Tuesday, April 28, 2009

True Inspiration!

This last week has been filled with feelings I never thought I would encounter, maybe it's naivety or ignorance, call it what you will, but this past week has opened my eyes, quite widely, to this new world I am in. This world of DS. It is only because Emilia has DS that families with children with cancer or other life threatening conditions have come into my life, through my blog or others that I happen upon. This unpredictable rollercoaster ride. This past week has been filled with news of last and final rounds of chemo, (great) to final chances of life, stressful tests and then the even more stressful, waiting for results. I've been angry this past week, very very angry. I hate cancer and heart conditions and freaky conditions that no one can explain, but can somehow take a child's life. Now, don't get me wrong I haven't been living under a rock all my life, I am obviously well aware that children get cancer and are born sick, and the outcome isn't always great. I guess what I'm saying is that I never had so many beautiful faces to put with such ugly sicknesses. I've never added so many children and families to prayer lists or asked other people to pray for so, so many. Some dear, but crazy friends have commented that for some reason, I am an inspiration. No, please!No, I am not inspiring. I did nothing but give birth to Emilia, who happens to have DS, and I doubted myself the whole time I was pregnant.I started this blog mostly to give hope to anyone who may have just got the news that they are being blessed with a baby who is going to be facing some challenges , and maybe as parents they are not quite sure how that could be a blessing. I just want to give encouragement, proof that it will be all good. I got a lot more than I bargained for, this blog has opened up yet another world to me. Families bonded together, families with faith like I've never seen, going through the same scary nightmares . Comfort being found in a comment or an e-mail from someone on the other side of the country or in another country for that matter. Thousands coming together to pray and give strength to one family fighting the battle of a lifetime. If you want to see inspiration, click on the "my blog list" there you will find inspiration, and they will lead you to a hundred more inspiring families. So to all the families out there, dealing day to day with uncertainties, thank you, for your inspiration and for letting us into your lives. God Bless You, All

Wednesday, April 22, 2009

Are you smiling? Have a happy day.

There is a form that springs from the heart, heard every day in the merry voice of childhood, the expression of a laughter-loving spirit that defies analysis by the philosopher, which has nothing rigid or mechanical in it, and is totally without social significance. Bubbling spontaneously from the artless heart of child or man, without egoism and full of feeling, laughter is the music of life.

William Osler

Monday, April 20, 2009

Monday, Monday...

best friends
sisters, friends and one little brother

I hate goodbyes. We had such a beautiful visit with Aniela this week, but all good things come to an end and it's back to California today. Back to auditions and dance classes and late nights working. You see Aniela is an incredibly talented dancer and choreographer, and has moved to CA to pursue her career. We knew this day would come, she has been dancing forever,it's in her blood, and seriously I can't picture her doing anything else. She positively lights up the stage and commands your attention. I guess we always thought she would head to New York, at least we would be within driving distance, but CA , she feels, is the best place for her. We are so over the top proud of her. She worked hard here at home to save money and found an apartment before moving out there. She handled everything by herself. Times have been tough on her out there, but she's chasing her dreams. Aniela you are so close to catching them. Stay strong and do what you need to do until you are satisfied. Remember, no regrets and we are always here for you. You are the bravest, I could never in a million years do what you have done. You are already our Super Star! We love you more!!!! Stay safe.

Saturday, April 18, 2009

part two

Ok these pictures were supposed to be with the previous post, but I goofed.
1- just in there for fun, I love this hat.
2-my gorgeous step daughter Aniela.
3 Casey,Sophia, Jacob, and Bella
4Andrew and Miss Angela getting reacquainted
5Sweet Jacob getting some love from Emilia
6Lovely Sharmaine with Em.

Just For Fun

What a wonderful night we had. Aniela is in from California for a visit, and friends from North Carolina came a calling also. It was one of those days you don't want to end, who knows when we'll all be together again. Although I think after a couple of really delicious chocolate cake shots, we made plans to head south to N.C, in July. Emilia was in her glory with all the new faces to smile at and arms ready to hold her. She is quite at home at large gatherings.

Thursday, April 16, 2009


God did not bless me with a huge family, I have no brothers or sisters, and over the years most relatives have passed away. Peter is originally from Poland, he does have a good size family but they are all still in Poland. We were certainly met with a lot of challenges. Raising a big family of your own with very little help is hard, more lonely, I would say. I would always ask God, why couldn't I have a sister, just one sister. Someone to just vent to or talk about nothing to. Someone who knows me, understands me and just puts up with me.When I found out about Emilia having Down Syndrome and the word was gently spread to friends, something amazing happened. I felt like they all formed this protective wall around me, they were there for me through out my pregnancy and after. They took on the role of family.Without being asked they were just there, to listen when I needed to vent or to talk about nothing , most of all they put up with me. So to all of you wonderful people who are always there for me, who have become my family, THANK YOU. To Sweet Melinda Faith, Emilia Faith's Godmother, who holds me up and continues to inspire me daily, a special quote to you "When it hurts to look back, and you're scared to look ahead, you can look beside you and your best friend will be there.” and may I add always holding the ball.

Tuesday, April 14, 2009

This is us!

Today is day one. My first post. It's pretty primitive compared to what's out there, but it is a start.Let me introduce ourselves,I'm Stephanie and my husbands name is Peter, then there is Aniela,22, Olivia,11, Sophia, 9, Bella,7, Andrew,5, and our daughter Emilia Faith who was born on October 22,2008,with Down Syndrome. That day turned out to be the happiest day of my life, but the months before her birth were far from happy. On May 21,2008 I went for a level 2 ultrasound, for no other reason than my "advanced" age (39). I just wanted to get in, get out and get on with my perfectly normal pregnancy. This was my fifth baby, and if there was one thing I could do it was have healthy babies. Well the technician came in and did her thing,now we had to wait for the doctor. We didn't wait long, great a quick acquittal and we're out of here.Wrong. Seems the baby had an echogenic bowel. That is when the bowels appear bright white on the ultrasound.The only part of the baby that is supposed to show up white is bone ,everything else is gray or black.It's not a huge issue the doctor assured me, but it is a soft marker. "A soft marker for what"? I asked. "Down Syndrome" the doctor replied. The feelings that immediately came over me were fear,I can't handle a special needs baby, our lives are basically over, doubt, how will we ever be happy again, guilt, what have I done! Were we greedy to want just one more baby? Anger, lots and lots of anger. Who is this guy? How can he sit there and tell me I could be having a baby with DS. Then of course came the mother of all questions from the doctor. "What do you want to do with this pregnancy"? Well, let me think about that,for starters how about I walk out of here the same way I walked in-PREGNANT ! To say I freaked out completely would be the understatement of the year, no the century. I even got the bright idea to take the AFP quad test. Bad idea, it came back positive. Within 2 days my odds of a healthy baby went from 1/75 to 1/2 . Things were not looking good.I took a crash DS course on the Internet to try to educate myself as much as possible. The good and the bad. We gathered the kids and told them as gently as possible that most likely our new baby would be born with DS. I had this beautiful image in my head that after we told them there would be a few tears , then immediate acceptance and a group hug. Wrong again. What there was, was loud wailing, fears of losing friends, fear of the baby looking different .Every one ran off crying and slamming doors. My husband Peter and I sat there with our mouths hanging open.Who were those kids, that's not how we are raising our children. Then my husband assured me, to give them time and they will come around . The first one on the scene was Bella, and what did this little sweet thing say? "we'll just love her".One by one they came around, and with the incredible support of friends and family we managed to get through the next 4 months of my pregnancy.It wasn't easy, I had at least one meltdown a day. There were days that I just wanted to walk away from it all. Doubt took over many times."I can't do this ",was how I began every prayer.Doctors visits, that in the past had always been something I looked forward to became stressful. Doctors were always too willing to remind me that 75% of "theses babies" die in utero, or (and this was one of my favorites) "the baby looks great, good heart, good measurements, but something catastrophic could still happen". Isn't that nice! But we went on, what else could we do.Finally it was October 21, my last doctors appointment, my due date was Oct 24, done with these stressful visits. Wrong yet again. My doctor suggested one last ultrasound since it had been a month since my last one. Fine, I'm 3 days away from due date, what could possibly go wrong. Well, after the ultrasound the doctor had a strange look on her face,"you have no amniotic fluid left, did your water break?" Ok, not to sound like a complete idiot but can your water break and you not realize it? Apparently so, I guess I had a slow leak. This was followed by, "we need to get you to the hospital and induced immediately". Since I had not had an ultrasound in a month and was unaware that my water broke, there was no way of knowing how long the baby was without the fluid.Great. The doctor didn't want me to go home at all, but what about the other kids in school, my husband, I couldn't just call him from the hospital. I got the OK to go home and take care of things but make it quick. I had my ultimate meltdown in the car on the way home. This time I started my prayer, not with the words "I can't do this", but with the words, "I am not losing this baby now, no way,You brought us this far we are going all the way"!!!!! On October 22, at exactly 5pm Emilia Faith arrived.The second she was placed in my arms I felt all the stress and fears and doubts just fall away, replaced with such complete happiness and pure joy and peace.
I have never felt the presence of God stronger than at that moment. This has been an extremely long post, but when I found out that Emilia most likely would be born with DS, I searched online for hope. I had no place else to turn. The doctors don't tell you things will be OK.They don't tell you, sure there is a very likely chance of some serious health issues and this is going to be the most challenging time of your life, but hang in there,have faith,whatever the out come, this is your baby,the one God picked especially for you.It's not a mistake,or a burden,it's a blessing. If I can be a comfort to someone ,who is where I was just a few months ago,that's great.I found a lot of comfort and support reading about families with children who have DS,and that life goes on and it goes on beautifully.