As I sit here on the eve before my daughter's second birthday, I can't help but feel a mixture of emotions:
Monday, September 16, 2013
As I sit here on the eve before my daughter's second birthday, I can't help but feel a mixture of emotions:
Monday, February 4, 2013
Last year I had an idea. An idea to show the world what Turner Syndrome looks like. To date, it is and remains my most popular post ever. A fact that I'm both amazed and proud of.
February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness. Awareness of what Turner Syndrome is. Awareness to the just diagnosed, that this does not have to be a bad thing, and hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship.
The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for our girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls!
Over the past year I have learned to know many of these girl's mothers, and some I have formed life-long friendships with. And again, putting this post together this year, I have been moved to tears many times. Last year I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it.
My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Alone I'm just a single blogger, but together we can make a difference!
So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied, they are miracles, our one percents!
Sajda - 23 months
Sajda is the youngest of 5 children. She has 4 older brothers, but she doesn't let that slow her down!
Kessleigh - 2 years
Kessleigh was diagnosed at birth. Unfortunately she has a bad immune system and has been hospitalized 9 times for various sicknesses. She started growth hormones just this past January! Despite being tiny, she appears normal and happy!
Mya was diagnosed in utero via amnio which was performed due to concerns with blood tests and ultrasounds. Mya has had 2 eye surgeries to correct tear duct issues, and still needs at least 1 more. She has also had 2 ear surgeries due to chronic ear infections, which she is still battling. She started growth hormones back in July and is growing well with the extra help! Mya is happy, loving, caring, extremely smart and slightly wild, thanks to four older brothers. Her mother says, "We adore our little miracle more than words can express and can not wait to see what is in store for our future."
Ainsley and Aubrey - 2
Ainsley and Aubrey are identical twins with mosaic Turner Syndrome. Smart, funny, feisty, and always on the go. They love singing, dancing, playing at park, and reading stories. Their mother comments, "I've said it before and I'll always say it they may be tiny but they are definitely mighty! They are just amazing and bring us all so much joy!"
Juliana Grace Rose - 19 months
Juliana Grace Rose was born 6-2-11 after a very complicated pregnancy in which are parents were told she would never survive. She had open heart surgery at 3 days old but is doing fantastic now. She is funny, energetic and is the light of her parent's life. She absolutely adores her big brother Will and is fascinated by her new baby sister. She is already a little mother herself! She loves "Baby Signing Time" movies and is learning all the signs. Her mother says, "I can't imagine our lives without our little miracle girl!"
Brooke - 6
Brooke was diagnosed at 22 months with Turner Syndrome and Systemic onset Juvenile Idiopathic Arthritis. When she was born her parents had no idea she had Turner Syndrome. She did not show any signs or have any outward appearances of anything being wrong. Looking back, she had a few signs: she was small, had chronic ear infections and had texture aversion and could not handle anything with texture without gagging and often times vomiting. However, her parents did not find out about the Turner Syndrome until she became deathly ill with Systemic onset Juvenile Arthritis, an autoimmune disorder. Cancer had to be ruled out so a bone marrow aspiration was done. That is how they found out about the Turner Syndrome. Her mom says, "She is the light of our lives." She enjoys ballet and loves her kitten Bella.
Eliana Grace - 2
Eliana, whose name is Hebrew and means "My God has answered" has Classic Turner Syndrome. It has been confirmed she is missing one X chromosome from every cell of her DNA. She was born with a mild heart defect--biscuspid aortic valve--but currently is experiencing no issues. Eliana is tiny for her age, but is mightily equipped with her quick wit, strong sense of humor, and advanced verbal skills. Her only "issue" to date is a rare, vascular malformation in her foot. She is otherwise healthy, and is a happy, vibrant child!
Kiarra - 16 months
Kiarra was diagnosed when her mom was 5 months pregnant through an amnio. She was asked if she wanted to abort her, and says, "I'm so glad I gave my butterfly a chance at life we love her with all our heart and soul!"
Lily Brigid - 15.5 months
Lily was diagnosed with Turner Syndrome at 16 weeks gestation by an amnio done after the discovery of a cystic hygroma at 12 weeks. She had coarctation of the aorta repair done when she was 2 days old, and came home when she was 12 days old. Now, Lily is the most amazing little girl. She is cute, funny, and has a great sense of humor already. She just learned how to walk today. She loves her brother, sister, mom, dad, and grandparents immensely and is always giving hugs and kisses. Lily is smart too- she is learning baby sign language and is doing great! Her mom says, "Every day I look at her and smile, knowing she is proof that miracles do happen."
Kenzie Grace - 15 months
When Kenzie's mom went for her 20 week check up, she was told that her baby had fluid behind her skull, fluid on the tops of her feet, and fluid in her heart. The doctor mentioned that these things were markers for a genetic disorder. After essentially telling them that their daughter would likely not live, he said "because you live in NY state, I have to give you the option, would you like to terminate the pregnancy?" Kenzie's mom says, "There was no hesitation in our definite NO!" They went home to cry and to pray, and beg God to let their baby live. Psalm 27:13-14 became her verse for Kenzie "I am confident of this , I will see the goodness of the Lord in the land of the LIVING. Wait for the Lord, be strong and take heart and wait for the Lord." Kenzie was born 3 weeks and after a week in the NICU it was finally determined that she had Turner Syndrome. Her heart only has a bicuspid valve, it had a small hole, but God healed that! At 15 months she is a peanut - never on the weight curve, and she had a slight gross motor delay, but after a few months of PT she is almost walking! She says so many words and has such a spunky personality and is the biggest snuggler! Her mom says, "I have learned many things through all of this. your daughter has Turners Syndrome, this is not who she is. This will not define her, or you. Each of these girls is unique and special and beautiful."
Emmry Adelynn - 16 months
Ryann Michele - 6
Abigail Louise - 22 months
There was a large Cystic Hygroma discovered during Abby's dating ultrasound at 11 weeks, but Abby's parents waited until she was born to do the genetic testing. Abby has Classic Turner Syndrome (45x). Abby is very fortunate to not have any major health issues normally associated with Turner Syndrome. She is a tiny little bundle of energy who loves her baby dolls, dress up and a good sword fight with her big brothers who are 7 and 4.
Abbey Raelynn - 11 months
Emma T - 19 months
Emma A - 13 months
Abigail - 2
Ivy - 2.5
Josslyn - 7
and helping others like her.
Monday, January 7, 2013
If you follow me on facebook or twitter, you'll know that last Thursday was my first weigh in at Weight Watchers since mid December. It was not pretty... not pretty at all.
Up 7.8 pounds!
So with that, looking back on 2012, I managed to lose 8 pounds all year. 8 stinking, stupid pounds. I can just hear you now... at least you didn't gain 8 pounds. True, true, and you know what? You are right. I accept the loss of those 8 pounds, and move on. I weigh less than I did last year at this time, and although I wished I weighed even less, even 8 pounds is win.
All that said, I am not so happy with myself, and just ignoring the Weight Watchers plan since oh... maybe September.
And while it's so incredibly cliche it hurts my teeth. It is a new year, a new start, and a new chance to succeed. It feels good. I got right back to it on Thursday with this weigh in, and I've been making good choices and tracking ever since... even through the weekend. I am starting to get rid of the sugar high I've been on and try to really listen to my body.
2013 - What will I do with it? What are my goals?
My goal is simple, and no its actually NOT about losing weight:
Eat for fuel, give my body the good fuel it deserves, and stop feeding it full of junk.
That's it... it's that easy.
And yet, we all know that it isn't that easy. No... I'm not saying I'm going Paleo, or clean eating or anything like that, but I am trying to eat less garbage, more whole foods, more clean foods, less processed junk.
And I'm hoping in the process I lose more weight. My clothes don't fit, and I have several tubs of 10s and 8s I'd love to be in before 2014 hits! I'm hoping in the process I make it back to my goal weight, and can finally stop paying for Weight Watchers once and for all.
So, the first specific goal I'm incorporating this week, is exactly what the Weight Watchers 360 program is asking us to do: Eat a fruit/veggie as or with every snack. It sounds easy. It's not.
Case in point: Last night, 10 pm on the couch. I wanted ice cream, and no caramel sauce is not a fruit or veggie to add to it. Instead I thought about it for a long time, no rash decisions were made. And I finally decided I could live without ice cream - and I measured myself out a 1/2 cup of cottage cheese, and some mandarin oranges to go with it. It was tasty and satisfied what I was looking for without heading to the ice cream.
So there you have it. My 2013 goal.
Welcome to 2013! What's your goal for this year?
Wednesday, December 19, 2012
Again... so much I want to say, and so much time goes by as I struggle to get my thoughts into words that can come out of my hands. It never seems quite right. I start post after post and give up on myself.
It simply comes down to this. I AM STRUGGLING.
Lily turned 15 months old on Sunday. I ask myself, how did that happen? It seems like just yesterday she was a few months old, and we were struggling to even get her to drink one measly ounce out of a bottle. Now she scoots around - still not walking but I know we will get there and I'm trying desperately to be patient and not wish her "baby" time away. She eats lots of cheese, fruit, loves books, loves bath, and literally dances to all music she hears. She is a toddler. How did that happen?
And I look at my weight this time last year, and I look at it now. I've managed to lose 15 pounds the entire year. UGH! How did I let that happen? With a 15 month old baby, I should still not be trying to lose the baby weight. I should be at goal by now. Somewhere around fall, I sort of stopped caring, and I've gained about 8 pounds back from where I was (which was down 20+ lbs) since then. And you know what? It doesn't bother me, and that scares me... A LOT!!!!!
I know I shouldn't be so harsh with myself, but I am. You know, that is my nature. And, yet, at the same time it is not my priority right now. I have taken so many steps this year, to find myself again, and to love myself where I'm at, and stop defining myself and my worth by the number on a scale. This has been hard work for me, and huge! But at the same time the downside to this is some of that guilt, some of that definition was my motivation for losing weight, and now here I sit, less than a week before Christmas, and I will admit it is official - I have lost my motivation. I don't have pounds to lose because I want another baby, and there's really no special events on the horizon, or clothes I want to fit into (I gave up thinking of my size 8s a long time ago). I've really got nothing.
I've seen the insides of way too many fast food drive thrus in the past month.
I've grabbed way too many second helpings of food.
I've eaten so few fruits and veggies.
I've helped myself to snacks and candy I would have never before considered worth eating.
I've done nothing in the form of exercise except maybe haul in groceries from my car, or carry around Lily.
I've made fudge and 10 different kinds of cookies, and I've eaten them.
I'm struggling, and the further I get down, the less I know of how to make it all stop. I get into an all or nothing mode, a give up mode, and I just throw up my hands up and head to the nearest fridge, cupboard, drive thru, vending machine...
I have so many other things to think about - no that's not an excuse - I don't do excuses - it is however a reality. Lily has at least 1-2 appointments a week, I work 40+ hours a week, and every night I have to load up a needle and stick it into my precious baby's leg. That alone has me shoving a few extra cookies and an extra glass of wine for good measure into my gullet.
And really, I have nothing else to say.
I'm not sure how to move past this.
Any ideas? Let me know. I'm all ears.
Friday, November 16, 2012
Yes, I've disappeared, and I did want to pop by and let all of you know that I'm OK, Lily is OK. In the last 2 months, I've simply become overcome with work, and something had to go. I have missed writing, and so much has happened that I want to share. I'll be done with this craziness after November and I hope to begin posting regularly again!
I do post to facebook, even when I'm not posting to the blog, so come over and like my page!
As we inch closer and closer to Thanksgiving, I wanted to share with you what my 5 year "L" did for his homework last night. We had to talk about what it means to be thankful, and then we were supposed to decide together what our family was MOST thankful for. A pretty big task for a 5 year old. Anyways... I asked him what he thought our family should be most thankful for, and he came up with this completely on his own.
This boy makes my heart melt with his love and empathy for others.
Many blessing for Thanksgiving to all of you. I pray for you that the God that has blessed my family so immensely has also blessed yours, and you take time to reflect on everything you have!