We get asked often about our kids’ responses from all of the things that Emmie has gone through with neurofibromatosis type 1. I think I understand what they are asking but all we know is this:
Emmie’s siblings absolutely adore her. It amazes me how, from the first time they met her, they have all been tender and caring and loving towards her (truth be told: that is how all of them have been with all their new baby siblings). When we found out Emmie had NF, they never wavered in their devotion and love and support. They understand (with wisdom beyond any I can explain) that we would give them the same kind of attention if they needed it (when she needs that extra medical attention). Any bump, bruise or fall…even now…leads to several siblings running to make sure she is okay. We have been open and honest with them, at their appropriate age level, about each thing she has faced. When they ask questions, we answer them honestly. They are Emmie’s strongest cheerleaders, pushers, supporters. I could not imagine Emmie not having them! In turn, they have taught our kids how to be compassionate to others. I believe the kids are learning to have empathy for others who may not be quite like them. They are learning that people are all created in God’s image even if they have bumps on their skin, visible plexiforms or severe learning issues.
Liam and I were talking one day and he asked me if I could have one wish, what would it be. I said that Emmie and others did not have to born with NF. Liam replied wisely, “But Mama, if Emmie wasn’t born with NF, then you wouldn’t have met all the amazing people you have. Maybe we should just wish there would be a cure for NF!”
So, when people ask me how the kids handle all of Emmie’s “attention” I respond absolutely truthfully, Emmie is the favorite sibling. Not our favorite child (we work not to do that) but she is definitely a favorite in the siblings. And when I say that Emmie has Super Sibling Sidekicks, I am definitely sharing the truth.
Proof is definitely in the pictures too! These are just a few I have managed to capture and don’t even come close to showing all of their love! That’s Emmie behind the book. Ceili Rain is a wonderful book reader for her. And a good napping companion. When Emmie fell asleep, Ceili Rain placed the blanket on her. Siblings make excellent pillows.
Staying warm together.
You have an awesome chance to be a part of Emmie’s sidekicks even if you aren’t a sibling! Donate or join our NF Walk team today! Our walk is less than three weeks away. Donations to our team go towards research to help end NF and get closer to our wish!
We had big plans one evening to take the kids to a frozen yogurt places grand re-opening. However, their re-opening was a bit more successful than they had anticipated and they were closed and completely sold out by the time we got there. Quick stop at the store, and we had our own frozen yogurt/ice cream gathering! Emmie loves to wear flexi clips and often wants to get a picture of them. Rite of passage. Liam learning to cut grass. Grandmere found this cute fabric and I had a chance to make it in to a dress! Emmie loved it.
Late one evening, Bryant was playing with the metal toy shopping cart. Pushing down on it, it popped up and met Bryant’s chin. Consultations via text and a quick run to get liquid bandages and he was all bandaged up. Another ER stitch avoided.
Since Zoe finished her orthodontic adventures, Josiah and Ace were evaluated next. Josiah had a tooth come out prematurely and, as a result, the other teeth moved forward. He won the next round of braces because he needed to make room for the new adult tooth.
In June, we found that Facebook now has a fun camera feature and the video of our bunch using it were too good not to share.
Okay, so I got in on it too.
In June, Ceili Rain asked for me to break out the sponge curlers and get to work on her hair. Emmie couldn’t wait to get in on the action. I was sure she would take them out, but she left them in the whole night!
Two years ago today, we walked into a hospital kissing and hugging our little 15 month old daughter closely. It would be 8 more long months before we could feel her cheek against our lips or her head resting on our shoulders. After this day, two years ago, six of the longest and hardest days of our lives followed followed. We watched our daughter, lay in a bed weighed down trying to stretch her neck out to gain her just a little more time before spinal fusion surgery. Mark and I were on the road twice a day swapping up our time between her and the rest of the kiddos and seeing each other only briefly between tag teaming.
I praise God for his protection and provision over those six days, those eight months, and these past two years. We have seen His hand move over and over and over.
And Emmie, well, this was her two years ago:
She sat with me in church humming the hymns, trying to do the Scripture memory and cuddling sweetly as she slept. She ran down the steps from Sunday school and placed her head on my shoulder when she was tired. Have we kissed those precious cheeks that we missed two years ago? You bet we did! She laughs. She plays. She fights with her siblings and has normal three year old demands.
Our unstable 15 month old old has turned in to a very confident, often silly, and fully loving three year old. We praise God for all He has done!
Don’t forget about the NF Walk! Join Team SuperEms Sidekicks or give and help us raise funds to fight NF through the Children’s Tumor Foundation.
We had two boys decide to join the summer swim team this year! This was our first year on a team and a really big learning year for us.
Liam did great and showed some major improvements in sportsmanship, diving and swimming in general. He actually won the award for most improved in his age group! And he won several ribbons for relays and backstroke (which proved to be his strongest race)
Silas loved every second of swim. He improved on his times for all races and declared that the butterfly was the best stroke. He won several ribbons for relays and freestyle and also a couple of heats in backstroke! His year end award was “Most Excited to Swim.”
There is a dad on the team who can make magic with sharpies! The boys called them tattoos.
We’re excited to see what next summer holds for these two and, hopefully a couple of other kiddos!
Our first meet was super long. And all of us felt it. Mark and I quickly realized staying for an entire meet did not work for any of us!
We are in a great church that really encourages leadership in the family. Mark has definitely been challenged and stepped up to lead our family closer to God. It’s a sweet blessing that he has baptized one of our kids and now, a second one.
Liam made a decision to follow Christ a couple of years ago but wasn’t ready to follow through in believer’s baptism until recently. I can’t explain what a blessing it is to watch two dads baptize their sons as a public profession of their faith in Christ. Liam decided before he was baptize to just start the process and dunked himself…hence the reason he was already wet. Our pastor is to the right of Mark giving a brief explanation of what it means to be baptized.
My oldest niece graduated from high school ya’ll! Oh dear, I feel old. She is a beautiful young lady who is going to do some pretty amazing things! I can’t wait to see it all!
Aunt Yaya with her best friend, K, and my niece J.
K has been like a second mother to J. I love seeing my niece getting all the love!
After graduation, we got to spend a couple of days with Grandmere and Papa.
And I met a little chipmunk as we left!