Saturday, December 11, 2010

It's been a little bit!

It has been a little while since I have had a chance to sit down and process all my thoughts. It has been very busy, and at times hard to keep up with myself. The holiday's are coming, and for those of you who get to relax, enjoy it... those like me, know holiday's is just another way of saying its time again to rush around, so everyone can see the kids and get their time in with family and friends from near and far. Hope every ones Thanksgiving was enjoyable. Ours was a little different this year, my grandparents are thankfully still here with us, and they were in Florida for the first time ever during thanksgiving, so it was very different. Although this year I was in a much better place then I was last year, and I have a lot to be thankful for.
Tagen has been enjoying school, and savoring every last moment he can spend outside until the cold gets to him, and boy did it get to him this week, he was sick all week, and naturally trickled down to the rest of the house. Although he was sick, him not going to school made him restless. To be young again and miss going to school, and if that's the only thing he is missing out on then I am happy. He is very big into trying to learn his letters, and draw pictures, although gets very upset when he "just can't". I miss when life was a simple as that, and that's the only thing I would get upset about!

Little miss Aubrey, has become a little girl, who is full of laughs. We have noticed more now then ever she is becoming a little freshy, and I have a feeling she is going to give us a run for our money. She is PROUD of herself, that she can sit independently, well now that's all she wants to do, forget about the days when she would sit on our laps and play. She is making some good strides as far a trying to crawl along with pull herself into a standing position. She recently had her 1 year eval from EI, ekkk, is my thoughts. It is so hard to see written down her delays in black and white, right in front of your face. Why was I shocked? maybe because yes I know children with down syndrome have delays, and I'm not denying that fact, but maybe I just hadn't seen any of the delays because I wasn't looking for them , instead I was looking at what she CAN do, and being proud of her for the things she HAS accomplished, not dwelling on the milestones she has YET to master. I mean her eval wasn't bad, at all, her EI team was actually very impressed, but I as a mother still had a lump in my throat during the eval, and after when they were telling me where she was. As a mother you always want to hear what is best for you children, you never want to hear they CAN'T even if it is followed by a yet, can't doesn't fit into the vocabulary us mothers make for our children. I prepared myself has best as I could but still it wasn't enough for me... and I wonder, if I made the right choice in having her evaluated. Is she on a shelf for show? or is this eval going to make the rest of her life? no of course not, it could have changed the second they stopped the eval, or a day, a week, or even years later. Aubrey has mastered waving hi and bye, giving high fives, blowing kisses, giving hugs, playing peekaboo, and pretending like she sleeping. She still does signs for mommy, daddy, all done, and more, although she is eager to learn more. She has learned to put her hands over her ears, as if to say "Stop talking to me" silly little girl! We have heard her say "mama" and "dada" maybe its us helping her say words, and she doesn't do it purposefully just yet, but we are happy she is making those sounds, and happy to turn them into words ( of course mama came first )!!! Never the less, she is still making great progress, and is bring joy to our lives everyday, along with Tagen!

Christmas is just around the corner, ughhhh, I have so much to do and I don't think I will ever be done!! I had my Christmas cards, stamped and labeled since Dec. 3rd- they are still sitting on the counter, ooppss. As they say, whatever needs to be done, will get done. hmm we will have to see about that!! This time of the year I always become, extra emotional, thinking back on memories, and watching all those commercials, you know the ones I am talking about, I tear up as soon as it starts. Old time favorite Christmas movies, and some new ones, that are worth watching. Thinking about people we were so close too, becoming someone we knew, and just thinking about how much as changed over the years, and what has always been the same! If I do not get on before the holidays, I wish you all happy holidays, and most of all a Happy new year full of new beginnings!

Tuesday, October 26, 2010

and Shes 1!

I can/can't believe that Aubrey has already turned 1! This past year brought sadness, along with great joy, new beginnings, new friendships, and lessons that needed to be learned. This month has had me very emotional, thinking back to the day I first held little miss Aubrey, and the hours and days that followed, I still can remember them like they were yesterday, even after a year has past. I often get the "She's one already WOW that went by fast." my response is "yeah for you it did, for me on the other hand, it was the slowest most dreadful year of my life." Naturally we had a HUGE first birthday party for her, and she slept through most of it, when she finally decided to wake up, she opened her gifts which she had a smile on her face the whole time, and also tried cake and frosting for the first time which she loved!!!
In this past year Aubrey has been through so much in her short life, and it amazes me everyday her strength, and I don't think she or anyone else (unless they have/are going through the same thing) will know just how much I admire her ability to be who she is. I also have to admire Tagen for everything he is becoming, and the sweet innocents he presents especially with his sister. The love her has for her is everlasting. Our family did the Buddy walk 2010 which was a great day for us, and so many other families. The weather was perfect. Tagen being only 4 knows his sister has Down syndrome which makes her special, but doesn't fully understand, which is completely normal. After the walk Tagen and I were talking and said "mom, we did the walk for Aubrey because she has down syndrome, were all those people there for Aubrey?" and naturally I answered " no many other people have down syndrome" and his response to that was " because we did the walk, do we have down syndrome now?" tears filled my eyes because he sees no difference between himself and someone with down syndrome, he doesn't feel they are different. I hope he will always have this out look, and he will spread that throughout his life to others.

It has now officially been 2 months since she had her heart surgery, and the progress she is making is remarkable. She can now sit up all by herself, with no support around her. She is starting to use signs to communicate to us (Thank you baby signing time) She has mastered 3 signs which are, mommy, daddy, and all done. She loves to clap her hands and say yayy! Aubrey understands what we are saying to her. We ask for a hugabug and she will rest her head on your shoulder and pat your back, We tell her to go sleepy and she will put her head down like she is sleeping until we say Aubrey wake up, and she pops up laughing. Dancing is Aubrey's strong suite, boy does she love to dance as soon as she hears music she will start rocking back and fourth and side to side. Although there are somethings she can not do YET, and that's a big YET, such as walking and pulling herself up into a standing position, she is beginning to be able to stand if we stand her up, which to me is good. Looking at Aubrey you can see the smile and feeling of accomplishment with every little thing she does. We have started changing over her diet, from formula to milk, and from baby food to table food, ( even without teeth yet, which are bugging her so much) She has had a great start, although we are alternating between everything right now until she is completly ready to get rid of the baby formula along with baby food.

Over this past year as person, as a mother, as a wife, as a friend, and as an educator I have grown so much, and I am truly blessed that I have been giving this opportunity to help this one little sweet girl, help change the world, Along with blessed that Aubrey picked me to be her momma. It took me a long year to get to this point, and to get to these feelings I now have, but I got there, and I will never let them go. Aubrey has taught be patients- I don't have to be in a rush for anything, and I get to cherish every accomplishment weather small or big Aubrey for fills. Not just Aubrey but even with Tagen, everything my children do, now mean so much more to me then it use to.

Saturday, September 11, 2010

busy, busy

We have been very busy in our house lately, Tagen started back in preschool, I started back to work after a year, and Aubrey is 2 weeks away from being fully recovered. Her surgery went AMAZING as I said in my last blog, and now that she is almost fully recovered we were not ready for her skill levels to jump as much as they did. Aubrey is fully off the Lasix now, and is back down to a normal calorie formula YAYYYYY!!! Her weight gain has been making great progress and she is 50% in both height and weight on the down syndrome girl growth chart! Sam and I never really knew just how much her heart condition had slowed her down , but we have quickly learned it played a huge part in her life. I feel awful not thinking it had that much of an impact on her, although there was no way for me to ever really know. I can not believe that she is going to be ONE already, where did the time go?

Since we have been home from surgery Aubrey has been able to move in her walker, backwards, but she still moves :). She has been eating more baby foods along with trying some table foods here and there, she is very picky and knows what she wants though ( that's my girl)! Aubrey has learned to finger feed herself with her puffs, yogurt melts, mum mums, ya know the finger foods for little ones. Although she has not said her first official word yet, she has been doing a great job responding to what you are saying to her, and babbling away in her own little baby talk. We are so proud of everything she is starting to accomplish, and we are confident that from here she is just going to do more and more.

Tagen is loving his second year of preschool , and is going to start playing soccer, which every morning i get asked " am I playing soccer this morning". He is growing up so fast, he's fresh yet he is so cute, some of the things he comes up with I just don't even know what to say. I end up walking out of the room laugh.

Thursday, August 19, 2010

fasting, pre-op, surgery, home

So trying to fast a 10 month old isn't the easiest thing in the world, she looks up at me with those baby blues like momma why aren't you feeding me.. broke my heart into pieces.

Pre-op was a long long day, we meet so many people, she had to go through so many tests, and we were given so much information, but not much had changed since her first echo cardiogram, besides the smallest hole she had in her heart had closed on it's own, but everything else was the same, which was a good thing. We were pleased, now for us to go home and try to have a good weekend.

Saturday we decided Tagen needed some alone time with his us, so we took him to chuck -e- cheese, and then to jaygees. Our mind was still on the fact that this surgery was in 2 days but we put it aside to give Tagen some attention.

Sunday we packed and got things ready family and friends visited to say good luck. I kept it together all day until we started to say goodbye to everyone and get into the car I lost it, this was reality I was really driving to put my little girl through pain, although I knew it had to be done. I don't think anyone in my position could eat Sunday night or sleep.

Monday morning I was dry heaving for about 2 hours, I was sick to my stomach I wanted to run away, I just wanted to get on a bus or in a taxi and take off, but I didn't... The next hours where the ABSOLUTE WORST for me. We were in a "holding room" where they had us change her from her PJs into their hospital gowns, and then they gave her the first part of her anaesthesia, I got to hold her this whole time and watch her fall deep into sleep, and then be taken out of my arms and walked down the hall where for the next 3 hours I had no idea what was going to happen. I cried for those hours not putting down her PJs she had been wearing- we had a nurse telling us what was going on in the OR, when major things happened, such as first cut, when she was put onto the bypass machine, when she was taken off, and when she was being stitched up. When I saw the nurse walking down the hall my stomach was in knots, it was really unbearable, sometimes it was to tell us what was happening, and other times it was to tell other families, either way it was so hard to watch her walk towards us not knowing what was going to be said. When they told us she was out of surgery and did great I cried some more but they were happy tears. I would never be able to tell any mother going through this that it was going to be okay because it wasn't. I will remember ever moment of this day, and I will wish and pray that will never have to happen again.

She was moved in the CICU and her first nurse was amazing, he didn't leave her side for a moment. After being out of surgery for a few long hours, she was taken off the breathing tube, and she was able to breath on her own. That night was the worst, Aubrey was not comfortable what so ever, she was tossing and turning and crying, she was inconsolable, of course I was thinking something was wrong, but it was simple just discomfort on her part. Tuesday mid afternoon we were moved into 810 on 8 east, but before we moved we had many people come in a visit Aubrey, just so they could see this little girl who was doing amazing after having open heart surgery. Our nurses on 8 east were amazing, Moura was our nurse during the day, she was just fabulous, so calm and understanding. Moura had told us that Aubrey should be the poster child for children going through cardiac surgery. Dr. Emani was her surgeon and he came in and checked up on her everyday, he was amazing, and I will never be able to put into words what he did for us and just how thankful we are for him.Tuesday night she had only had 1 IV left in her, and that was for medications that she needed to have for the duration of our stay. Wednesday went the same, she was doing amazing, able to take her medication, able to eat, laughing, sitting up, and just being herself. Thursday came around and she was little sore and cried for about an hour until the medicine kicked in and she was able to be comfortable again, and they took her out, checked her vital signs, drew some blood, and we were discharged.

Now before I get into us being home, I do need to say I met some AMAZING mothers, and fathers, but of course me being a mother I was able to connect with the moms easier. I met a women from Kentucky down in Boston with her 8 month old son who needed multiple surgeries, and had already had multiple surgeries, a met a another mother whose 5 year old daughter was one her 3rd heart surgery, her daughter had down syndrome and autism, 3 heart surgeries, I don't know how she did it, and another mother whose 4 month old son was getting open heart surgery. All three of these amazing moms were so strong for these children, and it made me feel as if I was not alone. Walking through Children's hospital you see many different things, kids with cancer, children that will never be able to walk, children just simple there for a broken arm, but we often take these hospitals for granted because we live so close, but just in Children's you meet people from all over the country. It also makes you feel blessed for what you have, and puts life into prospective, that life is to short, and you can't live with regrets, or question why, it makes you realize that their are bigger things in life, and the small things shouldn't matter.

Going home was a great feeling, we were greeted with balloons, and a welcome home sign, and family and friends. It almost felt surreal, to be home and back to everyday life. It almost felt like a dream, I felt like I still had to get ready for her to have surgery, but I didn't it was over with. A week ago today she was in surgery, and you would never know it. She is able to do almost everything she was doing before the surgery, besides laying on her belly, which is obvious. There isn't a greater feeling then to know that this is in the past and that chapter is closed and it's time to start a new one- and we all made it through, and took with us a life full of gratitude for the staff at Children's, and a piece of mind that we are that much stronger then we ever imagined.

Monday, August 2, 2010

days go by..

The days are going by one by one, so fast yet so slow. I try to forget but it wont leave my head, I obsess over things I shouldn't be dwelling on, because for that hour or so I'm dwelling on something else, I am not consumed with the fact that in 2 weeks I will be handing my beautiful daughter/best friend to a bunch of doctor- who might I add are human and can also make mistakes, to fix her heart, to do medical procedures that will help shape the rest of her life. I have watched Boston Med, call me crazy but its just something I had to do, not to mention I have DVR ed all of them and watch them over and over again, I need to know, I need to have total control I want to know exactly what is going to go on behind the doors.

There is one part that I keep imagining over and over and over, and its the part I need to say " see you good luck I will be here when they are done with you" and kiss her for luck, and watch them walk away with her, how can I do that? I don't want to give her to them knowing what they need to do, knowing that she could be in pain, and I will never know because I am on the other side of the doors. I have always tried to be this strong person that would not let anything break me, but this has done it, I am broken, if I could I would go through the surgery for her.

Aubrey is so happy, and constantly smiling, she has progressed so much over the past couple weeks, she claps, and does the sing for "more" she can almost sit by herself :) she is so full of life, and when I am around her I can't be anything but happy, but at the same time so sad because I know whats coming, she is living as if nothing is wrong with her heart, shes not worried, or scared. I am thankful she doesn't know and I can do all the worrying for her, because I have felt helpless for so long. I sat down and had a conversation with Tagen explaining that we were going to have to go to a place to get Aubrey's heart fixed so it works like his, and she will have a booboo but it will get better, but mommy and daddy wont be around for a couple days but he can come and visit, and while we have to stay at this one place with Aubrey he gets to stay at many places and have fun all day long, of course he didn't understand he responded to me with " who will watch us if you and daddy are going away" and " if she has a booboo and need band aids she's not going to use mine is she?" He's so cute, and Innocent and he has no idea what is about to occur in his little sisters life. Which is better for him, because he doesn't need to be scared about what is going to happen. I guess it is just hard, I never thought I would have to deal with all this, and I guess I am just going through a lot, I have good days and bad days, nightmares and nights where all I can is cry. I try to make a plan but I know I wont be able to go through with it. I guess these next 2 weeks before the surgery and probably the 2 weeks after I am going to learn a lot about myself, as a person, a mother, an advocate, a wife, a friend, a daughter, and a sister.

Wednesday, July 14, 2010

the date*

okay so I am not the person to answer the house phone, I barely get up and look to see who is calling because if its of any importance my cell phone will ring right after, and if its an appointment then I will have it on the answer machine to remind me ( I forget very easy, hence the reason why I am missing my keys and tickets). Today started out like any other day, got up feed and gave Aubrey a bath- of course Tagen was already up and out of the house at "Work". After the kids were all set I got to take a shower. I had just stepped out of the shower to hear the house phone ring, something inside me said go get that. I ran down the hall and saw "Children's hosp" on the caller ID, my heart sunk and I answered the phone very with a slow hello, to hear hi Jessica, I'm calling to discuss the date for Aubrey's surgery- I say " yeah I have been dreading this phone call." she says she understands but does she really? because I was being serious I wasn't lying. So I say okay well tell me and tell me really fast. She starts telling me about what will happen in the pre- op which is Aug. 13th- she tells me its a Friday i say OHH GREAT FRIDAY THE 13TH can't wait for that. and surgery will be Monday Aug. 16th. We finished up and we hung up, and I was frozen, I couldn't move, I couldn't speak, no tears, no nothing, I was numb. I called Sam and held it together, I called my mother in law and held it together until I was getting ready to hung up, and from there the other phone calls I made, I couldn't control the tears. As of right now- how am I supposed to feel, can someone tell me what I need to be feeling? No what, I look at the calender and cross off the days until then? Can anyone tell me what to feel!? UGHHHH....

Monday, July 12, 2010

tic..toc... waiting waiting waiting

first trip to the beach: First Play date:

First trip to the zoo:

So sorry it has taken me a while to update you on her cardiologist appointment two weeks back. With the 4th and Sam having some time off we did some family things :)!! The cardiologist appointment. went really well, The cardiologist says she looks great and to keep up the good work yayy for us!! We have narrowed it down to the last 2 weeks of Aug. but we don't have exact dates yet, due to a couple of things, 1- its summer so many children get surgery during the summer before school starts, and 2- they need to submit a request form and get the whole team thing together! So can you guess what we do now?? ohh yes WAITT! Sam has been asking me to call and see if they have set the date, although I want to know, at the same time, I don't want to call I want to wait until We get that phone call. I don't want to be a pain to the hospital and be that pushy person, but on the same note I don't want to sit back and just keep waiting and be put off, if that makes sense?! I have never been good at waiting, it seems like the days just come and go and not one call. When the phone rings I pause, my heart goes into my throat and my stomach is in notes, but when its not Children's Hospital calling I have a sigh of relief but at the same time frustration takes over. She had her regular 9 month check up and she is doing great on that end - she is actually on the "typical" child growth chart for length, not weight but we are getting there!!!

Everyday I see Aubrey doing more and more things, becoming her own person and she has taught me that we don't need to be a rush for everything, quilty as charged I was always in a rush, why? I have no idea why. Everyone is in such a rush, weather it be driving in the car, going to an appointment, getting through the work day, ect. but for what? With Tagen I couldn't wait until he sat alone, crawled, talked, and walked, but with Aubrey I am content with being patient and not being in a rush for her to do all these things because I know when she does master them it's going to be special and meaningful!

Monday, June 28, 2010

theres a pit*

Tonight there is a pit in my stomache, as I anxiously wait tomorrow's appointment. I have been waiting for this appointment for so long, wanting it to come, why now do I want it to go away, be put off for another few months? If we just keep holding on, and waiting, wont her heart heal itself? I don't know if I should smile, or if I should cry. I also don't know how I will feel after having an actually date. What would you guys do? Ignore it until that date came, or have a count down like it's a huge celebration. I wish I could pin point some words that would make all of you understand, but I just can't. Tomorrow Aubrey is going to see her Cardiologist and we will set a date for her heart surgery. call it overwhelming, bittersweet, catch 22 or whatever else. Its a ball full of emotions all rolled into one.I am hoping that by some slim chance when we start talking dates for this stepping stone in the journey this little girl has allowed us to be a part of, they will take into consideration what would work for our family, as well as be safe for Aubrey. I would like to see the surgery happen is Aug. that way in Sept. 1 it will not interfer with Tagen starting his second year of preschool, and 2 I will be able to go back to work and see my kiddies I miss so much! When Aubrey was first born I had questions on what to do next, well after seeing all the specialists it became a waiting game, the questions were all answered and we just had to sit back enjoy the ride and wait. After getting the date all these new questions are going to arise, how long will the surgery be, how long is the recovery, where are close hotels near the hospital, which one of us will sleep in her room, will I be able to handle all the IVs and machines she's hooked up to, will I be able to handle waiting in the waiting room. All these questions are running through my mind now that I know tomorrow is the day we will have a date. Its werid you pick a date for a wedding, and you pick a certain date for a party, but to pick a date for your child to go into open heart surgery? I just can't seem to come to grips with it.

This morning I was talking to one of my best friends, and she was telling me how Aubrey will be great and how we are doing so much now to help her in the long run, and those words brought me back to reality and made me feel like I was going to be okay again. This friend as a way of making me feel as if I am my old self. Even if we are not on the subject of Aubrey, she has a way of making me feel like me again, and making me feel as if my life is the way its supposet to be, despite everything. For this I can't thank her enough and I couldn't ask for a better friend. It's the little things that people say to me that make me feel okay again. As I write this blog I think of not only how I am feeling but, how people reading my blog will feel. I want everyone who follows my blog to understand just by taking the time to read this makes a difference to me. It makes me feel as if my story and Aubrey's journey isn't just important to the family, and close friends.

Friday, June 18, 2010

sweet sweet sunshine*

Oh boy do we love this weather!! Where to begin, many things have happened over the past few days :)!! Tagen had his first year of preschool graduation (he will be in preschool one more year) The graduation was so adorable, they sang songs, and got hats along with a little year book, and some gifts from the teachers. It's little ceremonies like that, you really appreciate the small things. The teachers he had were amazing, I'm not sure if he would of really liked school as much as he did without them! As we were leaving the school on his last day he looked up at me and said " hey mom, do you think we can plan a gradeation (graduation) party?" ha ha of course my answer was I don't think so, and he responded with " well, do you think I will get presents?" ha ha he's too cute for his own good!

We have started slowly introducing Aubrey to table food, which is going good so far (fingers crossed) some complication have been coming about, but nothing major that we can't take care of at home. Her PT has left us on maternity leave, and she will be starting to see a new PT for the time being... hopefully Aubrey is going to be a good girl and do the work, she very much knows what she wants to do and what she doesn't! We had our appointment with the down syndrome clinic in Boston , we saw many specialist on that day, a down syndrome pediatrician, a dentist, a speech pathologist, a nutritionist, and a PT. The all had good news to give us on how Aubrey is progressing, and how as of right now they have no concerns that need to be addressed. PHHHHEWWW, this was a huge weight off our shoulders, to hear specialist in Boston tell us that she is looking good so far, and that have no major concerns, until next time we can be a little be at ease. She also had a hearing test, why? because children with down syndrome are more likely to have hearing loss. There are many things that go along with down syndrome you wouldn't suspect, Hearing being one of them. Thankfully she also past that with flying colors, yet another sigh of relief.

Today with this sweet sweet sunshine, we were by the pool all day, on the swing set and so on. Tagen and Aubrey loved it. At first Aubrey was not to thrilled about the cold pool water but once she saw Tagen in it, she was okay with it. It is amazing how she reacts to anything Tagen does, and how much she observes him. Tagen of course is 4 and really has a hard time just sitting around and playing with his sister, but he does it. He was pushing her on the swing, along with holding her while they went down the slide. Just to see the fun, and joy on each of their face - Tagen's being a proud big brother because he is "teaching" her new things that big kids do, and Aubrey getting the attention she wants from her big Brother. oh sweet sweet sunshine, I hope you last for a while, because these memories we are making are forever!!

**So sad Celtics came so close, yet they were so far. Sports to me isn't about talent and interest anymore, its more about the money**

Tuesday, June 15, 2010

time flies*

Finally the sun came out and turned into a beautiful day! Tagen's last day of his first year of preschool is tomorrow.. oh boy- time flies, and I guess I never really thought about how fast the days, weeks, and years go by until I had Tagen. Aubrey had Early Intervention today ( she has a physical therapist that comes once a week) We love her physical Therapist, although today was her last day due to being on maternity leave- she'll be back in October. Her PT says she looks and is doing great, despite her low muscle tone which comes along with down syndrome, she is doing great. She has now mastered rolling over from both belly to back and back to belly, She understands the basics of what you say to her, example : do you want to eat? do you want more?.. things to that nature. We have been learning sign language, because for "typical" and children with a syndrome, it is good to start signing to them at a young age because it helps them start communicated earlier and faster. I don't quite think she knows her signs just yet, but I'm confident she will catch on, especially with the help of her big brother and her idol. On another note there is a certain therapy called hippo therapy which is when children with any diagnosis is entered in a program with PTs, OTs, and horse. Aubrey will be able to ride horses that are trained for therapy, it will help with muscle conditioning along with making her aware of her muscles by stimulation.

This month we have a few big appointments in Boston. One of these appointments is at the Down syndrome clinic in Children's Boston, she will see 6 doctors all in which specializes in children with Down syndrome. We are keeping our fingers crossed that these doctors will all say the same as her PT is saying. To think they have a specific clinic for children with down syndrome and have so many doctors that specialize in that area is amazing. The other appointment we have is with her cardiologist, and we will schedule her open heart surgery- scary?? you have no idea. Surgery- I never thought that one word would have such a huge impact on my life, sure other family members have had surgeries, I even did, but on my child- yikes. Knowing that not only are we getting a date for this surgery, we are coming closer and closer to the day, which again brings me back to time flies, it still seems like yesterday we got the news on how she needed the surgery. Yes I can't wait until it is over with and her little heart doesn't have to work in overload like she ran the Boston marathon everyday, but at the same time, its going to be the most difficult day for me, as I am sure it will be for the rest of the family.

Friday, June 11, 2010

"kids are so cruel these days"

Many people make the assumption that kids are cruel and nasty now a days, well yeah there might be a slight percent of kids that are just cruel, but there is a reason why they are cruel- I don't think anyone likes to be mean and nasty, something triggers it. I would like to believe that there is a higher percent of children that are nice and care although they have the "I don't care attitude."
The first couple of weeks- it actually could of been the first couple of days after we found out about Aubrey's diagnosis of Down Syndrome, I thought what about kids in school, will they be mean? what will they say? will she ever have boys calling the house? will she ever come to me and say "mom I like this boy, or can you teach me to use makeup", will she ever go to prom, will I get to go with her and buy her a dress, and take pictures and watch her drive off with all her friends in a limo ( although when she is that age, will they still have limos, ha ha, probably not, it will be something more fancy) Will I ever get to see her graduate- and so on and so on. These were and in a way still are some of my questions, and fears I guess you could say.
Today my sister graduated from Methuen High school, and it brought back the memories of me, when I was sitting at my graduation, and even further back, memories of high school in general. I remember the kids in high school with down syndrome where some of the most popular kids in the school, and your "typical" students were best friends with these children. The student body would fight to get into the "best buddies" program so they could spend time with these kids that had a diagnosis. Asides my memories, there was a handful of students in the graduating class tonight that had down syndrome, or another diagnosis, that were dressed in a cap and gown just like the rest of the class, and graduated, and was so proud, when these kids names got called they got a standing applause from their peers, which made me have goosebumps, and it brought me back to reality, and the fact that, SHE WILL have all these things and SHE WILL be able to do all these things just like everyone else.
So it brings me back to "kids are so cruel these days" yes there is a handful of kids that are cruel, but not all of them are, and its wrong to label all kids as cruel. Many kids are aware of special needs and look at these special needs children with respect and are able to say THEY ARE THE SAME AS ME. While some kids are being cruel not all of them are deep down, I think most children that are "cruel" are looking for a way out, they want to escape something in their own lives, and really can't help but be "cruel". Before you use this phrase "kids are so cruel these days", remember that their are many obstacles children now a days needs to overcome, and for the most part these children aren't so cruel!!

Thursday, June 10, 2010

It's all the same*

Today we had a good day, rain aside it was a good day. Aubrey ate her banana, peach, and raspberry baby food... only babies could like that stuff, I'm glad it's not me :)! Tagen went off to "work" with his dad, he gets an allowance of $5.00 every other week or so for "working" he thinks its 500.00 but boy am I glad he doesn't know that it isn't.. getting him dressed he wanted to fight with me about what he was wearing. I said to bad its raining your not wearing shorts, put these on... from my four year old son, I got " oh momma, your lame." LAME???? seriously... where do these children get these words from.. I'm lame psshhh!! He's lucky he is cute. Although as you see in this picture Aubrey loves her big brother, and likes to do what he does. When he yells she yells, its quite entertaining!
After I dropped him off I went to visit my husbands grandparents, with Aubrey, she loves looking at their fan, they turn it on every time we go there, of course she likes it, its moving, and its not going all over the place its just moving in one spot. Now usually when you say to Aubrey " where is the dog?" she just stares at you, today it was something different, Sam's grandfather said "Aubrey where's the fan?" and wouldn't you know it she looked up at the fan and looked back at him (she did this repeatedly for the rest of the time we were there, when we would ask her where the fan was) I was amazed, my daughter although she has down syndrome, and is going to have some delays, understands what we are saying to her, she really understands I couldn't believe it. I was excited, you would have thought she took her first steps I was so excited. On my way home from their house, I was thinking to myself, lady you must of fallen out of a tree and hit your head, because a child with down syndrome understands what you are saying, there is no "BIG" difference between a child with down syndrome and a "typical" (which I hate that word, can't we find another word for children without any syndromes besides words like typical, and normal?) so in other words, of course she understands, she is a child, yes she has down syndrome but what does that really mean? some delays?? To me children with down syndrome just have 2 words that describe what they have, (not a disease- they aren't looking for a cure, or a medical miracle to rid them of the down syndrome. ) Down syndrome doesn't define the person that these children are going to become, it just lets people know that, hey things might be a longer process with these children. So my thinking today is that, down syndrome or not, it's all the same, they learn the same things maybe a little slower, they can do the same things, treat them the same way, they have the same emotions ( I often get, oh shes so quite, or she never cries she is just happy all the time, well that in a way gets me angry, because shes not so quite when she is playing with her toys, she does cry when she wants something and can't have it.) Children with down syndrome, so live normal lives, and yes their may be some struggles but for the most part its all the same.
If someone came to me and said, you have the chance to go back, and turn back the hands of time, what would you do, most people would think I would say, let me go back and have a "typical" healthy baby, well I wouldn't change anything ( 1 in 800 babies are born with down syndrome, and I was luck enough to have one of the 1s), the fact Aubrey has down syndrome and a heart defect, in these 8 months I have learned more then I ever did in my 13 years of school. I've learned people are there for you, who is really a friend- and who is not, what life is all about, it has opened me up to a new world of people, a new way of looking at things in life, and most of all- appricating everything and everyone I have in my life. *and on another note, Game 4 of the finals, Let's go Celtics!!*

Wednesday, June 9, 2010

The very first one...

My name is Jessica, I am 23 years old, a mother of 2. My son Tagen just turned 4 May 29th, My daughter Aubrey is now 8 months old, she was born on October 3rd. Sam (my husband) and I have been together for 7 years and married for 2 of those seven years.

Aubrey was born a little earlier then we expected, she also came with a complete AV canal defect and down syndrome, although it was a shock to my husband Sam and I, as well as the rest of our family, we took it one day at a time and we are now patiently waiting for her surgery. Aubrey was a month early but weighted 6.9lbs. which to me that was a very good weight, right? Shortly after Aubrey was born she was brought into the NICU due to being 1 day shy of full term, she was in there for 4hours which to me it seemed like it was days- I just wanted my baby, I just wanted to hold her and stare at her because when I first saw her I thought something didn't look right, every mothers nightmare? I think so, but I needed her with me, I needed to be able to put my finger on what I "thought" was wrong. Finally she was wheeled back in, in the metal and plastic hospital beds for babies I guess you could say. I took her in my arms and looked and looked and saw a beautiful healthy baby, I was crazy for thinking something was wrong, of course it looked like there was something wrong she was just born, its hard for us women to be in labor but of course Aubrey had to do all the traveling, that's why her eyes looked like they did. Family and friends visited that whole day, and nurses seemed to just stay away, I thought maybe because there was so many people, then I started to feel as if I was being avoided, the next day came and the pediatrician was coming in to do her newborn check up, he was running a little late, but ended up coming in, my room was filled with family, and he had asked if they could step out for a minute while he talked to Sam and I. He started talking and talking in a round about way and started to say things about different facial features, and I just blurted out "DOWN SYNDROME, you ARE saying she has features of a child with down syndrome." he looked at the nurse looked at me and looked to the ground and said "well yes, we are going to order a blood test." That was it, I wasn't crazy this is what I was thinking the day before, this is what I thought I knew, why didn't I speak up? Was it denial, was it sadness, was it that I just didn't care about what she had, was I selfish and just cared that I was holding my child in my arms, maybe it was a little of each. The days after that were kind of a blurr, I just went through the motions got up showered, got dressed, talked to people yada yada yadda, that was what I was supposed to be doing right? I didn't let people see me cry, I didn't let them know how upset I was really was. I would bring Tagen to preschool and everyone would ask how the baby was and I was say " oh shes GREAT, such a good baby." when I returned home I would find myself on the ground crying uncontrollably. I received the phone call I had been waiting for, the doctor on the other line said "well test results are in, she has trisomy 21, in all 100 chromosomes we tested the 21st in everyone has 3." I didn't understand any of this, I said okay thanks and hung up the phone, took a minute and then realized I had no idea what to do next. I called the doctor back and asked if he could see us in his office the next day so I knew what I had to do. We went to the doctors office and talked to the doctor for a while, he had already made some phone calls to the down syndrome clinic in Boston, then he said he was going to take a listen, the next news we got was he heard a heart murmur and we needed to go see a cardiologist, I was numb completely dumbfounded, Sam and I walked out of the office the Secretary called and said you left without us making an appointment in children's hospital with a cardiologist, you need to go right now they have an opening. The news we got after that was she had a complete AV canal defeat and would need it repaired by open heart surgery. Again numb, I was feeling less, felt like I had been in a bad dream that was never ending. So here we are patiently waiting to get a date for her surgery.

Besides talking to family, friends, co-workers, doctors, and early intervention, I have not talked to many people. For a very long time I felt completely alone, until I read "Days with Dylan" I started talking to Laurie, and although we haven't known each other long, I feel as if I made a life long friend. I contemplated making this blog, but as I read Days with Dylan and then other blogs attached to Laurie's blogs, I soon realized that by Blogging you meet new people, going through the same thing, or just meet new people along with get suggestions and advice on different situations that comes along with having a child with down syndrome or any child for that matter!! I am not an expert so I will need as much information as I can get, and advice.