Mitchell signed milk!!!!!!! I can't tell you how excited I was when I saw him asking for his milk at dinner with the sign for milk instead of just pointing and grunting. Then Dave says, "Oh yeah, I forgot to tell you he did that this morning!"
This week's Wordless Wednesday pic - Cameron has become a little ham. Whenever I take a pic of him, he makes this big cheesey smile. I love it! (Where do kids get these things from?)
Black Friday - I did NOT get the DVD players from Target. I am easily persuaded and I mentioned to my brother that I was getting them and he made a comment like, do you really want the boys to sit in front of the TV in the car? After a little thought, the answer was a definite "No." I say this because the boys are so good in the car, they enjoy looking out the windows, babbling to eachother, and sleeping. Cameron is already so obsessed with TV, I didn't think it was a good idea for him to watch more.
Hobbies - My hobbies pretty much consist of reading and shopping. I don't have time or money to shop anymore except for necessities. I used to read books, but for the last two years have become obsessed with reading DownSyn and from there have become very involved in the blogs of the mom's who post on there, and then there's Facebook. I cannot keep up. So for the two people who read my blog, I want to let you know that I am reading yours as well and really do enjoy your writings, sorry I don't have time to comment often.
I love shopping and I love a great deal. I also happen to be sort of a morning person. Therefore,
After eating too much food, I veg out on the couch and dive into the sale ads. I get a paper and pen and I make out a "game plan" of which stores we need to be at and when for the best deals. This year I discovered that you can look at the sale ads online ahead of time (yeah, I know, I'm a little behind in the times). I am extremely excited about this deal specifically.
We have been discussing getting these for awhile now. I will be getting to Target bright and early!
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters”.
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases, and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother”. We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat”. We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
What is Kelly's Upside Down Ball? It is a fun night out and 100% of the proceeds go to families who have a child with leukemia and Down syndrome. You know you want to come. Here are all the details.
Can't make it? I hope you find it in your heart to donate to this wonderful cause. Click here to help out so many families who need it.
I will be volunteering at the ball tomorrow night. This year's theme is Country! I am SO not a country girl, but I think I have found cowboy hats for me and Dave to borrow. The boys will be going to the kid's party. It starts at 7pm (Mitchell's bedtime) so we'll see how they do. I've heard it is a great time, I can't wait. (I couldn't make it last year cuz Mitchell was just born).
Our friends, Andy & Erin are getting married today (FINALLY!). They are both such amazing people and we love them dearly. Erin is bubbly, fun, outgoing, and a great listener. Andy is compassionate, funny, outgoing, fun and also a great listener. They both love children so much and I pray that the Lord blesses them with many children when the time is right. I know they are going to make wonderful parents.
I also know that Erin is going to make a beautiful bride and that Andy is going to cry (probably during the entire ceremony). I can't wait to celebrate your new lives together.
I was so excited about becoming an aunt for the first time. I waited at the hospital for hours the night before you were born, not realizing that labor and delivery can take awhile.
The next day when I saw you in the nursery, I remember thinking, that can't be MY niece, she's all wrinkly and icky looking. You were beautiful, but I was an egostical 18 year old with very limited exposure to babies.
You are a genuinely wonderful person and I am SO proud to call you my niece and Cameron's Godmother.
My DownSyn friend, RK posted on her blog some random questions. Here are my replies:
1. When it comes to Halloween, which are you? 1) All about it. 2) Don't really care. 3) Avoid it.
Anyone who knows me knows I am All About it!
2. What's your favorite element of the Halloween season? Candy, pumpkins, costumes, or kids knocking on your door?
I love dressing up, seeing all the costumes and especially haunted houses.
3. Which candy is the one you always hoped you'd get lots of when you did your trick-or-treating?
Candy Corn, Blow Pops & Chocolate
4. What's your favorite costume that you had, either long ago or recently?
I don't know if it was my favorite, but in 7th grade I was a Christmas tree. (I will try to post a pic later). I remember getting a lot of attention from that costume and everyone singing "Oh Christmas Tree" as I walked down the halls
5. If you've got kids who are dressing up, what are they gonna be this year?
Cameron was Batman & Mitchell wore Cameron's Superman costume from last year. (Again, I'll try to post pics later).
The Random Questions process ~Choose one or all of the questions to answer. ~Either respond with a comment to this post with your answer or put up a post on your own blog for a full response. ~Don't forget to include any funny or interesting story to illustrate your answer in action. ~Be sure to leave a comment on this post to let us know where to find your post so we can come check it out!
Good-bye Grandma. You will be greatly missed. Thank you for raising such a wonderful woman who I am proud to call mom and has in turn raised an amazing son who I am so grateful to have as my best friend and husband.
Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections. God didn't promise days without pain, laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way.
Today is Mitchell's first birthday. This last year has went by too fast.
Mitchell is such a joy. He is loving, smart, cautious, observant, playful, curious and friendly. He is known to observe and follow his big brother's lead, occasionally taking control and becoming the leader. He enjoys music and dancing. He gets a big smile on his face when he sees his daddy (but whines/cries when he sees me - hmmmm).
It was Tuesday, October 10, 2006. Our arrival back at the hospital that we had been staying at the last couple weeks was bitter sweet.
My stomach was in knots and my head was spinning as we rushed down the never ending skywalk to the elevators that would take us up to the PICU.
I tried to control my trembling hand as I pushed the buzzer to announce our son was in room five, hoping that he had a more restful night than I did.
The automatic doors opened as I prayed that the ventilater was able to keep his fevers at bay and his heartrate below 200.
Turning the corner to his room, my legs were weak and I was sure I would collapse at any moment.
"Be strong, he needs you." I thought to myself looking through the glass doors at my miraculous baby boy who had just turned three months old the day before. He was so tiny, yet so brave. He was so fragile, yet so strong.
I hesitantly looked up at the monitor to read the numbers that had fluctuated so dramatically over the last couple of days. Numbers that most people wouldn't know what to make of. However, I knew all too well what they meant.
I was in a daze as I put on the yellow gown, white mask, latex gloves, and blue hat. Anxiously I slid the glass doors open and bent down close to his crib so he could see me, "Mommy's here baby, it's going to be okay now, mommy's here".
I was going through the motions. The same motions I had been going through for the past couple weeks since finding out my baby was in severe heart failure and would need the AVSD repair done sooner than originally expected to save his life. A surgery that had been postponed twice already due to extremely high fevers that no one could explain.
Not a day goes by that I don't think about all the children, families, doctors and nurses at Children's Hospital of Wisconsin as I know all too well the miracles that are performed there daily. I can't express enough gratitude to Dr. Tweddle and the entire surgery team who saved my baby's life two years ago today. God Bless You All!
We had a great trip. We spent time on the beach and in the ocean with friends.
We celebrated two birthdays.
We were without children. We were grateful for our alone time. We appreciated the warm weather. We relaxed.
We enjoyed the game - The Buccaneers beat the Packers.
We were relieved there were no flight delays. We made it home to our babies just in time for dinner.
Cameron tried to jump out of his chair when he saw me. I couldn't put him down for about an hour and couldn't be out of his sight for more than 5 minutes for the rest of the night. At least I know I was missed!
Before we left I had a talk with Mitchell about how he had to wait to start walking until mommy & daddy came back from their trip. He just grinned. The same grin he gave me when I asked him to stop getting bigger and stay this age forever.
Last night Mitchell took 15 steps!
I can't tell you how excited I was that I was there to see that! (Oh, and I don't want to know whether he did this for anyone else who watched him over the weekend).
Thank you to everyone who helped out - we REALLY appreciate it.
I am a Christian, a wife, a mom, a daughter, a sister, an aunt, and a friend. My name is Terri, I have been married to a wonderful man, who is also my best friend, since May of 2000. I am a mom to two great and very energetic boys. One of which happens to have an extra chromosome (Trisomy 21)