We are Team Jack the Great. Since October is Down Syndrome awareness month, the Buddy Walk is a perfect opportunity to educate, communicate, and celebrate milestones.
Joe and I knew very little about Trisomy 21 commonly called Down Syndrome when Jack was diagnosed. One of Jack’s doctors started us off with basic information of Trisomy 21. After reading the first packet, he offered more reading. Absorbing the facts and statistics is only a portion of what we need to know. However, we knew we would need more.
Joe and I fell in love with these two precious baby boys before they were born. Loving them was the easy part. We prayed for guidance. We needed advice and hands on experiences to help Jack be the best. Joe’s niche is research and that is what he did. He found Grand Strand Down Society.
Grand Strand Down Syndrome Society offers knowledge and experience that match our family’s needs. My response to so many things was “I don’t know”. I didn’t know where we needed start. For an example I knew Jack would needed therapists, but I didn’t know therapists for infants. One day I received and email that said have you checked out these and named specific resources. I was not aware of any of them! I went right down the list making phone calls. One place lead me to another. We have made connections and contacts that is helping prepare us and Jack.
Currently, Grand Strand Down Society is preparing for the annual Buddy Walk. The Buddy Walk is a fundraiser to help raise awareness and monetary support for the Grand Strand Down Society.
We are Team Jack the Great.
I feel like I am about to go crazy! As a first time mom to twin boys, my life has changed drastically. I am completely open and ready for these changes. How do I balance it all?
My day is now starting around 5:30/5:45 am. Ugh..and I am not a morning person. I stumble to the kitchen and pull out the morning bottles to start warming up and maybe make coffee or grab a juice. Claire Belle needs her breakfast. Then time to pump. A pump session typically last 30 minutes. By this time one of the boys have already started waking up. I scurry to their room to change and feed him before he wakes his brother up. Still snuggled in his footie pajamas he doesn’t fully wake up making it easy to rock him back to sleep after he eats. A quick shower and dress. Now, the other baby is hungry. Feed, rock and back to bed he goes! Gotta dry my hair and do my makeup. I have to set up bottles to get them thru lunch time and wash the bottles from the night. I have no time for spit ups, walking the dog, and searching for my cell phone or keys. Did I even eat breakfast? Granny comes to watch the boys and chats. I can’t remember and I toss a yogurt or applesauce in my bag and run out the door. Off to work I go…late. I am late.
I go home during my lunch hour. It takes 10 minutes to get home. Claire Bell gets 5- 10 minutes outside before I can do anything. Evan and Jack are usually sleeping or eating so I check on them, careful not to bother them. Pumping and setting up the afternoon bottles is about 20-30 minutes. I have 5 minutes to grab a lunch. And, back to work I go. Late. I am late again.
After work I hitch my buggy and zoom back home. I am so happy to see those smiling faces. Claire Belle has to go out first. It is important for her to have some Mommy time too. She runs her laps and potties. As soon as she is finished she goes to the gate and waits. Then, I pump before Granny leaves. The boys mostly nap during this time. I start cooking dinner. At this point in the day I feel famished. As soon as I pick up my fork to eat a baby is crying. Dinner. He wants dinner too. I am exhausted and hungry. He happily eats and is ready to play, but not in his crib, bassinet, or chair and doesn’t want to be held so he screams. Now, this has disturbed the other baby who is hungry. He wants dinner NOW too. Claire Belle wants dinner too. She paces until her bowl is full. Joe and I eat in shifts. If he is home. He closes at the store 2 nights a week. I fly solo on those nights. After their dinner they get a bath or a wipe down. I use a little lotion and massage them, dress them in footie pajamas, and rock to sleep. I get in a TV show or two, some laundry, pump and wash bottles. I set more up bottles for the nightly feeding. Just in time for them to wake up hungry again. As I feed them I struggle to stay awake. After this feeding I go to bed too. I am beat. I get in bed and my mind wakes up. Did I brush my teeth? Did I get my clothes ready for work tomorrow? Did I mail the bill payments? There is another feeding in the near future. I need to sleep.
This is just an average day. There are no appointments or outings or visitors and those three factors and well…our entire tiny teams gets tired and cranky. I don’t have any complaints. I love this crazy busy life. How do you squeeze in a haircut? When do you buy groceries? What about doctor appointments for you? I make sure they get to their appointments. I just wonder to the moms out there, how do you balance it all?
Hurricane Hermine cause our office to close early today. The twins are asleep. So, no bake cookies should be a fun activity.
No Bake Recipe
2 cups of oatmeal dry
2/3cup of honey
2 tbs vanilla
3/4 flaxseed meal
1 cup peanut butter
1 cup of chocolate chips
1/2 cup peanut butter chips (peanut butter chips, nuts, m&ms you choose)
Mixed together, roll in balls, and refrigerate for 30 minutes
Our dream has been to own our own store for a long while now. We’ve tossed out ideas, but never making a move. Recently, while in a shop called Peacock’s Vintage Picks we were chatting with the owner. It just so happened that she had a booth available. This was the perfect opportunity for us to get our feet wet. Plus, we needed more open space in our home and a little savings couldn’t hurt.
Joe and I are hoarders/collectors. I tend to gravitate to vintage kitchen, vintage clothing and retro kitch. Joe’s style leans more to antique farm, vintage toys, and china. Most of our inventory actually is from our home……see what I mean by hoarders.
In our booth we have antique, vintage, and retro items. I have narrowed down my Pyrex collection. Joe has let go of his Nortiake collection. I am a sucker for re-purposing and up-cycling so seeing Joe taking a pallet and making a table or using a Singer sewing machine peddle base and creating a desk just makes my heart happy. We both love the hunt. It is a great feeling to run out to the flea market early Saturday morning before the family does and look. I find it therapeutic. It is also a great way for Joe and I to spend time together and conversate. We take both short and long road trips picking, searching, and researching items. It’s fun to learn about the things we find…..the history. We meet many people that share their stories and memories with us. We have developed new friendships. We’ve realized that usually we profit more in learning than in dollars, but that’s okay! This is our thing! And we love it!
If you are ever our way stop in and say, “Hey!” Visit awhile! We are at Peacock’s Vintage Picks in Latta, South Carolina. We are booth #8 named…Yelldazy
Joe and I are expecting twin boys. We are 7 weeks from our due date. We are very excited. Who would have thought a woman with PCOS, endometriosis, and one ovary would be so blessed? My prayer the day I was told I was pregnant was that my babies be healthy and happy.
Our pregnancy adventure has not been without bumps. Our first scare was with a blood test that was not even scheduled to happen. I received a call at work stating our babies tested abnormal for Trisomy 21 commonly know as Down Syndrome. We were told the test was not conclusive due to my age and the twin factors. The only way to know for certain that it was Trisomy 21 was both babies would have to be tested through amniocentesis. Joe and I decided right away to refuse amniocentesis and abortion. We have been to Maternal Fetal Neonatal for ultra sounds for months to monitor the babies. No markers have appeared. They have been cleared by the pediatric cardiologist with perfect hearts. Our babies were growing healthy. Again, my prayer was that they be healthy and happy.
As I was gathering my thoughts to finish the blog, our babies came early. During our weekly check up with Maternal Fetal Neonatal the ultrasound show Baby B’s umbilical cord was flowing in reverse. An hour and a half later through an emergency cesarean my baby boys were born. Evan Joseph was born first and Jack Thomas was born a minute later. Both babies hearts are perfect and their other organs are perfect. Our babies are healthy.
Jack has tested positive for Trisomy 21. He has an extra chromosome. He is healthy. He will have extra needs and will be delayed. There are things he will never do that Evan will. Most importantly, you should know he is my and Joe’s son. God has a plan for us. My prayers were answered He gifted us Evan and Jack. We chose to keep him. We wanted him. We love him. We are blessed. We are not without challenges and bad days. My babies are healthy and happy. We are the Brown family.
Foolishly, I let one negative criticism push me away. I asked for feedback on my blog and got a response that really hurt me. The reader didn’t want to see specifics on health issues. My blog is a lifestyle blog. I tend to write about exactly is going on in my life. At that moment I was dealing with infertility issues and explaining them so that my readers would understand. Some of my readers deal with the same issues.
I leaned on my husband Joe and my family. I have had conversations with friends. I am not going to let on feedback stop me from speaking what someone else needs to hear. I have I will be writing what I feel lead to. I appreciate my readers and if you are reading this thanks for not giving up on me.
Christmas Time. It’s that time of year when people are seemingly happy. Choirs are singing. Greeting cards are being written and mailed. People are organizing their family get togethers. Lots of people are decorating their homes and yards. Folks are shopping for gifts for their loved ones. Hearts are full of love, peace, and joy. There are our heroes deployed in active service who can’t be home with their families and friends for the holidays. There are folks here back home who are homeless and don’t have families to be with during the holidays.
Cloud Covered Streets passes out shirts, toiletries and a note to homeless people. Cloud Covered Streets is the street team of Paper Clouds Apparel, a small organic clothing company designed to help charities. The company is staffed by special needs employees. 50% of the profit sustains the business and 50% goes to the charity of the week they are supporting. Your note may be the smile that is needed. It my be the reminder that someone cares. Your note may bring hope.
Valiant Veterans is a group during Christmas that sponsors veterans with “hidden wounds” like Post Traumatic Stress Syndrome and others wounds that are not visible on the outside. One of their programs is Operation Christmas Card. It’s the mission of this program to love a soldier one card at a time. Write a soldier. Let them know their service is appreciated. Your note may be the comfort of home.
These are my picks. I encourage you to write, give, or encourage as you see fit. You may have a group of your on in mind. One note can help encourage them. Love and encouragement are free. Smiles are contagious. Memories are irreplaceable. Share a moment with ones that this time of year may not have the shimmer that yours does.
Merry Christmas! Hugs!