Looking Back

We were dealt the cards we were dealt when we had our daughter, would I change anything that has happened to us, maybe.  What would I change?  I would change the part where she needed open heart surgery.  I remember them throwing all this stuff at us, "Your daughter has Down Syndrome, she needs heart surgery, she will never do this, she will never do that, she may get this illness and that illness."  I remember being so very angry with God, and saying Down Syndrome wasn't enough? heart surgery too, why, why were we being punished, what did we ever do in our lives to have to endure such pain and heartache.
People said I was taking it so well, I was really holding up well, considering the circumstances.  I had to be strong, I had to for her, but on the inside I was dying, screaming, I would use my shower as the time to let it all out, to cry my eyes out.  It got more terrifying and frightening as each day passed, knowing that it was just a matter of time before they would have to cut her open, I couldn't bear to think about it, maybe it was denial, maybe it was just my way of coping.  I felt like a robot for the first year of her life, therapies, doctor's appointments sometimes 4 or 5 a week,  I was running on empty most of the time.
I was knocked into the realization of what was happening when we arrived at one of our numerous visits to the cardiologist and she hadn't gained any weight.  He got the surgeon on the phone and they declared the surgery would be the following Wednesday, there was a medical student in the room with us and I don't remember what his name was, but I remembered he stayed in the room with us to make sure I was okay. He was a stranger but he was so kind to me, he stayed and held my hand and said it was going to be okay, at the end he gave me a hug and said, I hope that was okay you looked like you needed a hug, he will never know what that meant to me that day.  I feel terrible that I have no idea what his name was but I like to remember him as an angel who helped me when my world was crumbling around me.
Once she had the surgery I probably got about 8 hours of sleep that whole week, and her surgeon kept telling me that I neeeded to sleep. It was very easy for people to give advice or tell me what I should do, but until they walked in my shoes they really had no idea.  I expected more from people, I expected them to be there more for us, but they weren't, not really, not the way I needed them to be.  I realize people have their own lives and I shouldn't expect people to just drop everything and be there for us, but  I guess it would have been nice, to have more support.  I will never be able to repay the people who were there for me,  I can't thank them enough.
People tell you all the time, oh I know how you feel, or try to tell you their situations.  NOONE knows what it is like to have a baby with Down Syndrome, noone knows what it is like to have you 3 month old need open heart surgery UNLESS they too have been through it.  Things are better since she made it through the surgery, I still have constant fear that they will find something, she will need another surgery, that she will develop other health problems.  It was hard for me to change the way I think, in fact I still have a long way to go, I have to start living in the moment more and not worrying so much, I have to appreciate each moment as it comes and live in the present instead of looking ahead all the time. I know that this is not about me and it sounds completely selfish of me to sound as if I am complaining, I am not complaining really, I just think that it would be helpful to other moms to know that whatever you are feeling it is okay to feel that way, you need to go through whatever you need to go through to get to that wonderful place of hope.

Sleeeeeeeeeeep

4 am has become the perfect time to rise and shine according to my almost 18 month old.  I mean I guess I can't complain she does sleep through the night, but 4 am uggggggh.  I have to start going to bed at 8 am I think, because I am so tired, it is 6:30 I am on my 3rd cup of coffee.  Well it's off to another day of Special Ed and Speech therapy, hope everyone has a wonderful day and if you have only have had 5 hours of sleep like me, I raise my coffee cup to you, try to squeeze in a nap today, I know I can't but I hope others are able to.

Signing, and Sneakers and Legos Oh My!!!!!!!

Little Miss is doing really well, standing and trying to cruise along the side of the couch with a little extra help.  She is saying baby, hi pa, and me.  She is also signing more, which is very exciting, she has been eating so much better lately as well, I couldn't be happier with how well she is doing.  She also got her first pair of sneakers because she has to practice her standing and walking in shoes for her physical therapy.

My little guy continues to make so proud as well, he is doing so wonderful in school.  He has been building one of the huge Lego sets he got for Christmas, he amazes me everyday how he able to put those things together in no time at all.  I so cannot do that, my brain repels legos I think.  He is amazing, he is 7 and is able to build the sets that say ages 10-14.  AMAZING!!!! This is the one he is currently working on 1368 pieces.

Did I mention how he amazes me, all by himself, noone helped him at all, he is Awesome!!!!!!!!!!!!

What's that you say?

In our little place in this world things are good, my almost 17 month old started standing and signing for "more" and "eat". I am so excited and so happy that she understands me and I now know what she wants, as for her speech, she says "Ma Ma" "Da" "Pa" "Baby" and "Apple" oh and she also says "mmmm" when you say, do you want to eat, do you want lunch?  So cute.  Anyway just thought I would update how things are going, we are painting my son's bedroom today, already went to our Weight Watchers meeting and we are planning to have some early birthday celebrations of some sort today since my birthday is quickly approaching next week.  Happy Weekend everybody!!

I am still Blogging here

So I am sorry for the lack of blogging lately, with the holidays, I got a bit distracted and barely had any time to sit down and write.  So our little girl is now standing, she will be 17 months old in a few days, she is so awesome and I am so proud of how far she has come.  We are crossing our fingers that she will be walking by the time she is 2, but no pressure.
I can't believe how big she is getting. I am going to try my hardest to blog everyday :) Have a great night!!!!!!

New Blog

Join me on my journey to getting fit and healthy, check out my new blog!!!!!!!!

http://adventuresofashrinkinggirl.blogspot.com/

2012 Don't Let the Door Hit Ya Where the Good Lord Split Ya

2012
Thanks for the memories, the heart ache, the happy times, the wonderful times. 

I learned a lot this year.

January- I turned 35 and my girl went off all of her heart medications, I remember never being so excited.

February- Loving spending time with the kids, it was a time of staying indoors a lot, and we celebrated Valentine's Day

March- Our 10th Wedding Anniversary

April- Our little girl was learning and doing so much.

May/June- We made new friends at the down syndrome association



July- My little boy turned 7

August- My little girl turned 1

September- Hubby turned 38 and little guy started 2nd grade

October- Our First Buddy Walk

November- We spent Thanksgiving at home and I cooked my first turkey

December-  Had a wonderful Christmas together and had lots of Elf on the Shelf fun