just follow me! already...

Do you not just love anonymous…do you not just love people who comment anonymously…I do…I think it is hilarious when giving an opinion; and that opinion is obviously not of a person that has a child with a “special” ability…I am thankful they read my blog…and I even like that they take the time to comment…what I am not a fan of…the just roll with it approach…the just get over it line of thinking….and the just be thankful your daughter is able to be in the society in which we live…I read every comment…I take every comment and think about them…learn from them…gain understanding and a sense of reassurance…I even find peace in comments…to find others are living like me…that others think like me…that others are and have walked in the shoes I am so desperately trying to slow down…anonymous just needs to sign in…so we can have a conversation…about everything…and as for the doctor comparing my little girl to others…no he does not…not one doctor has compared Maddie…they always tell me Maddie is perfect for Maddie…it is the uneducated that compare my daughter…my daughter will not necessarily need assistance in school…she just may talk like she walked…and she may do math like she manipulates me…I do not know yet what my baby will need or do…that is the frustration of most…only time will tell if she is what the lame folk call a high functioning person with Ds…schools do NOT just provide what my child may need…that is a false hope that many believe that are not a mother of a extra ability child…the school will provide what they deem necessary and prudent to my child…based on the standardized test they will give her…and yes because of her diagnosis money will always be tied to Maddie in her education…punishment…no I love taking tests with strangers that talk down to me…with soft, fake, condescending voices I am sure Maddie wont mind either…she is just a child….right? and a child with Ds….so what will she know! Punishment … Nah…never forget when reading about a mothers journey…we are fickle at times…smiles

and so it begins...

Maddie is fast approaching her 3^rd birthday…with this of course there is party planning…but there is also transition…yes transition -can be good…needed…but obviously it comes with things that are not fun…irritating…changing of therapists…yuck! I am not happy about this…not one bit…but it is what it is…and so we move on…testing…standardized testing…hate those two words…especially when it comes to my Maddie…we are beginning to start testing to see where Maddie is at…REALLY I already know where she is at…and I know where she should be…so lets skip that meeting that tells me all the things I do not want to be reminded of…and then expect me to be thankful and positive…not that I am not thankful…but I am human and it gets to me when someone tells me that Maddie is testing at a 18 month age level and she is 36 months…sigh…and sigh again…when we were discussing dates, times and expectations of her new therapist and beginning preschool…I had a realization…a moment of clarity of sorts…I was talking about how it was Down Syndrome Awareness’s day and we were celebrating…and they did not know about it…WHAT!…it is almost the biggest day of the year and when you advocate for this cause you should know the day! 3/21 is a BIT obvious…(and for those who do not know 3 chromosomes 21^st chromosome =Ds) then I was mentioning testing and the lawsuit in WA…they knew nothing! Never heard of it…mind you one of these people is a mother of a child born with Ds…so I assumed she gets it! but no…then I realized that my world that I hold so close to my heart…is not everyone else’s…so for them to see the beauty in Ds comes from only my daughters looks…her attitude…what they feel when they interact with her…but “most” people I do not think want to feel the whole picture of living with a person with Ds…they want the instant stereo type that is projected from Maddie…cute, happy, doll like, quiet, -the perfect child…but this is not Maddie…but it is her in a snippet of time…and that is what standardized IEP testing does…they put a person in a little box…with a pretty bow and call it good…not quite capturing the whole child…or the whole package…so I wonder if I am a no show to the IEP meeting if they will think I am a bad parent that does not care…I am not…I just find it pointless…they asked me a ton of questions about Maddie and asked what my expectations of school were…I told them for her to have a positive educational experience and be school ready…what more can I ask…I am still her parent and her first teacher…Maddie is great because of who we have surrounded her with…little teachers run through my house everyday with her…teaching her life long skills that cannot be taught by an adult…I am going to miss watching her every second of the day…I am going to miss seeing her light bulb moments and having someone maybe -hopefully writing them in a folder for me to share…I am going to miss Maddie when she is at school…I know that it is the best thing for her…I know that it will be great and so will she…but I will still miss her…and I will still wonder what she is up to and if she is good…I feel like I blinked and she is almost 3! WoWsA!

that Maddie...

This morning Maddie decided she was going to watch old videos of herself…so sweet and cute she (is) was…there was one of her cooing and batting at her mobile…I remember that being such a huge milestone…and how it was then I began to enjoy the BIG things to us…we also watched a video of her eating by herself…it was jello and a mess and everywhere…not much has changed from a year ago…she is still making a huge mess and her food is still the texture of jello! But really I could not believe is how much she has changed into a toddler…a child…not a baby…she is not little anymore…sure she is in comparison to others…she weights roughly 25 pounds and dropping…and she is about 31 inches tall…so petite!  But full of spit fire…she is not very nice right now…everything is not fast enough for her liking and the pecs program and sign language is just not fast enough…she is a temper tantrum in waiting…at any moment she explodes into a screech and throwing herself down with one eye open to see who is watching…she has just started this bah bah bah cry that is very funny…but I have to not laugh…Maddie is picking up that everything she does I think is cute or funny…and she is using it to her advantage…when others see this behavior I get the isn’t this great look she is just like a “normal” child…yes she is like that “normal” child and then they turn 5 and the tantrum is not so cute anymore! I have learned through my 6 year old that you try very hard to squash the unwanted behaviors quick because they will haunt you don’t…Maddie is just pissed all the time…I know she is hungry…and I know she is having trouble eating and drinking…I am not sure if it has turned into a aversion to food…that she is turning 3 soon…her  “new” personality…or her esophagus is just that irritated…but what ever it is I would love to have the age old cliché -kiddos with Down syndrome are ALWAYS happy! referring to my Maddie…

witness...

“Side” “side”…one year old little boy says to Maddie…Maddie responds in her words and they go outside…he opens the door and shuts the door for her…she says thank you…and smiles…this was a great interaction to witness…Maddie being loved…I am not sure I understood this before I had Maddie…hard to explain…but Maddie is protected naturally by other children…I do not think they see her as “different” I think others like her happy and infectious personality…I see it most times when we are out and about…other children flock to her…and slowly this has taught me about loving Maddie…being thankful for Maddie…with Max it has always been expected…with Maddie it has been expected but it has been more of an unknown to see others reaction to her…to see if the world will accept her for her…Maddie is a “wanted” life…and I think that makes the difference in how others perceive Maddie…if I am ok with Down syndrome…they are…if I am ok with her angry esophagus…others are to…apprehension and stereo types come from me and how I present Maddie to the world…I think this is a very important job and one that will take a lifetime…Maddie is not a blessing…she is just how she is suppose to be…Maddie was not sent here to make me a better person or that I am a “special” parent…no Maddie is here because when the doctor asked me to terminate her…I said no…I was not sure of my decision on that lonely day…but today it was the best decision I have ever made…no regrets…no looking back…no what ifs…just a lifelong journey of happy moments witnessed by me…lucky girl!

band aids...

Maddie left the hospital late Saturday afternoon…still not eating or drinking…the doctor realized she was on strike and nothing they were going to do was going to help the situation…so we went home with no feeding tube…but a GI reader that tells us how much acid reflux Maddie is experiencing…she wore that till yesterday and we should have some results early next week…Maddie got in the car and asked her brother for some food and drink…he happily agreed and we were on our way home…she is on another medication to help with the healing of her esophagus…it serves as a band-aid of sorts for her very tender tube! The result of this episode is that Maddie will have dilatations every 3 to 4 weeks…no matter what…so that means a long drive for her and me…and one very unhappy girl! She is eating slowly and very cautiously…and her spirit is a bit broken…she gave me the silent treatment until today when she realized life was trying to get back to “normal’…I do not blame her…but it does hurt…that she associates me with this…because I am the one that puts her to sleep and I am the one that is there when she awakes…little comfort when there is no other options…I do not want the hospital to be as familiar as it is…I hate that I know my way and I know faces…I hate the smells and I hate the flitting reality that they do not live with this…we do…that this is a members only club that is very lonely…Maddie is on mashed soft foods for the near future…so things have not gotten “better” just more of no other options…the doctors and surgeons conferenced about Maddie and felt this was the “best” decision…one that we agreed with…how can we do nothing and have her esophagus close completely…how can we go with any other option? When there is nothing to be done…our hope is that doing this aggressive dilatation regiment will break the strictures spirit and stay open…this is what we have hope…nothing more…that is hard when I like stats an facts…but to this point the only thing I have learned is that an esophagus can get angry and have a mind of its own…who knew

hiccup...:(

when I awoke with Maddie in bed thursday morning I was full of hope...that today was the day that her issues with choking and not being able to eat solid foods would be over...she was snuggled in so tight to me...Maddie in the morning understood that today was different and that she was not going on the adventure she was hearing her brother talk about...she had not ate in a couple of days and took a few sips of chocolate milk shake the night before...I splurged and went to my favorite place to get coffee it is close to the hospital and it was as perfect as I remember..usually Maddie and I would share...but she was not having anything to do with food at this point...we checked in and everything seemed as normal as usual..familiar faces, smells, areas...nothing out of the ordinary...she had surgery to place the stent at 1 pm and was out of surgery at 2 pm...the doctor explained he was hopeful...he said the tighting of the esophagus was up towards the top more then he thought...but we would know within 24 hours if the stent worked...mind you this is a last ditch effort almost to help her esophagus open...otherwise we are runing out of "good" options...the nurses came to get me...I could tell by her face that it was not good...and I heard Maddie whimpering like I did when she was in the NICU from down the hall...and she was not ok...Maddie was out of it she did not acknowledge me which is off...she was coughing, throwing up and just not ok...I sat with her for 2 hours in the pacu and nothing was better...the nurses kept assuring me that this was "normal"...we made it to the peds floor...and Max and Chad were there to see how the Maddie was doing...she had no response to them...no response to her dollies...Maddie was just not right...the throwing up continued for the next few hours...it was changing colors...it was smelling different...and she was still limp...and then things started happening that never happen when I ask them to...doctors were moving, esophagrams were done with in minutes and the doctor was here...esophgram showed that her esophgus at the bottom of the stent had tightened...at 7 pm last night the stent was removed...it had moved and her body was rejecting it...our hopes of an open esophagus are gone...we are back to square one...and Maddie is pissed...not eating or drinking still...and as a family we have no answers...her esophagus closed in 1 week...we live 5 hours from her doctors...what are we going to do...currently she received a feeding tube...the last thing I wanted...and I hope today it will be removed...but I am not sure that is the best idea to advocate for...at least I know she is getting nourishment...we are at a loss...with no answers really in the future...but today is a new day and maybe the doctor had a bright idea last night....

stint time...

high ho high ho off to Denver we go...again...one week from the day...Maddie will have surgery to place a stint in her esophagus...lets just say the balloon dilation and botox did not take! when we returned from Denver last week Maddie did not return to her "normal" eating routine...she resumed basically how we left off...greek yogurt...not even her favorite cheetos and vegi stix...now she is down to juice or water and no milk...nothing thick...her esophagram today showed a VERY tight stricture with not much room for her to sustain...her esophagus looks like a sand timer hour glass thingy...very narrow...there is a sense of relief with this surgery...there will be a semi permanent meshed tube that holds her esophagus open...that is a sense of safety for her and eating...it has been a more then stressful event every time Maddie opens her mouth to put anything in it since she was born...the only down side to this procedure is that we will stay the night in the hospital...and there is a possibility that the stint will not work with her...if she does not return to "normal" they will remove it and we will be looking at another surgery on her esophagus...maybe while she is in the surgical room I will write a how to book for a new parent of a child born with TEF/EA...and make sure to tell them that this is not the "best of worst" like we were told...it is just what it is...aggravating, scary, stressful, time consuming, hard to watch, overwhelming, no control, and most important --worth it...all of it

wonder ponder...

there are many times I let my mind wonder...and it scares me...other times it is surprisingly delicious and satisfying...in the mornings when Maddie wakes up she enters the day with a phone call...she places her hand over her ear and begins to talk and have a conversation with someone...there are ooohhh''s and lots of gibberish....when I get her she always pushes back to see my face and my smile...she says good and then hugs and kisses me...everyday it is the same...I look forward to it every morning...this morning she began playing with her dolls...she lined them up and read them a story...she tucked them in with a blanket...she hugged them and then I realized she did the same thing she does to me...she looked them in the eyes said good and hugged and kissed them...when Maddie was younger I always wondered if she would play the same with dolls as I did...and she does...it is a very comforting feeling and sense of "normalcy"...then my mind wondered to a commercial...a mother and a pregnant daughter...and then the sadness comes...this is a question that I have thought about a lot and I do not know a good or correct answer for us as a family...will Maddie want to have kids? and if so will we allow her...WOW...how do we make this decision...is it a decision that Maddie will make or is it a decision that we make...will she someday watch her child play or will I be raising that child...this is a very uncomfortable subject...one that I am asked not to discuss in "real life"...I am shut down by friends and doctors when I bring this up...I just want to be prepared...I want to understand Maddie...I encourage her to be anything...and she in turn emulates my every move...so why would wanting to be a mother be any different...