Thursday, February 21, 2013

Bye, Down syndrome

If I could take away the fact that my daughter has Down syndrome, would I?  That's a hard question for me to answer. 

There is a fairly new prenatal screening that can be done on expecting mothers as early as 10 weeks, it's called the MaterniT21 Plus Screening.  This prenatal screen is a new blood test offered through Sequenom Center for Molecular Medicine and is designed to detect increased amounts of material from chromosomes 21, 13 and 18.  Giving parents a 99% detection rate for Down syndrome, with no risk to the pregnancy.  Which means.....parents can now find out earlier, safer and with more certainty if their baby will have a chromosomal abnormality and more time to decide where to go from there.  But what does that mean, "where to go from there?"  To be better prepared for the arrival of their child who may need immediate medical attention?  Or just to be more informed about Down syndrome and educate yourself and your family about this new baby coming into your life?  Or to terminate a pregnancy that no longer seems perfect?  More time and certainty for what exactly??? 

This is where I have a problem with this new test.  I'm all for being prepared and knowledgable about what is going on around you, or inside of you.  But I also know that some medical professionals themselves aren't relaying accurate information about what it means to raise a child with Down syndrome and how amazing their lives truly can be as they grow up into adulthood.  Possibly swaying an already saddened, scared, anxious mother, who only wants the best life possible for her child and possibly feeling like Down syndrome could be a death sentence, for everyone involved.  I didn't have prenatal screening with either one of my girls.  I didn't think I needed to be concerned about anything, and no matter what, my decision would have been the same regardless.  But when I did find out that Sophia had Down syndrome, shortly after her birth, I was given the news as if my baby had just died and my life was over.  It was dark and sad and awkward listening to the doctors tell me that Sophia had Down syndrome.  It never should have been like that, but I was one of the many lucky ones who got to take my baby home and fall deeply in love with every last chromosome God gave her. 

So, if I could take away the fact that Sophia has Down syndrome, would I?  Not if it meant that I would no longer have Sophia.  The effects of Down syndrome like; low tone, increased health issues and intellectual delays, do kind of suck.  I don't want my children to have a harder life than they probably already will, but that's life, it's unpredictable.  I wish that things were easier for Sophia, but I also get so much joy from watching her strive to achieve her goals and when she's a freakin party every time!  The truth is, because Sophia has Down syndrome, I have learned so much more about life, people, love, compassion, respect and understanding of other people's situations.  I understand that we all are walking a hard road in our own lives and it's not for me, or anyone else, to judge another human being.  Sophia, like so many other individuals, is exactly who she was meant to be, and I wouldn't change that for the world!

Monday, February 18, 2013


"You're crazy if you think I'm going to use this potty!"  Sigh :/

"I swear it wasn't me this time!!!"

"This is my dinner." :)

"Man, I'm exhausted!"

"I wonder if I can fit my face through these posts?"

"Fine, hurry up and take the picture!"

"Get over here and hold my hand, sissy."

"This is what I think about your camera."

"I will make myself fit into anything!"

"Check me out, Mom!"

"Concentrate, concentrate, concentrate."

"I just want to eat my Doritos in peace."

"I may have to take a crap."

"It's way to early for this sh*t!"


"Get out of the way, I'm trying to watch Barney!"

Sunday, February 3, 2013

Sick Baby

Sophia isn't feeling well.  She hasn't been feeling well for 9 days now.  It all started a week ago Friday with a fever.  She contined to have a fever for most of last weekend and then it finally broke and the head cold symptons kicked in.  Coughing, runny nose, watery eyes and just feeling like crap.  By Tuesday I decided we needed to see the doctor and find out what was causing all this ear infection and the common cold.  So we got an anibiotic and headed home to start feeling better.  But almost a week later, she still isn't feeling better :(  She still has a mild cough here and there and a runny nose, which is clear, but the miserable, tired little eyes that look back at me time and time again throughout the day, tell me that things still aren't right with my baby girl.  One minute she will be happy and running around like nothing is wrong and then in the blink of an eye she becomes possessed and this cranky, miserable, can't do anything to make her feel better, baby comes out and all the happy gets shot right out the window and misery sinks in...for everyone around.  There has to be something else going on, something else making her feel and act this way, but what???  Oh the joys of having a non-verbal child :/

Times like this, when something isn't right with my baby girl, but she can't find the words to express to me how she feels, sucks!  I hate thinking that something is wrong, like really wrong, but Sophia can't get those feelings across to me to let me know and I can't see clearly enough to know what could be happening right in front of me.  It truly is the worst feeling in the world. 

When it comes to Sophia, my mind races in a million directions when she gets sick.  I immediately start thinking worst case scenerio and a thousand "what if it's this?" pops into my head.  I almost drive myself into a panic thinking that something bad is happening in her little body and I'm doing nothing to help her, because I just can't read the signs fast enough.  Sophia has had medical issues in the past.  She also has a few, mild issues that continue to linger now, but with her diagnosis there are also many medical things that could pop up more so in a child that does have Down syndrome, than a child that doesn't, and that scares me!  It's always in the back of my head.  What if Sophia is like that child that I just read about last week.....What if one day she's fine and laughing and playing and the next day she is literally fighting for her tiny life :(  It consumes me some days.  And I hate feeling like this.  I just want her to scream, at the top of her lungs, "THIS IS WHAT IS GOING ON WITH ME.........!"  But the truth is, she can't.  Praying my baby girl starts feeling better, SOON!

getting some rest with her baby...