Semi Wordless Wednesday

clean from the bubble

time for a squeeze

chin attack

picking lilacs



Just a few words on one of the pictures. In the picture with Sophia, Emmie is attached to her chin. We laugh so hard when she does this. It seems Emmie's favorite thing to bite on is someones (preferably clean) chin. She will attach herself to anyone who gets close enough.

Memorial Day

Thank you to all who protect us

A lesson

Relaxing

Sophia takes the plunge

Snug as a bug in Daddy's arms

beautiful setting

the arts and crafts




Yesterday we went to an arts and crafts fair.It's well known in our area and everyone goes, it's always on Memorial Day weekend. This year we took the kids to the Pawtuxet Memorial Cemetery for a lesson as to why they don't have school today. It's not because everyone is at the crafts fair. We had a great time, as always. It was Emila's first time and she did great. Olivia was allowed to walk around with her friends, (first time ), it's a very safe environment, the street is closed and seriously every two steps you bump into someone you know, but Mom had a little anxiety at first, but Olivia followed the rules and everything was fine(of course). Thanks Livie!

What a Difference a Year Makes

May 21st, 2008

May 21st, 2009

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One year ago today , it was a beautiful spring day. One year ago today the kids went off to school like every other day. One year ago today I was four months pregnant,and my world came crashing down (temporarily). On May 21,2008 I went for a level 2 u/s, that was the day Peter and I heard the words Down Syndrome for the first time. Suddenly, that beautiful day was gone, replaced by darkness and fear, actually complete panic. For the next five months our lives were filled with mixed emotions, really good days and far too many bad days. I remember sitting there as the doctor was explaining an echogenic bowel (that was the soft marker seen on the u/s) to us, thinking, is he really talking to us? So many insane thoughts were running through my head. I thought, "see, this is where greed gets you, you couldn't be happy with the kids you already had ...just had to have one more." I was a mess, I wasn't being logical. Of course God would not punish us for wanting another child....how ridiculous! I would pull myself together for a while, then loose it again. I carried the u/s picture with me in my handbag, I would look at it everyday and think how can such a beautiful baby be anything less than perfect and healthy? I could see from the u/s picture that the baby(we didn't know if Em was a boy or girl) had Sophia's chin... it was soooo obvious. Everything looked perfect. "Perfect" to me meant, without DS. Being born healthy, to me meant, without DS. What a difference a year makes! My perfect, healthy baby, with DS is a treasure beyond all treasures. A blessing to our whole family, and a lesson in "perfection".

And the blind shall see...

..at least a little. My mother has been loosing her eyesight since I was a little girl.One eye was completely blind and the other was following close behind. By the age of 10 I could challenge any seeing eye dog,dare them even double dog dare them. I was good.I had to be,my Mom depended on me to guide her safely. She, somehow never lost her independence, even with her failing eyesight she continued to cook, clean, and take excellent care of me .When I got married and moved out, she kept up her apartment on her own. Over the last 5 years there has been a huge decline in her vision. She can't see anything but shadows, so she hasn't seen her sweet grandchildren. She remembers Olivia and Sophia as small little girls and Bella as a baby. Andrew and Emmie are only a vision in her mind.Eye doctors in the past have all but given up, we all did. Let me mention that my mother has never complained or lost faith.She's not thrilled and has definitely let God know(in a nice way) but her faith has stood strong.We were always hoping for a medical miracle... well, my mom went to a new doctor,who saw a huge cataract on her eye. He told her when he removed it ,she should be able to see something. At first I was upset at him, I thought he was giving her false hope.I didn't want her to get her hopes up.I mean it's been so long since she's seen anything. Thursday morning she had the surgery, everything went well.I talked to her Thursday night and she felt good,no pain.I didn't even ask if she could see anything.This morning I got a message from my mom.It went like this. "Hi Steph, it's mom, when you get a chance can you give me a call, I have something good to tell you... I saw a tree today, and a house." I had to listen to it twice, I couldn't believe what I was hearing. Of course I did call her and she proceeded to tell me that she picked out a stripped shirt from her closet. She couldn't even see her closet before. She can see her stove and kitchen sink.There is no color yet but we are not complaining.She went on and on telling me what she could see.Now it's not crystal clear but it's something... it's a miracle. Her doctor is going to do a laser treatment on her (for free) that should give her about 20% more vision. He never doubted. Now why did he have faith when no one else did? I thank God for putting my mom in the care of this wonderful doctor. Hopefully, she will be able to see all those grandchildren soon.

Little bloggers

My two girls, Olivia and Sophia, started their own blogs , they're so cute. Take a peek.

http://dancingsprinter.blogspot.com/ and http://stickthelanding73.blogspot.com/

I am so impressed they are only 11 and 9 years old

Just For Fun

POSITION :
Mother, Mom, Mama, Mommy, Ma
JOB DESCRIPTION :
Long term, team players needed, for challenging permanent work in an, often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities. Travel expenses not reimbursed. Extensive courier duties also required.
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RESPONSIBILITIES :
The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.
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POSSIBILITY FOR ADVANCEMENT & PROMOTION :
Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you
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PREVIOUS EXPERIENCE :
None required unfortunately. On-the-job training offered on a continually exhausting basis.
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WAGES AND COMPENSATION :
Get this! You pay them! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.
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BENEFITS :
While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.
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I love this, I laugh every time I read it. Sent to me by a true blue friend, thanks, Missy!

Try To Smile Monday

Who do these stinky feet belong to?

look out, she's gonna blow!

I said no more pictures!

Emmie gives a thumbs up

Must have been a ruff night

All smiles

Will the real American Girl please stand up

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Sophia took the picturese of Em at the top, we laughed until we cried. Hope they make you smile too ,on this Monday morning.

Happy Mothers Day

our first Mothers Day together

Celebrating Mom's Day at school with Andrew

Self explanatory

God's Masterpiece Is Mother
God took the fragrance of a flower...The majesty of a tree...The gentleness of morning dew...The calm of a quiet sea...The beauty of the twilight hour...The soul of a starry night...The laughter of a rippling brook...The grace of a bird in flight...Then God fashioned from these things A creation like no other,And when his masterpiece was through He called it simply - Mother.
- Herbert Farnham

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To all you wonderful mothers, may today bring you a time of peace, a day to simply enjoy your family. A day to put aside whatever weighs heavily in your heart. Just one day to walk lightly and laugh loudly, to celebrate the masterpiece you are.

A Good Visit

In this ,the smallest state, lives the biggest man. His name is Dr. Pueschel, M.D., Ph.D., J.D., M.P.D., He has studied in Germany,and Canada, earned a Master of Public health degree from Harvard. He became director of the first Down Syndrome Program, at Children's Hospital in Boston. Luckily for us in 1975 he was appointed director of the Child Development Center at RI hospital. His greatest accomplishment...raising a son with DS. When Emilia was born, the first thing the nurses in the delivery room said to me was , make sure you get in touch with Dr. P. , He's so wonderful, he works with children who have DS. Upstairs in my room at the hospital, again the nurses are telling me to make sure I get in touch with Dr. P, then one added with a smile, "he'll find you". At 2:00 am, the nurses came to inform me they were taking Em to the NICU, because she was having trouble breathing (it wasn't serious). After she was settled and I could see her, what do you think the first thing the NICU nurses said, oh, wait until you meet Dr. P. "OK, who is this guy and why is everyone so crazy about him"? I asked the nurse. Oh you'll see , she said, He'll be here before you go home, he always comes when one of these sweethearts are born. She added, "he retired 20 years ago but never left." Well , he did find us, I don't know how. The hospital must get in touch with him when a DS baby is born. He has his office at RI Hospital and the babies are delivered at Women and Infants, its all connected, there's also Hasbro Children's Hospital, it's a massive complex, really beautiful. I missed his first visit, Em was still in the NICU, he came and examined her and set up another appointment to meet us before we left the hospital. The second I saw him, I knew why everyone just smiled when they spoke about him. He just instantly relaxes you, He is soft spoken and kind, and he is so happy for you and your baby. He really seemed excited for us and the journey we were just beginning. And humble, I mean I didn't even scratch the surface of all his accomplishments and awards and honors, books, it just goes on and on, the man is a genius. At that first meeting Peter said something like ,we are really in good hands with you, and his reply was , "I know something about DS."I love this man. Another reason why I love him, he refers to all DS children as, "our children". I just can't say enough about this man. If any of you have met him you know what I mean. He is the Prince of DS. And glad to report Emilia, got a big thumbs up from Dr. P at her visit yesterday.

*Picture- this is about 2 minutes after having blood drawn, she's so good.

Tradgedy Hits Our Community

Yesterday morning a 15 year old high school student was struck and killed by a school bus,while walking to school. She apparently had earphones on and her hood up because it was rainy and was texting. The bus had a green light and was making a left hand turn onto the street the student was starting to cross. She was in the crosswalk, but what the news is saying is that she couldn't hear because of the earphones and the hood and texting limited her vision, she never saw the bus, and literally walked right into the front of it. A teachers aid was driving in to school at the same time (and was actually behind the school bus) and saw what was unfolding and tried to get the students attention by laying on her horn, but to no avail, she couldn't hear it. I am still wondering why or how the bus driver couldn't see the student. I think it all happened so fast there was no reaction time. The local high school is right down the street from my house, it's the school my children will go to and it is a school filled with children we know. We live in a small community, it's a town that when you go out to run errands you will definitely run into someone you know. I know yesterday we were all praying for the parents of this child. I can't imagine the grief they are going through, my heart is broken. She was just going to school, she didn't do anything wrong, and now she's gone, so quick. I am asking for anyone who happens by today to say a prayer for these parents. Keep them in your hearts. And please pray for the children who were on the bus at the time and also the bus driver who has to live with this for the rest of her life. I'm sure she is "what ifing" herself over and over. And give your kids a huge hug!

One Proud Moment

Thumbs up for Bella

(above)waiting to go onto the field, (below), watching the game

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Last night Miss Bella received the Most Improved Student Award. The Pawtucket Red Sox started this program to recognize children who have improved over the school year, it could be academically or behavioral. Bella was nominated for her improvement in reading,by her wonderful, fabulous couldn't live without first grade teacher ,Mrs. Robinson. Bella has really worked hard this year on her reading skills. It was a great night, we are so proud of you Bella, keep up the good work!!

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

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, 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.

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.

Friends

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.

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.