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.