I understand criticism believe me, I am my biggest critic,  I got a comment on my blog a few days ago, that I can’t seem to let go of until I address it.  Someone basically told me “How dare I be so positive, don’t I know what my daughter is going to become when she gets older, don’t you know she isn’t going to always be this cute baby, she is going to be a baby trapped in an adult’s body someday.” I can sit here and type away and pretend that everything is always easy and just peachy, I can sit here and tell you that everything is just fine and that I don’t worry.  I can sit here and tell you I am the perfect mother and deserve mother of the year, and honestly it would all be a big fat lie.  I just live this life that was given to me, I certainly didn’t ask for it but it is mine just the same. I know that my daughter is a cute baby and she lights up my life, I realize that she will not always be a cute baby she is going to grow up just like my son is growing up.  Will everything be easy?  No, I never claimed that will be the case. Every day is not going to be easy, every day isn’t easy now. Therapy days are the hardest for me, it really sucks having therapists come into your home almost everyday and have to work with your child, it is difficult to have to watch her work so hard for things that just come naturally for other kids. It sucks big time quite honestly. But on the other hand we are lucky to have such wonderful therapists who truly love our daughter and who want what is truly best for her.
I have days when I throw myself a pity party, you know if you are a special needs mom you totally do it to, don’t lie.  Why my kid?  Why can’t we just have a normal life like everybody else?  And believe me we are totally normal, but it’s the days when she can’t just be a baby, when I can’t just take her out to the grocery stores because I am afraid she will get sick.  How terrified I am to ever have another baby, and won’t have another baby because I don’t want a baby to have to go throw what my daughter has gone through.
There are days when I feel great and those days do out number the bad days.  Noone knows how I feel, noone will ever know how it feels unless they know what it’s like, unless they too have had a baby who had open heart surgery, or a baby who has Down Syndrome.  It gets easier as the days go by, so in response to that comment, I do not “pretend” my life is perfectly wonderful.  My life is not perfect but it is wonderful, I am chosing to live my life with my children and giving them the best childhood that I can, I have bad days just like anyone else and if it gets harder then I will work harder and my daughter will work harder. This is the life I was given, so I am going to take it and make it the best life possible and give love and recieve love because isn’t that really what it’s all about, not this perfection that people seem to strive for, because noone is perfect Down Syndrome or not.

So Little Miss cries at the sight of the Physical Therapist, because she knows she is going to go through baby bootcamp when she gets here.  I felt so terrible, she cried like she was being tortured, but the therapist assured me she was fine and it wasn’t hurting her.  I wanted to scoop her up and just let her play, so many times I just want to throw my hands up and and forget all this therapy, in the end I know it is only helping her but I feel like I just want her to be a regular baby sometimes, to not have to work so hard all the time to complete the simplest task.
She will be such a blessing, and prove to you what she can do is what everyone kept telling us when she was born, a lot of the time I just wanted to say, why does she have to prove herself, why can’t she just be a baby. I get it and I know how far she has come, in less then a year she has gone from not even being able to sit on her own to standing and walking along furniture with no assistance and believe me I am so very proud of all she has done, but sometimes for her sake I just wish she didn’t have to work so hard.

I watched a documentary about Down Syndrome this weekend, I probably should not have watched it, maybe I wasn’t ready for it yet.  Right now she is just a baby, and she needs me, but someday she is going to be an adult who needs me.  The documentary was called Monica and David, it was about a man and woman in there early 30’s who were getting married.   The whole thing got me thinking, would my daughter ever fall in love, and if she did would she get married someday.  It just made me very sad to come to the realization that she may never know what it is like to fall in love, she may never hold her own baby in her arms, she may never do the things that other people do everyday and take for granted.
Thinking about these things truly breaks my heart, what if she never experiences these things and truly wants them.  It is times like these that I blame myself for her hardships for her future, I know they say I didn’t do anything to cause the Down Syndrome, but what if I did, what if it is caused by something they just haven’t discovered yet.
I know I am supposed to be positive, I am supposed to see the blessing in all of this, but it is hard sometimes. I know I gave her life, I know I gave her a chance and I will give her all the opportunities that I can.  But what if there are things I can’t give her, it scares me.  Sometimes you just want to crawl up in a ball and pull the covers over your head, and other times you are so happy to have this person in your life.  There is an upside and downside to all of it.

I have my whole family home today, because of the impending blizzard.  So I will enjoy having them here safe and warm.

My daughter turned 18 months old. All the things they said she would never do, the list is endless.  Well each and everyday she continues to prove them wrong. “She won’t understand basic directions,” they said.  “Where’s your socks?” She pulls them off her feet.  “Give mommy your glasses!” She takes them off and hands them to me. “Drink your juice!” Yup you guessed it, picks up her cup and drinks.  The list is endless of all the directions she is able to follow, and for a baby that wasn’t supposed to follow simple directions that sure is a lot. 
“She won’t stand until she is 2 or 3, won’t walk until she is 3 or 4.”  She is 18 months as of yesterday and is standing and cruising along the couch. Guess she just will continue to prove everyone wrong. Stay safe and warm everyone!!!!

My daughter and I have been stuck in the house for what seems like forever, since flu season has begun.  I am so looking forward to the Spring.  We have signed up for a Down Syndrome playgroup in our area, that will hopefully be meeting once a week in the Spring.  We will also be meeting with some friends that have little one’s with DS.  We are going to have lots of friends and support!!!!!! So here’s to Spring and getting out of the house.  What are you looking forward to this Spring?

I guess when I think about my daughter, I just see my daughter, I mean I know she has Down Syndrome, everyone knows she has Down Syndrome, or do they?  Sometimes I think people have no idea.  I can’t tell you how ofter we get stopped and told, “She is so adorable,” “Her glasses are so cute.” “How old is she?” Then when I say 18 months, you can see the surprise in their faces, “She is so tiny for 18 months.”  I usually just say, “yup she’s petite, or our little peanut,” and leave it at that.  I guess I think about that a lot especially when we are out.  Do they know she has Down Syndrome? Not that it matters. 
I remember last year being in Disney World with her, I felt like noone noticed, noone knew.  Then I would hear little rude comments, because apparently people think when you have a special needs child that you are deaf.  One woman who was pregnant said how cute my daughter was and her husband said “She obviously didn’t take care of herself during her pregnancy, there is something wrong with that baby!”  At that moment I think I had an out of body experience.  I went up to them both, and I said to the woman “you are right my baby is cute, but sir you are wrong there is nothing wrong with my daughter, she has Down Syndrome and I did everything I was supposed to do during my pregnancy, nothing I did caused her to have this disorder.” The woman apologized for her husband’s rude remarks and he didn’t say a word, perhaps he was too taken back that I actually said something to him, who knows.
So from that moment on I realized it doesn’t matter what anyone thinks of her, her family loves her and that is all that will ever matter.

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.

One year ago they wheeled you away on a bed that was way to big for you. I kissed your forehead and promised you, promised myself that I would see you later.  I watched you look back at us, I watched you look back as if to say, where are you going? Why aren’t you coming with me?  I didn’t want to let you go, I didn’t want to let them take you.  I wanted to grab you and run out of that hospital, but I knew I couldn’t, you needed to be there, they needed to save you.  A week earlier your health started to fail, you were “failing to thrive” as the doctors put it, the surgery needed to be done as soon as possible.  We were going to the cardiologist sometimes twice a week and to the pediatrician at least once a week, we pretty much lived in doctor’s offices.   The holes in your heart wouldn’t repair on their own, so they needed to cut your tiny little chest, they needed to put you on a heart and lung machine, they needed to patch the holes in your heart. 
That day was the longest day of  our lives, I can vividly remember every moment of that day as if it was just yesterday.  I remember handing you over to the doctors, I remember screaming inside, but I didn’t want you to see me upset so I smiled at you, kissed your forehead and broke down as I saw the doors shut with you on the other side.  There was nothing I could do now, what if you were scared, what if you were crying, what if you needed me, there was nothing that I could do.  You were laying in that cold operating room with all of those machines, you were probably cold, you were probably frightened and I couldn’t be there to hold you, I couldn’t be there to tell you that it was going to be okay, I couldn’t be there to wipe away your tears.  Minutes felt like hours and hours felt like days, not knowing was agony, 8 hours of surgery, 8 hours you were gone from me, 8 hours I couldn’t help you, I couldn’t save you. 
The doctor’s came out dressed in their scrubs, all I heard in the next few minutes was “She is doing good, the surgery went well, and you can see her in a few minutes.”  I didn’t hear anything else, the explaination of the surgery is a blurr.  I remember thanking God that they saved you, thanking the heavens and anyone else who was listening that you were going to be okay. 
When we walked into your room, I was going to turn around and walk out because I thought we were in the wrong room, it was only when the nurse called you by your name that I realized it was you.  You were so swollen and orange from the iodine, you had so many tubes and wires coming out of you, I couldn’t see my baby anymore.  Oh how I just wanted to scoop you up into my arms and love you and snuggle you but I couldn’t, it would be too long before I was able to do that. 
The next 8 days would be long and exhausting both emotionally and physically. Daddy and I never left your side. You were doing so well, until they gave you your first dose of morphine.  Your little pink body and face started to turn blue right before my eyes, and you were gasping to take a breath, I heard you inhale then exhale then I didn’t hear anything else, you had stopped breathing.  I have never been so scared in my life, Grandma and Grandpa had arrived just as this was happening, I think they aged 25 years before my eyes.  They had to insert the breathing tube again.  They saved you again, they got you breathing again.  The beeps and sirens of all the machines in your room, I will never forget those sounds for as long as I live. They would beep when your heart rate would drop and doctors would come in to check and make sure you were okay. 
I am grateful to all of your doctors and nurses for the wonderful treatment they gave you, they saved your life, they saved our lives, I can never repay them for such a wonderful gift. As the days went on the tubes and wires were removed one by one.  Each and every day you got stronger and stronger. I will never forget the day they nurse told me I could hold you again, they had to tuck all your wires in and hand you to me.  It was so wonderful to hold your warm body against mine again. I was scared you wouldn’t know me, I was scared you would hate me for leaving you that morning with strange men and women dressed in scrubs.  But you knew me, and you didn’t hate me, you fell asleep in my arms that night, and I have never felt so content and happy in all of my life.
By the 8th day the doctors said you were ready to go home, your little body had endured so much, I was afraid to take you home.  It was such a wonderful feeling walking through those hospital doors knowing we were on the other side, we were going home.

I cried the a lot that week, I cried more tears than I thought was possible.  When we got home it was hard, I was afraid, afraid I would hurt you, afraid you were too fragile.  But each and every day got easier and easier and we got through it all.  You were a new baby, you had become the baby I believe you were born to be, you had strength, energy, you yelled, you cried.  Before the sugery you couldn’t cry your body was too weak, so we had never heard you cry, not once.
You began physical therapy and speech therapy in November.  Each and every day you have been proving to everyone just how truly wonderful and strong you are.  You are eating better, you are sitting all by yourself, you are doing the things that some doctors said you may not do.  It is going to take you longer than most babies and you may have to work a lot harder than other babies but that is okay with me.  You take your time, you do things when you are good and ready.  I am so glad that the surgery is behind us, and your cardiologist appointments have become yearly visits instead of monthly visits.  We are thankful that we were able to get through it all even though at the time we had no idea how we would.  We are thankful for our true miracle, our gift from God.

I know that my little girl will do things in her own time, she will do all the other things that other babies do when she is good and ready to do them.  I know how far she has come, to barely being able to hold her head up at 5 months old to holding it up just fine now.  I guess I see other babies online that are younger than her that are sitting, crawling, standing, walking even and I start to feel sad for her.  I am not sure why, I mean I know she is just fine and she is not sad about it, I know that when she is ready she will do it.
She has become very stubborn,she will talk and babble while the physical therapist is here, she is really vocal.  But the minute the speech therapist walks over the threshhold, mums the word.  I kid you not, not a sound, not a rasberry, NOTHING.  The therapist tries anything and everything to get her to make some noise, and she’s like “Nope, not today lady.”  How does she know?  It’s like she knows exactly what she wants her to do and she will not do it.  “I will talk when I want to talk lady and I don’t want to talk right now, so there”  The minute the speech therapist leaves it’s like the flood gates open, and she has so much to say, she really can’t contain herself.  It really is too funny, boy am I in for it when she is a toddler, a teenager.