We took the kids out for an afternoon at the race track and arcade. We had almost the whole place to ourselves (homeschool advantages!) which meant a lot of family versus family races! I would just like to note that despite Ceili Rain’s fear, I did not wreck and actually pulled ahead of everyone!
Plenty of time was spent at the actual beach! I borrowed a lot of Aunt B and G’s pics since I was back and forth with Tobin.
What are cousins for if not for burying each other?!
In September, we traveled to the Gulf of Mexico. Now, I grew up going to this beach every summer but our kids had never been. Actually, Zoe had been but she was six months old at the time and tells me she doesn’t remember a thing.
Aunt B and I convinced Papa that we all needed to go. That would be twenty kids and six adults.
And thus, begins a photo chronicle of our family get together on the beach. It was such a fun time. I think we all had a blast! So, these next three, four, or ten posts are going to be all about the beach! Up first, our family posed pictures.
These two girls were pretty close to inseparable the entire trip. Naturally, when I found matching dresses, I had to grab them up and they made sure they wore them for pictures!
I have a feeling there are going to be more of these as the years go by so we’ll do generic numbers for them. The boys enjoyed a good ol’ time with Mark at a local camping park. I had a blast with the girls and Tobin watching movies and doing nails but we forgot to get pictures!
This past spring, I saw a homeschool day offered for a museum in our state. We’d never been, so we decided to sign up for it.
We were pleasantly surprised to find a great museum based on the history of times from the Bible. We learned a lot and there was a lot of hands on activities that kept everyone interested the whole day.
Tomorrow Super Ems flies! Monday, Emmie will meet Dr. Steinberg and then have an MRI and angiogram. She’ll lay flat for 4 to 6 hours and will probably stay overnight in the hospital. Thursday, November 15th is go time.
In honor of our amazing superhero, I thought i would share a small piece of my heart observations that I wrote back in May.
The alarm starts blaring letting me know that it’s 7 am. The latest I should possibly sleep before we’re super behind on our seemingly never-ending busy days. My brain tells me to move but my body is begging me to stay still and rest longer. I roll over and see Emmie asleep on Mark’s pillow. As usual, she came sneaking in during the night needing our snuggles and she gently fell back asleep. I watch her quiet slow breathing and am reminded, once again of how precious this gift is. This happens almost every day. I am in awe that I get to cuddle with this almost four year old or hold her hand as she drifts off to sleep in the wee hours of the morning.
This morning, I decide to roll over and let my body win. I close my eyes but our superhero stirs beside me. Nope. No more sleeping today. She rolls over and with sleepy eyes and a groggy-waking-up voice calls, “Mama.” She waits patiently for me to roll over and look at her.
“Yes, baby.”
“I love you.” She reaches for my hand and smiles contentedly.
This little girl who has been through so very very much in such a small amount of time and she still smiles constantly in wonder and awe at the world around her.
She amazes me that at four years old, she can strut into a doctor’s office and pretty much have everyone wrapped around her finger as she smiles and offers up high fives and hugs. She has an insight into how to interact with everyone…humans and animals…that far exceeds her age. Maybe it’s her experience but maybe, it’s also how our God has equipped her to deal with all that is ahead in the life she has.
The sweet, unexpected “I love yous” are just the tip of the iceberg of what I have learned these past four years of living with a super hero.
Number One: All mornings should start out with love.
At parent observation class for ballet this year, she sidled up to each person in class…her friends. One friend was just not having it that day and crossed her arms and poked out her lip and looked at her mama for rescue. Eventually, Emmie moved on. A day or so later she said, “Mama, I sat by E in class and she didn’t like that.” I agreed and we discussed how maybe she should ask if she can sit by a friend before she does so. She agreed.
The next week, she remembered our conversation and told me she would ask E if she could sit by her this week. But then she went a step further. She drew a picture for her and made sure to present it to her after ballet. E’s face lit up bright as the sky and Emmie was thrilled she had made her friend happy.
She’s intuitive to the needs of others (most of the time…she still is very much a self-centered typical four year old) and wants to show love to those she cares about.
Number Two: Always seek out ways to make others smile.
With Emmie’s age, we are entering a new era of tests, pokes, and understanding. She’s become more aware of it all. We’ve always been honest with her about what is going on but that doesn’t mean that she isn’t scared or doesn’t get sad. On her new brace day this year, after two hours of fitting and waiting, she had to cry. And it was okay. Cuddling up with daddy we told her to let it out and cry it out.
Number Three: Sometimes life is hard and it’s okay to cry.
Days with a four year old are filled with questions. There is so much learning at this age. Emmie is no different than other kiddos her age. Her questions range from “What age are you?” to “Will you read me a story?” And if we’re discussing an activity, she lights up like a Christmas tree and says, “I so excited for that!” She truly is. She finds joy in going to the store, church, doctor’s offices. There’s joy in seeing a dog on a walk or a fish at the fish shop. She gets equally excited watching her siblings at awards ceremonies or swim practice.
Number Four: Find joy in the “every” things.
We don’t have a clue what her future is going to be like. But, we can look back on her life and how she has grown. God has taught us so much through our superhero as she grows.
Several years ago, Papa and Grandmere had a grandparent camp for our kids who were 5 and older. That meant it was for Zoe and Ace. Well fast forward through several busy summers, and we were finally able to plan out grandparent camps for our kids ages 5 and up again. We split them up into groups of 2 to 3. Ace got a solo trip which included a mission trip.
Three camp trips was a lot for one summer but so worth it. The kids were able to get special attention. Most importantly, they were able to spend quality time learning about their grandparents and family! We are so blessed to have two sets of parents who love our family and love on our family. Not only that, but both sets are fast approaching FIFTY years of marriage! That fact has not been lost on us and we definitely don’t take it for granted.
Well, here we are again. Standing on the edge of another surgery. If you asked us a month ago if we saw this coming, we’d probably be in denial. No, we’d say. Not at all. Our little girl is smiling and laughing. She gets into any mischief a strong willed four year old might touch. She fights with her brothers and sisters just like any other sibling. No. We’d tell you, our little girl is just another normal little girl.
But that’s not the case. Emmie’s scans were reviewed by a leading cerebrovascular neurosurgeon (a neurosurgeon who deals with the blood vessels in the brain) from Stanford University, Dr Steinberg
Our “normal” world came crashing down last Tuesday when we heard back from that neurosurgeon. The occlusion of the artery is almost completely closed. And while she hasn’t had a stroke yet, she is definitely at risk for one. His team also saw Moyamoya vessels. She needs surgery.
We’ve spent the past week on the phone with her local neurosurgeon, calling insurance, reading research papers, consulting other people we know familiar with moyamoya and NF. Everyone seemed to agree. Emmie needs an indirect bypass of her brain. They’ll take a temporal artery and place it on her brain. The prayer is the brain is thirsty enough to grow down into her brain and replace the artery that is closed.
Of course, we have spent the past week praying. And God has answered and re-confirmed for us again and again that this was the right thing to do for her.
Not only did we need confirmation that she needed the surgery but also about where to have it done. We are so grateful for her neurosurgeon that fixed her neck. He has been a wonderful doctor and loves our Emmie dearly. However, we have the opportunity to have Dr. Steinberg perform the surgery and feel that his expertise in moyamoya is going to be a great benefit for Emmie.
And that leads to where we are now. We’ve scheduled Emmie’s surgery for November 15th.
In true Emmie fashion, she is planning out all the things she wants to take with her on the plane and is wondering what car she’ll ride in.
Prayers through all of this are appreciated.
For I, the Lord your God,
Isaiah 41:13
hold your right hand;
it is I who say to you, “Fear not,
I am the one who helps you.”
Mark and I have been blessed to have a date night just about every week this past year. On one of our date nights this past summer, Mark asked what would help me get things done both on the computer and at home. We brainstormed and both decided that a few hours outside of the house to re-charge and work on stuff on the computer (blogging, ministry things, schoolwork/planning) would really help. We started in July. Ya’ll, it has been a definite attitude changer for me To have a weekly time to get away and focus on God first and then the other things I need to do has been nothing short of a blessing.
Mark had two Sundays he had to work this past summer. He has worked at the same place for over 16 years and this is one of a few times he has had to work weekends. His job is good but his co-workers are awesome. Anyway, so those two Sundays I loaded up our tribe by myself and headed to church. While in worship, I started taking notes on how our younger kiddos were “listening” and decided to help this listen better. We drove to church for several weeks after that going over the things we should do and the way we should act in church and then I made up these sermon notebooks. The little kids have a place to draw a picture about the sermon but can also check off key words our pastor may say. The bigger kids also have a space to draw or doodle (which is how I learn…visual learner trick that works for me) but they also have more space to take notes. Our pastor tries to print out an outline and there is plenty of space in their notebook to copy it out. I think I did it so that one notebook is for a full year…we’ll see (I really can’t remember). Anyway, I made a pdf of the notebook and sent it to Office Depot to print (because I have a good teacher discount deal. Thanks HSLDA membership!). I have them put the clear cover on the front and spiral bind it. So far it is working and eliminating a lot of distractions that they were having with each or others around them. If anyone would like a copy of what we use, I can send it to you! Just leave a comment or shoot me a message with your email.