Miller goes to school!

This week, September 15-21, is Mitochondrial Disease Awareness Week. It is “celebrated” globally to educate and increase awareness about mitochondrial disease. I encourage you to wear green, the international color of mito (and Go Hawks!), and help bring awareness to this disease that is quite a bit more prevalent than even I realized. I read a statistic yesterday: more children die from mitochondrial diseases than childhood cancer. That’s shocking. Josh and I are big advocates of the American Cancer Society and will continue to be, but it’s such a wake up call that our son is battling something and there’s little to no research being done to help him or others like him.

I want to give a shout to my girl Katie Spencer on being bold this week as she steps up at the school at which she teaches to do a mito announcement this morning. You are #BeckettStrong, sister.

Fact: Every 15 minutes a child is born who will develop mitochondrial disease by the age of 10.

So let’s wear green and help to change those stats by bringing awareness to all mitochondrial diseases this week. And if you do, would you send us a picture of you in green? It would mean a lot!

Now on to the fun stuff — MILLER IS GOING TO SCHOOL!

We transition from an in-home sitter’s care in early summer when it stopped being the best situation for him. We hired a nanny to come to our house a few days each week and y’all – she’s awesome. Miss Taylor may read Miller better than his own momma! She can get him to do things we can’t and loves on him so dang much. She is a large reason he’s feeding himself so well these days and his overall well-being.

VIDEO: Miller using a spoon thanks to Taylor

She’s a senior at Hardin-Simmons and thankfully plans to stick around after graduation. We hope she can love on Mill for years to come!

For about a year, our plan has been to send Miller to what is called a PPCD, Preschool Program for Children with Disabilities, within Wylie ISD after his third birthday in November. We’re a little anxious about him around so many kiddos during cold and flu season, but we agreed early on we would give him the most “normal” life possible, not keep him all to ourselves within the four walls of our home. So we’re going to take it one day at a time and pray it is a good fit that helps him grow and get stronger in every way. We’re told they’ll transition from a private classroom to inclusion with the general education pre-school students throughout the day and are excited for the socialization. This is big – inclusion. The last thing we want is for Miller to be isolated and unable to play, learn from, love on, and simply engage with other kiddos his age. He gains so much from the interaction and we very much want to see that happening throughout his school experiences.

Being so concerned about the potential illnesses he could/can contract from school, we decided to test the waters at Beltway Park’s Mother’s Day Out (MDO) two days per week. In our eyes, this is serves many purposes:

• Starting in the warmer months puts less strain on his immune system and allows him to acclimate.
• He can get used to going to “school” for the majority of a day.
• And we can assess his needs with caretakers outside of family.

He started September 3rd! I toured the school and met with the administrators prior and felt God’s presence all over it. The class he’s been assigned has a teacher with an affinity for special needs individuals; one admin has an adopted son with hypotonia (low muscle tone) and has dealt with similar issues as Miller until he started walking at 22 months. He still experiences weakness when ill, as we have to watch out for, and she wholeheartedly understands our concerns for keeping our boy healthy. She explained she believes it is part of the church’s ministry to include all children and very much wants to create a safe, beneficial environment for our boy.

His teacher has custody of a special needs family member and cares for the special needs children during Sunday School. What are the odds? We tried Sunday School first. We figured an hour is a great starting point, and it was! He went to a class they call Kingdom Kids – isn’t that great!? Way more accurate than special needs if ya ask me. 🙂 We’ve taken Miller into the sanctuary with us at church up until this point for obvious reasons – his safety, germs, the unknown.

Of course we have concerns about his safety, his nutrition while in care, and how he can interact and participate, but we’re also very concerned with making sure he does not monopolize the teachers’ time so that the other children receive the same care and attention. I made this concern known to both the administrators and his teachers and asked them to keep us abreast of any issues they experienced. We want very much for him to go to school in a typical environment, but not at the detriment of other children. When I reiterated this to his teachers on the second day of school, their response was this: “He deserves to be here just like the rest of these kids. If something comes up, we will assess it and figure it out with you. We would never tell you he couldn’t come back!” WATERWORKS. This momma couldn’t hold back the tears. We couldn’t have asked for more!

And the verdict is in: he loves school! Since our first trial, he’s been to two full weeks of MDO and an additional Sunday. He loves every minute. As soon as I get him in his walker at drop off, he starts high-stepping to get in the door and doesn’t wait for me to check him in – he’s on a mission to see his friends! I would venture to say school and Mickey Mouse Clubhouse are his top two priorities at this point in life. All of the teachers and staff have been nothing short of amazing at Beltway South, and Mrs. Darlene is at the top of that list. Each time I go to pick Miller up SHE THANKS ME for allowing her to watch him and for trusting him with her. He is in the very best hands. Yesterday morning I was able to sit through the entire church service, sipping my coffee and taking sermon notes next to my friend Patty. (Josh is out of town.) Mrs. Darlene told me Miller inspires her and thanked me AGAIN for allowing him to come. Is this real life? If not, don’t wake me up!

Also, a couple girls have been extra sweet to him, but he seems to have a sweet spot for a little girl who happens to be the director’s daughter. What a rebel. Whenever we ask about the others in his class, he smiles so big his face might break in half and gets all shy when this girlie’s name is brought up. I can’t even with him. And I love it!

Thank you all for cheering on our boy as he takes on new adventures and experiences new things. We are grateful for your prayers, precious comments, and support. Don’t forget to wear green and send us a pic this week! #gogreenformito #gogreenformiller

Love,

Josh, Jac and Mill