I have barely written here this year, and I miss this space. The truth is, I’ve had quite the vulnerability hangover for months now and every time I sit down to write something vulnerable here, I just chicken out. Perhaps that’s for the best though, at least right now. But, there is quite a bit going on, both mundane and meaningful, and I wanted to document it here, if only for my future memories.

• THANK GOD IT’S FINALLY SPRING. Seriously, I have never been so aware of how the change of seasons affects my mood, and my children’s moods. With the warmer weather (but not a billion degrees yet), we have been outside constantly, and am loving it. Charlotte got a new bigger bike, and Nolan learned to pedal, so they are zipping around the cul-de-sac hours a day with our neighbor besties. 
• I have been writing quite a bit over at Houston Moms Blog. Speaking of vulnerable, I wrote a piece a few months ago that got a lot of attention and inspired some really good conversation. It’s titled Why I Won’t Raise My Children in the Purity Culture That Raised Me. And, as I do, I have totally deep-dived into the topic since then and have already written part 2, 3, and 4 in my head (only half kidding). There are SO many layers to this issue and how it’s impacted my life. The good news is I’ve discovered I’m not alone- there is a whole community of people who are questioning the purity culture that raised them.
• I have a new nephew! Baby Leo was born last week to my brother Peter and his beautiful wife Janice. He was born 8 weeks early, so has a long road in the hospital ahead, but he is doing as well as he can being so premature. They are in Australia and have never felt farther away. I can’t wait to hold this little guy when they come visit next fall.

• Last weekend, I participated in my first political protest/rally: March For Our Lives Houston. I (a mother with small children) marched with my parents, my parents’ pastor, a 4 year old, a 16 year old high school student, and a good friend and her son who was the March coordinator for his high school. This little group represents the reach of this particular issue: people from all ages and stages of life are affected and want change.  The issue of gun control is really nuanced: we can debate all day long about the 2nd amendment and an individual person’s right to own guns, and which guns. Most of the people marching yesterday don’t want to take away that right- we just want laws in place to ensure that a person’s right to own a gun doesn’t supercede our children’s right to attend school without the threat of being murdered in their classrooms.I realized after the March that not only do gatherings like this give us an opportunity to exercise our 1st amendment right, but they also allow us to (literally and figuratively) bump up against people of all different walks of life. There were Christians, Muslims, and atheists, old and young, conservatives and liberals, students and teachers…all packed in tightly on the streets, yet walking peacefully. It was a really profound experience. Since one of my platforms has been getting people to think about what the term “Pro-Life” really means, I decided to make my sign with that in mind:
• 

 

• I realized I never wrote here about our appointment with Grayson’s Mito doctor to discuss his genetic results. We already knew the basics from our visit with his first neurologist, but found out that he is only the 12th person in the world to be identified with the gene defect, and the only in the US so far. He will still be treated at the Leigh Syndrome clinic, and we can still identify him as having Leigh Syndrome, although it’s not classic Leigh. We had the little kids’ blood drawn last week to test to see if they are carriers, and we’ll get those results in about 6 weeks. They were rockstars for the blood draw (poop emoji band-aids and lollipops helped a lot). 
• Grayson gave us a real scare on Monday. I was pulling into work and got a call from his principal that he had just had a seizure and that they had called 911. Apparently during the seizure, somehow his airway had gotten completely blocked and he had no oxygen and turned blue. Both the school nurse and principal told me later that it was the worst/scariest seizure they had ever seen (not the seizure itself, but the blocked airway). Thank goodness, when they paramedics got to the school he was breathing again and checked out ok. We took him home and I held him most of the rest of the day. He has been fine the past two days, but I know everyone involved is still really shaken up. Grayson’s PT wrote an amazing guest post for Houston Moms Blog today about her job and included Grayson in her post. 

How’s your life lately?

Today is Rare Disease Day- I should have done more to raise awareness, like change my FB profile picture or share facts about rare diseases all week. But, I didn’t, and my excuse is I’ve been slightly overwhelmed by the rare disease that we live with all 365 days of the year.

Ironically, this morning, on Rare Disease Day, we got some potentially huge news about Grayson and his disease.

Six years ago, in 2012, Grayson had a vial of blood drawn for a big genetic test. He was a year and a half old. At the time, we had no idea what Grayson “had” and all I wanted was for that test to give us answers. Tell me what to call it. Give me a name for the collection of symptoms my baby struggled with and a reason why he wasn’t meeting any milestones. It didn’t happen.

The results of that genetic test came back inconclusive. Grayson had some genetic variants (as do all of us) but none of them could specifically be labeled as disease causing. It was so disappointing at the time, but eventually we all but forgot about it. Grayson was clinically diagnosed with Mitochondrial Disease, and a few months later, after an MRI of his brain, with Leigh Syndrome. So we finally had a name.

At first, the diagnosis of Leigh Syndrome was horrifying- all I could focus on was the “terminal” label that comes with it. It took several years of processing and grief, but eventually I had peace, even comfortability, with the diagnosis. I made friends with other Leighs families, got involved in support groups, and formed excellent relationships with his doctors. And last year, 2017, Grayson had an amazing year. He went the entire year without a hospital admission except for a surgery he had in April. He was thriving in school, and making progress in therapy. We were coasting.

I’ve barely thought about genetics in several years. We had a diagnosis, Grayson was doing fantastic, so finding a genetic cause for his disease just wasn’t something I thought or really even cared about anymore.

A few weeks ago, all that changed. I had just dropped the little kids off at preschool and pulled out my phone. I had a text, email and voicemail from Grayson’s original neurologist that had ordered that genetic testing all those years ago. I hadn’t spoken to him since 2012 (we stopped seeing him when we started seeing the Mito specialist, who is a neurologist as well). The basic message was “New Findings on Gene Test- please call”.

I called his office and they immediately transferred me to talk to the doctor. If you are in the world of medically complex kids, this does not happen. You don’t just get put through directly to a doctor. But he had big news and wanted to be the one to tell me.

Basically, geneticists have reclassified one of Grayson’s gene variants. This variant was previously classified as benign, but has now been reclassified as disease-causing. So, this means that after 6 years, we finally have a genetic reason why Grayson is who he is.

This morning, we took Grayson to see the neurologist to go over the report and get a better understanding of what all this means. He used a lot of big words and it was hard to piece together some of what he was saying, but I think I have a basic understanding of the current findings. I googled the disease (Hypomyelinating Leukodystrophy Type 9) when I got home and the list of symptoms and the timeline when they show up is exactly what we’ve seen with Grayson. There are specific things like, “Spasticity, more apparent in the lower limbs” ,”nystagmus”, “onset in the first year of life”, and “thin corpus callosum”.

What I don’t know is what this means for what we call “it”. Does he still have Leigh Syndrome as well as this new diagnosis? I don’t know. We have an appointment with his Mito doctor next week so we will know more then. This will impact our other kids and their future reproductive decisions because there is a good chance they are carriers of this mutation. I also don’t know what this means for Grayson and possible treatments, or his life expectancy. I feel like this “answer” has now just flooded me with even more questions.

Regardless of what diagnostic label is on his medical chart, Grayson is still Grayson. Before anything else, he’s my son- my perfect 7 year old little boy who captures the heart of everyone he meets.

 

Dear Charlotte,

Happy Birthday! You are now a whole hand! This birthday has been much anticipated; we have been talking about you being 5 and your birthday for months now. We celebrated you with a unicorn-themed party with your whole school class and a few close friends at your favorite kids gym. You are most looking forward to this coming year because 5 is the age you get to go to Kindergarten- and now that countdown has begun!

Charlotte, at 5 years old, you are sugar and spice, stubborn, confident in what you want, but also tenderhearted and sensitive. You play hard, and rough, but also love delicate, beautiful things. You love to create, and spend hours each day at the kitchen table, drawing, coloring, and fastening things together. You love to write words, and I’ve never spelled out so many things in my life. You have really good number sense, and I hope that math is something you will love in school rather than struggle with.

You have definite tastes when it comes to, well, everything. We made it through the first few years of your life without you having much an opinion about clothes, but all that has changed. I pick my battles most of the time now, as you develop your own sense of style and autonomy about your appearance. You love music, and have a special love of early 90’s pop. You love bread, fruit and cheese, and only eat meat very reluctantly. Let’s just not even talk about vegetables.

Right after Christmas, you decided you didn’t like being upstairs all by yourself and chose to move in with Nolan and share a room with him. We got your bunkbeds and it’s worked out very well. You have always wanted to be close to your people, and sleeping is no exception. You and Nolan are quite the pair- best frenemies. The love you two share is intense, and leads to intense interactions all day long. We’re working on it. You love Grayson, but still struggle with questions about him and how he fits into your world.

Admittedly,  you and I butt heads a lot. I love you so so much but you also make me incredibly frustrated at times. I struggle with disciplining you but at the same time having a lot of grace for your big emotions. You bring up big emotions in me too, and we are both trying to figure out to handle those emotions in the context of our relationship.

Charlotte, you are beautiful, smart, funny and have so much potential to change the world. I have so much hope for you, and I hope this year is the best yet. Five!

Love,

Mommy

Photo Cred:: Nbarrett Photography

As he does every year, my dad writes all his grandkids letters from Santa on Christmas. These are some of my favorite words I read all year. 

Dear Grayson,

Well, here I am again! All I can say is “ho Ho ho”! You have had a really eventful year and I am glad I can leave you some gifts to celebrate.I see by your Permanent Record (I am one of the few who have access to it, given the naughty and nice analyses required by my work) that you have finished the first semester of the first grade! Grayson, what you have learned is remarkable and important, but it is those things that you continue to teach us that bring you honor and our appreciation. Your sweet spirit reminds us of how another recipient of tough circumstances, Mary, embraced the role that God gave her. Poor, with child, assailed by stiff-necked judgment, she proclaimed 

“My soul magnifies the Lord, and my spirit rejoices in God my Savior,….

Luke 1: 46 – 47 (have your parents read on through verse 55. Lots of good blog material there.)

 Later, another group of stiff-necked Pharisees asked the child she bore about a blind man.

“Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

John 9:1-3

 Grayson, the greatest gift I can leave you with is to remind you that you were also born to magnify God, and that the works of God are most definitely displayed in you. The world will not go backward. Light will shine in the darkness and the rough places will be made straight.  

Your biggest fan,

Santa
Dear Charlotte, 

Well, once again I have accomplished the miracle of making it down a chimney half the diameter of my waistline. It’s like the promise of Christmas. The Lord of the Universe breaks through impossible separation to deliver the ultimate gift of His presence among us.

Soon you will be five, so you are old enough to begin knowing more about me. I am certainly not the Lord of the Universe, nor am I Christmas, although some people would like to assign me that role. I am simply an expression of, as the Victorians used to say, “good tidings” during this season of celebration. That’s why I am also around for Thanksgiving, Advent, Hannakah, Kwanza, and almost every year-end sales event in America. My favorite is Christ the King Sunday, the last day of the church liturgical calendar before it starts again with Advent. That’s when we look forward to the fulfillment of the Christmas promise, when

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. Revelation 21:4

So don’t tell me we shouldn’t celebrate “The Holidays”!  

Charlotte, you are one of the smartest and most articulate children on my list. You are a keen observer of life and a proclaimer of what you see. My earnest wish for you is what you see is truth and what you proclaim is promise. There will always be those who fear the future and would like us to retreat to the past. But every word of our Bible tells us differently. As long I leave you these Christmas letters I will remind you: The past is darkness and the future is Emmanuel, God With Us. That is good tidings!

 Love always,

Santa
Dear Nolan,
I have divided my list of all the children in the world into three categories of experience: Rookie, Apprentice and Veteran. With your infant and toddler Christmases behind you, congratulations on your promotion to Apprentice! You are now able to begin considering some deeper concepts – like The Second Law of Thermodynamics. The Second Law is about what things happen spontaneously and what outcomes require work. One thinks about that a lot when looking down on the world from a flying sleigh.

The good news for you is that the usual state of your play room is not your fault. The Second Law tells us that the inexorable direction of the universe is toward disorder! Putting the blocks back in the box requires work, and they will never stay there. Tell your parents that it’s not a mess, it’s energy minimizing diversity.

Nolan, there are lots of people in this world who want nothing more than to put the blocks back in the box. They want to build walls, hoard privilege, and define who is worthy of playing with the blocks and who is not. And they are working hard at it.

The problem for them, and the good news for the rest of us, is that the inevitable direction of the universe is Emmanuel, God With Us. God sent us a Savior to break down the wall that separated us from Her and to proclaim that the first shall be last and the last first. Salvation brings us God’s economy of abundance where there is plenty for everybody, and where compassion and grace are celebrated rather than feared . If that were not true, I would not be flying over all those walls with a bulging sack every year!

So Merry Christmas Nolan! Take these toys and spread them to the far corners of the earth! Continue adding your robust voice to the choir of angels! Diversity is our advantage! God is with us!

 Love,

Santa

Read all past Santa letters HERE. 

A few weeks ago, I asked for suggestions on topics to write on, and my friend B left this comment:

I would appreciate any insights you have on balancing (hate the word, cause it’s not a thing, but can’t think of another at the moment) raising a child with special needs alongside your typical children. I don’t even know what I’m asking. Maybe conversations you have with C and N regarding how their roles and responsibilities will always be different than what you expect of G. Or the angle you take conversation wise when C or N realize G never really “gets into trouble.” Etc.

I’ve been thinking about this since she left the comment, trying to come up with some eloquent words or great insight on this topic. And the truth is, like so many other things in parenting, I don’t know.

I don’t know how to raise two children alongside their older sibling who will never be able to play with them, have a real conversation with them, or fully participate in all our family activities.

I don’t know how to explain to my little kids why their big brother can’t walk or talk. We talk a lot about how Grayson’s brain has a boo-boo, and his brain can’t tell his legs to walk or mouth to talk. They know he’s “sick” but how do I convey to a 4 and 2 year old that Grayson’s “sick” is different than when they get sick?

I don’t know how to balance parenting kids with such vastly different needs. I think the hardest part is very rarely can I “parent” them all together, at the same time. Logistically, I have to compartmentalize them into {Grayson} and {Charlotte and Nolan}, and one of those units is usually having to wait, or be by themselves. And Charlotte and Nolan get frustrated because getting Grayson changed and ready to do anything or go anywhere takes a lot of time. And when I’m playing with the younger two, Grayson is always nearby, but by himself. It’s kind of like living with kids but also having a perpetual newborn, in respect to the time and attention he takes.

I don’t know how to truly teach my younger kids how to have empathy for Grayson. Thankfully, we aren’t having the issues we were dealing with a few years ago, but the special needs siblings who live in my house do not behave like the idealized “full of empathy and compassion” siblings I read and hear about. I cut them a lot of slack though; they are still really little, and I know Grayson isn’t as “fun” as their other sibling. Neither of them bat an eye with his retching, drooling, and spastic movements- it’s what they’ve always known. I just try to involve them in as much of his care as I can- they fetch diapers and bibs, put his glasses on his face, and help his bus driver push the button on the remote for the lift.

I don’t know how to really explain all the extra help and attention Grayson gets. Having additional caregivers in our home has always been normal for the kids; Grayson has had night nurses since before Charlotte was born. We have therapists in our house 4 afternoons a week, plus nurses almost every night. And when we don’t have extra people, it’s mom and dad taking care of his every need, because he can do nothing for himself. That’s a lot of adults giving undivided attention to a child and then his younger siblings being expected to do a lot of things on their own. And of course, there’s pushback. And I know that Charlotte especially logically understands that Grayson cannot dress himself and she can, but still, to her, the difference in expectations isn’t fair. And she’s right- there’s nothing “fair” about any of this.

So yeah, I don’t really know what I’m doing. At all. But what parent does? Most days, I feel spread thin and that I’ve failed somebody. I love all three of those kids so much, but always worry if I’ve given each of them the individual attention and love that they need for that day. I guess as parents, in whatever circumstances we are in , we just do the best we can with what we know, and hope everyone turns out all right in the end.

After I finish #NaBloPoMo (Three.More.Days), the next installment of my 30 Day Challenge Project is to read every day for 30 days. Hopefully will reinstate a habit that I can carry on much longer than the next month. I used to be a voracious reader, but in the past few years, my reading has dropped off considerably due to competing time-sucks. Also, I know reading makes one a better writer, and I very much want to continue to improve my writing.

I picked December for my reading month for several reasons.

1. There’s more downtime and I’ll be “on vacation” (ha) for a chunk of the month.
2. Social media in December is hard for me (comparison is the thief of joy and all that…) so this will be a good reason to cut back for a few weeks and focus on reading more than scrolling
3. Amazon had some killer deals the past few days and I am stocked up (honestly, for several months).

Here are 11 books on my list to start to tackle next month: any must-reads I need to add?

The Hate U Give by Angie Thomas (I’m currently listening to this one on audio).

Just Mercy by Bryan Stevenson

Searching For Sunday by Rachel Held Evans

This Is How It Always Is by Laurie Frankel

Little Fires Everywhere by Celeste Ng

Blessed Are The Misfits by Brant Hansen

The Art of Memoir by Mary Carr

At Home In The World by Tsh Oxenreider

Leaving Church: A Memoir of Faith by Barbara Brown Taylor

The Disabled God: Toward A Liberatory Theology of Disability by Nancy L. Eisland

Elenor and Park by Rainbow Rowell (bought this on Audible months ago and haven’t listened yet)