddos!! me clean!
- kids wake up and Max walks home from school
- snack - Maddie self feeds
- play, play and play some more!
- say goodbye to our friends for the day
- clean
- feed Maddie
- feed the rest of the family
- therapy (play) on our own
- Maddie to bed
- Quiet time
- off to bed we go
very routine and ordinary…but it is a good life…and one we like to keep simple!

HaPPie...

Maddie is so happy…she is just so happy…why does this drive me BONKERS! It does…I am not a fan of this phrase…I know I am to sensitive…and they are probably making a observation and just simply stating what they see…I get it!! REALLY…but I still cringe when it is said…I have begun to hear it more and more…I want to ask why…why do you think she is happy? What made you come to this conclusion…because Maddie really is not that happy…she is VERY opinionated! She is learning new ways of getting mommies attention and many of them have to do with yelling, crying, and pulling hair…so happy is not what I would use to describe Maddie…I would describe her as curious, funny, passionate, naughty, BUSY and into everything! She is on the go and is like the energizer bunny! She is always trying to escape out the patio door! Or playing in the toilet…and when she is denied the outside or the toilet…insert screaming! So Maddie HaPPy…only for the brief moment that she is showing you her new trick of waving hello or goodbye!  

good jinx...

Maddie seems to be in an explosion of development…this scares me…I am excited…and we celebrate…but I am scared…I am scared that her milestones will not take…that she will go to bed and she will not do it again for months…today for her OT she 4 point crawled the whole time…and she has been doing it for me more and more…2 weeks ago she began bear crawling and today she did it again…and then the biggie…she is cruising (walking with assistance)…I hope she does not stop and I have just jinx her! but with Maddie it seems we go 2 steps forward and then 5 steps back…she also got a tooth…YEP! A tooth...it went away for a couple of weeks but now it is back and has been front and center for a couple of days! Then when I thought she was choking yesterday I found another tooth…in the back of her mouth a molar! Holy CoW! Maddie is a RockSTAr….

4 point crawl



Bear Crawl

I do not try to be negative…but Maddie just does not do things…we have to work at it and practice it…and sometimes she will do it on a regular basis…and other times she will not…she will just suck her thumb and look at me with those baby blues…I tend to push Maddie harder then I think I should…I expect so much…from her…but I expect more from me…her development is not just my business...we have a team working with Maddie...and I have put pressure on myself to make sure my little girl is doing what is expected...sometimes I feel I am just not doing enough...but today Maddie RoCKeD it!!

Pureed Jell-O!

REALLY!! That is what we have to do…puree Jell-O for the Maddie…it is funny…and it is good…she has been signing more and putting her hands to her mouth to eat…vigorously with some loud screaming at me…so I decided to let her have a treat…it turned out to be great…she gets to practice self feeding…and experience cold, smooth, squishy, and she is happy…

Halloween-eee

Max is a STRONG bounty hunter! and Maddie a flitting BUTTERFLY!

Chasing chocolate!

LOVES chocolate and peanutbutter...

let me fly...

check it off...

After Monday I have a weird peace…I know strange…again I was put back in my place…I was reminded of the control I do not have…I thrive off of control and schedules…I love yellow post its….I love lists…I like checking things off…and I get excited to organize and plan things…it is safe to me…and I like the predictable…my whole life I have pretended to love spontaneity and surprises…it was sexy to me…I always told myself that I was good at change and comfortable with it…but I am not ….I hate the unexpected…and I hate when my schedules gets off…I do not like when I do not have my weekend planned out…so I have excepted that Maddie is NOT a check list…that even when she reaches a milestone…I have excepted it may only be for that point and time…and that she may not repeat it in 5 minutes or an hour or even the next day…she did have a tooth for one day…it is gone again…she did eat noodles for a week…but that is now gone…and she bear crawled last week but not this week…and she is currently moving her little legs in an attempt to walk…but I know this is months maybe a year away…If Chad says one more time...I do not care how long it takes Maddie to do anything…I think I will hurt him…my list of to dos for her is getting VERY long! But I have a yellow sticky to remind me of PATIENCE!

no teeth...no solids...

On Monday night Maddie choked…on a noodle…a baby noodle…it was different this time…the sound…the expression on her face…I knew it was not good…I took her out of her chair…started the process…her colors were not good…I ran outside calling for Chad…he started to try to make her vomit…she began puking and stuff came out…she started asking for more food…so I gave her some pureed green beans…again she began puking…so we began the process of getting Max ready to go with friends…and us heading to the ER…you see this is our new “normal”…to make sure this was a worthy trip to the ER we gave her some milk…yep…she puked it up…nothing was getting down…so we dropped Max off and we headed to the hospital…on the way there...Maddie perked up and began talking and just acting good…so I gave her some water…and there in the car I had to pull her out of her seat and make sure she did not drown in the car on bottled water and she puked…this was me not thinking…this was me thinking I could away with NOT going to the hospital…we arrived and we sat for 2 ½ hours in the waiting room…finally we went back and a doctor saw us…he of course had to put fluid down her and she again threw it up…this is going on 4 hours with having something lodged in her throat…and us powerless to hurry up the process…we could have been in Denver with her doctors….anyways x-rays were done and it confirmed the lodged noodle…surgery…yes that is what I said…Maddie at 12 am was put under and scoped with strange surgeon that we were not familiar with…the surgeon was awful and this is when living in a rural area is not a good thing…by the time he got in there…the noodle was gone! really…ya think…of course it was gone…6 hours later of her coughing uncontrollably…braking capillaries in her face and her acid reflux making her arch and throw back….the noodle was gone…my baby was put under…and then at 2 am they wondered why she was not waking up from anesthesia…so they admitted us to the hospital…at 8 am her pediatrician walked through the door…I was so happy to see him…I knew we would be going home…after this I have realized a few things…I love the doctors that have been with us from the beginning…I know they know Maddie and what there limitations are…I hate that Chad and I know more about her medical issues then the people that are trying to be the doctors and nurses in our area…and I know that this is our new “normal”…that Max knows that when Maddie has to go to the doctor he goes to friends homes…that he may or may not come home that night and sleep in his own bed or see his family…and Maddie knows that she just has to survive…with poking, prodding, and people that can only say….”you are so cute”…I know she was thinking…who cares if I am cute…just help me…just do your job…Maddie is doing good…she is back on pureed only foods no chunks…18 months no teeth and no good food…after Monday it reminded me to slow down…AGIAN…this is not a race…that Maddie is not the parent I am…so when she is throwing a fit to eat with us and our foods…I have to say no…I have to give her things that she cannot choke on an hurt herself…with every choke I understand there is a possibility for surgery and for repair of her esophagus…so today I slowed down…still frustrated with our local hospital and doctors…and relieved that Maddie is alive an kick’ in…