Base Camp

This man of mine.

We've been calling him Base Camp since I started doing disaster and missions work.  It's actually a nickname Shawn gave himself.

Someone has to hold down the fort, feed the pets and look after the children when I'm not able to take them with me, right?

We always imagined this would be work we'd do together in our retirement years. But when the opportunities arose for me, Shawn didn't hesitate to start sending me with his best blessings.  I keep telling him we'll still do this together.  There's plenty more work to be done, still.  

A few weeks ago when I heard Shawn refer to himself as Base Camp at church, I just hugged him.  It hit me just how much he really is Base Camp in so many ways.  I was filled with so much love for Shawn, and all kinds of warm fuzzies.

Shawn isn't just here when I return, having taken care of everything in my absence.  He's here when I'm here, helping me take care of everything when life gets to be too much.  Shawn is right beside me, on days when life is what qualifies as normal around here.  He is my rock, even when he needs to crumble too.

Yes, there are times, days, and even weeks we don't mesh, we don't get it right, we get off track.  It's not a bad marriage, just a bad day.  And it's okay.  We're okay.  We talk (we fight), we forgive, we love, we move on.

I love this man.  I'm so grateful for him.  I'm so grateful I get to do life with him, raise our boys together.  I'm grateful I get to come home to him and wake up with him.  I'm grateful we get to roll our eyes together at our boys, then roll down our hill with them.  I'm so grateful to just be with this man.

I love my Base Camp.  I love returning to home base, to Shawn's arms, to his kisses.  I love that he's always here and I know I can count on him.

My dearest love, thank you for everything, and all that you are.

Harvey

Hurricane Harvey hit Texas the same time reality was hitting here with Avery's seizures.

I just wanted to escape.  I wanted to run away, far away, as fast as I could, and leave it all behind.

I saw Harvey as a quick 'out.'  I didn't say it was realistic.

The kids were upstairs doing chores and playing. I sat on my kitchen floor in tears.  Okay, so it was more like a mini breakdown.  I told my friend I was going to pack the kids up and head out. I could throw Ezra in a backpack, put the older two to work, and we'd be of some use.  We've done it before!  I have valuable training and some skills, surely they'd find someplace to put us ("Right?" I heard myself trying to convince myself.).  Shawn could hold the fort down here.  I had no idea where we'd stay (Our car?  Like everyone else in Houston?), but I'd figure it out once we got there.  Thankfully, my dear friend had me talked down from my ledge before Shawn got home.  Seizures would follow us.  Autism would follow us.  It would alllllllll follow us.

She was right.  Thank God for those good, practical friends who speak with love, huh?

It was silly, anyway.

The next day I was able to help organize rescue efforts for a dog rescue when a levee broke.  This group hadn't been effected by the original flooding, but when the levee broke, they needed to leave, and leave fast.  For safety reasons, the sheriff's department wouldn't let them back into the rescue facility, and it was a mess. They did not have enough boats, crates and trucks for all the dogs; through social media, connections were made, word spread, and the dogs were saved.

A few weeks later our church sent a box truck sort of thing of donations to Houston.  Shawn and I did our part, and my help was enlisted with some other things for the donations.

I figured that was the extent of my help. Grateful for the opportunities, I closed the book on Harvey, took off my Disaster Responder hat, and put my Mom hat back on.

A few weeks after that, it was announced that our church was taking a group to Corpus Christi to work with the group I trained with when I was pregnant with Avery.  I tell him disaster response is in his blood.  

Shawn and I looked at each other.

"You're going."
"I'm going."

I signed up, paid my airfare, and I leave with my team on Monday.  I'm excited (intimidated, scared out of my mind), humbled, honored and blessed.  I can't believe I get to do this!

Yes, seizures will be here when I get back.  Autism will be here when I get back.  It will alllllll still be here when I get back.  And I'm sure I will be happy to be back to my own problems.  But I'm humbled to be able to serve God and His people in the meantime, and maybe talk another mama down from her ledge, too.

Not My First Rodeo

When I started this blog six years ago, it was as an emotional outlet.  It still is.  I have words in my brain and they must go somewhere.  I was a stay at home mom with a toddler and an eleven year old, pulling my hair out as I navigated Noah's newly diagnosed life with ADHD and Autism.  Drowning in my own depression, I was also homeschooling Noah after a disastrous experience with a private school, knowing I had to put him back in public school.  Life was not on an even keel.

I decided to call my blog 'Living in Left Field,' because the day Noah was diagnosed, they handed us a binder full of information and sent us on our way, "Congratulations!  Your son has autism, see you in three months!"  Shawn and I buckled the kids in the car, then stood in the parking lot just staring at each other (or perhaps into oblivion), shell shocked, even though those were diagnoses we were expecting.  We had also expected more support that day.  Noah was high functioning enough he didn't qualify for any therapies or support.  I'm sorry, what?  Finally, I broke the silence and said, "Shit, they just dumped us in left field."

Six years later, we still live in Left Field.  I don't know that we will ever live on an even keel, but we know how to navigate it a little better, and laugh with most of the punches.

Last week, we rode a similar rodeo.  As you know, we're now navigating the life of seizures with Avery.  Last week I heard, "Yes, your child has seizures.  No, we're not treating them.  See you in six months!"  Shell shocked, I couldn't think of a single question to ask.  I couldn't even think to open my notebook to look at the questions I had written down before in the weeks before.  I just sat there, next to my child, too dumbstruck to speak on his behalf.  I'm sorry, you're not treating my child?  Nope.  Wait and see.  Wait and watch.  I felt dumped right back in Left Field, but as I said above, we've never left, so there's that.

Avery and Ezra were happily playing in the hospital playroom, and actually playing with other kids really well, so I let them be while I gathered up the strength for the drive home.  Sitting there, I started talking with another mom, and learned more from her than I did the doctors.  She held my hand, looked me in my eyes and said, "It's going to be okay.  It won't be easy, but it's going to be okay."  I've said those very words to countless other moms, and I know both of us will continue saying them.

She told me the difference between epilepsy and seizures (the doctor had already said Avery does not have epilepsy, he has seizures), and why they often don't treat seizures, especially in kids like mine (and hers), especially at first.  Avery's seizures are not disrupting his life, or his sleep (that we can tell), nor can any of the tests prove they are happening daily/nightly, or several times a day/night.  Also, these meds are heavy duty, and can contribute to the behaviors and sleep issues Avery is already having, and even cause some of their own problems.  I also learned these types of seizures are often seen in kids diagnosed with autism, ADHD and other similar behavioral issues.  Interesting (okay, but WHY?).

Yes, it still scares the daylights out of me.  But, I understand it a little bit better.  If only doctors explained things as well as other moms do.  

So, we wait and see.  We wait and watch.

We wait and pray.  

Oh Mamas, Lean in, Hold On, Press Forward

Precious mamas, have you ever had one of those days for the books?

You know, when your youngest decides to scrap your 16 1/2 half years of veteran mom-ness and make it look as though you're just starting out?  No, really, this is NOT my first rodeo, I promise!  Ezra has decided to explore his independence recently, and he's become a runner.  Thank GOD for the linebacker-sized produce guy in Wegmans who finally clotheslined my kid, while everyone else ignored my shouts of "GRAB HIM" as I ran after him.  There have been other incidences that have had me relieved to be in bed at night, and Ezra hasn't been the only culprit.

My heart has been heavy recently, and there is so much on my mind, so much just really weighing my shoulders down.  My strength has just been sapped.

I heard a verse on the radio the other day, and the way the DJ explained it, my shoulders just immediately lifted--well, sagged from the lifted weight--and my heart felt a little lighter.  It was actually a physical feeling, as I whispered, "Yesssss" to myself in the car.  It was such a huge relief to me.

Colossians 3:2: "Set your minds on things above, not on earthly things."  Sisters, there are so many  things which are upsetting right now in our world and nation.  There are days when motherhood just gets the best of us. There are times when it seems life is just too much.   These earthly things--they are just mind boggling and strength sapping and shoulder-wearying and heart-heavying.

Set our minds on things ABOVE.  Indeed.

Yes, Abba does indeed care so much for us, and does not want us weighed down by these things.  He cares so much for us, He is already taking care of these matters.  How wonderful is it that we can trust Him so?  How amazing is it that He just loves us that much?  I can scarcely comprehend it!  On our most difficult of days, He has already traveled it ahead of us.

Lean in.  Lean in to Jesus on these hard days.  He cares so much for you.  He cares so much for the things you care about!  He loves you so much.  Allow Him to lead you.  You do not have to do this alone!

Hold on.  Hold on to the Cross.  Hold on to the Word.  Hold on--cling tightly--to Jesus.  These are our weapons against the enemy, these are our armor for our children.  Use them MIGHTILY.

Press forward.  Press forward strongly in motherhood as your ministry.  This is perhaps the most important ministry we will ever face.  Press forward for our world and our nation.  Press forward, and do not back down from the enemy.

These are our days, mamas.  Lean in, hold on, and press forward.

 It is our time to rise up, and hit our knees. 

One in Four

Imagine you are standing in line with at least three other women at the grocery store.  Now, imagine that if you have not lost a child due to miscarriage, one of those other women most likely has.

I am one of those women.

I am one of the lucky mamas... I've only had one miscarriage, and I have three healthy boys.

My daughter would be about 13 years old.

I did not carry Grace past the first trimester.  I hadn't even seen the doctor yet.  I don't have a picture of her.  It is purely supernatural that I know my child is a girl, and that she has blonde hair.  If you'd like to hear the story, Noah and I will sit down with you sometime.  

Top Print: "MisConception" by
thevisualminimal.com
Bottom Print: linktr.ee/letteredhope

Grace's loss is one I still grieve.  I do not believe the loss of your child is one you ever finish grieving, no matter the age of your child, no matter if you met your child or not.  In my heart, I know she would have been led a very sick, painful life.  I also know God spared her, and she is healthy now.  I was so very sick when I became pregnant with her, and I was on so many medications.  I carry a lot of guilt for the irresponsibility I had in even becoming pregnant, and for many years I beat myself up for what I felt was my part in my child's death.  I've talked a lot in my blog before about the anger and bitterness I carried concerning our struggle with infertility, but I also carried so much towards God for taking my child.  For quite a while, even as bitter and angry as I was about our infertility struggle, I felt it was a just punishment for my part in Grace's death.  It was a long, hard journey getting to where I am now, at peace with Grace being healthy and happy, even though I do not get to raise her.  Yes, it is possible to miss a child I've never met.  I miss her every day.  I miss the moments I don't get to have as her mom, and I try to not think about milestones (Homecoming prep shopping is hitting me hard this season for some reason).  Shawn, and even our boys, have missed out on so much, too.  I find myself wondering what she would be like, how we would get along, what kind of things she would like.  I also try to not think about her too much, but I'm her mom, so it's what I do.  

There is always the inevitable, "Three boys, huh???  You gonna try for that girl?" Sometimes I shut it down quickly, announcing that we already have our girl, depending on how rude the person is, other times I'm more gentle, but I still explain that our little girl lives in heaven.  It's a delicate balance, honoring my daughter's memory while also honoring my sons' lives.  It's only been within the past year that I now tell people I have four children when they ask how many I have.  It's a question I used to struggle with--I usually end up comforting the person if the conversation goes past that and it becomes awkward--I felt as though I was denying Grace's existence.  I always heard her little voice asking why I didn't tell people about her.  Now, I do.  I try to keep the conversation short and simple, unless Grace is the purpose of the conversation.

I do not share this with you for pity or sympathy.  I share this with you because our voices need to be heard for the sake of other mamas who feel they are alone.  Every day, in every setting, it is socially acceptable to discuss every form of cancer and other illnesses, to discuss every other kind of death, often times right down to the gory details--but no one talks about miscarriage anywhere.  Not even our churches are talking about early child loss!  It is completely socially taboo.  I do not know that I will ever understand why.  When I lost Grace, I was so embarrassed and ashamed I even hid it from Shawn for several years.  Our marriage was not in a good place when Grace died, and I was so ashamed, I was afraid he would blame me for her death just as I blamed myself.  It took me even longer to talk about her with anyone else who wasn't super close to me.  Now, I know she is part of my testimony for other mamas.  I must talk about her for other mamas who have been told to just move on, to just get pregnant again, they can always adopt, to get a dog or a plant--for those mamas grieving their losses who have heard all the tired lines.  Please, PLEASE, do not ever say any of those things to a grieving mother.  Do not ever tell her that at least she won't have to deal with potty training, or go through the pain of breastfeeding, or the terrible twos, or to be glad she won't have a moody teenager in her house now (just a few of the things I've heard).  Do you have any idea what that mama would do for any one of those problems you take for granted?  Word of advice--if you don't know what to say, please do not say anything.  Just hug her.  Hold on to her for dear life and don't let go.  And please, PLEASE, do not ever reject her motherhood; she carried and loved her child, she IS a mother.

Making it even more difficult for me, my doctor dismissed my loss.  It was tragic for me, but to my doctor, "these things just happen."  I lost my child, and he just dismissed her life!  Grace is not just "one of those things,"!  Precious love, neither is your child!  Much of society also dismisses my loss--clump of cells, fetus, loss of pregnancy, miscarriage, etc.  The early loss of a child is not something which shows up in a newspaper obituary, nor is there a funeral held.  Unless you've already told others you were pregnant, or you were already showing, no one knows you've lost your baby until you tell them, unlike the death of a person who isn't there at church the following week after he/she dies.  This is another reason so many mamas suffer alone.

Precious mama, if you have lost your baby, please--cry.  Cry as much as you need to, then cry some more.  You lost your child!  You lost your dream.  You lost a part of yourself, and a part of your family. Grieve.  Name your child, even if you don't if your baby is a boy or a girl--give your baby a name.  It may sound simple to some--of course you should give your child a name, while to others it may sound strange.  Please trust me when I say it does help to be able to refer to your baby by name.  And it helps your friends and family when they ask how you are doing, too.  A name gives everyone a reference point.  You are no longer referring to 'the miscarriage,' or referring to your child as 'it' or 'the baby.'   Talk to someone.  Anyone.  Everyone.  Share your story.  Do not hold it in like I did.  There is nothing to be ashamed of or embarrassed about.  There is nothing you did--and I know you are so tired of hearing that.  And I know you are just as tired of hearing there is nothing you could have done, but love, it is the truth.  Know you are not alone in this.  Know you are loved.   Allow friends and loved ones to minister to you; there are no burials with early miscarriages, making grieving even more difficult, so allow those meals to come in, allow friends to take you for coffee, or to bring it to you, allow them to take your other children for the day.  Allow yourself to be angry.  Please remember this, also:  Make these allowances, but when it is time, allow yourself to come back up out of the pit.  Yes, you will wonder how you can go on, and your marriage may even be rocky, but love, you must allow yourself to come out of the pit.

Precious mama, this is a painful time for you.  Allow yourself to be loved.  Allow yourself to be held.  Allow yourself to know that as painful as it is right now, there will come a morning when you will wake up and hurt just a little less, and you will smile when you say your baby's name.

You are loved, precious mama.  You are so, so very loved.

Saved by Grace

My Dearest Grace,
If you could only know how much I miss you.  We don't even have a picture.  I had a pregnancy stick once, with a line that disappeared.  We never even met you, yet we miss you with a constant ache.  We have a car meant to seat six, a table meant for six, a home meant for six, everything in our lives is meant for a family of six--our hearts are meant for a family of six--yet, you aren't here.  Every one of your seats are empty, save for your place in our hearts.

I didn't miss your earlier milestones so much because I was concentrating so hard on Noah's, and then Avery's (and now Ezra's, as well).  Knowing how precious life is, I wanted to make the most out of every moment for your brothers.  In the process, I need to make the most out of their lives for myself.  When you lose a child, you realize just how important and precious the children you have really are.

It's starting to hit home now, though.  We've missed out on a lot.  We didn't just lose you, we lost moments and memories and dreams.

Watching Noah go to Homecoming a few weekends ago, I realized I'll never have the chance to shop for dresses and make up and shoes with you.  How I longed to clasp one of my necklaces around your neck, adjust your dress, help you with your hair.  After pictures were taken, with tears cracking my voice and sounding like a crazy lady, I begged the other girls to please send the pictures to their moms, "Things like this are important to them."  I won't have the chance to hug you, remind you to be careful and have fun, and send you on your way.  It was like ripping a scab off a gaping wound, grief renewed.  I was happy for Noah, but oh, the pain ran deep again.

Your dad confessed he misses the chance to dance with you, or walk you down the aisle on your wedding day.  

Noah confesses missing the chance to protect you as you grow up.  He misses the chance to grill your boyfriends, and be your big brother.

Grace, even in your absence, you've taught me so much.  I've never even held you, yet you've made me a better mom, a better friend, and a better person.  You've given me a better understanding of so much, a different perspective of so many things, and a greater love for other mamas.

Your loss has taught me how painful questions like, "when are you going to have (more) children" can be, so they are typically topics of conversation I stay away from.

You are one of the reasons we understand how blessed we are.  So many couples with miscarriage and infertility as part of their story don't have the opportunity to include three (biological) children as another part of their story.  You are one of the reasons your brothers are hugged tighter, and held closer.

You are one of the reasons I pray so fervently for good relationships with my daughters in law, for good wives for your brothers, and if they are God's will, granddaughters (I'll take grandsons, too--now I know what to do with boys, finally!).  I want to be part of their lives, part of the moments I've missed with you.

We lost out on so much, but in the end, we have been saved by so much grace.  We have been saved not just by God's grace, but by you, our daughter, precious Grace.

Until we meet again, for forever--
I love you, always and forever, forever and always.
Love,
Mom

Well, What DOES Autism Look Like?

Ask my children, and they'll tell you what it's like to have to hold me back when someone says, "Well, he doesn't look autistic!"  As an autism mom, I feel it is my duty to properly educate this obviously ignorant person about autism, and ask what, exactly, autism is supposed to look to like.  Because apparently, once you've seen one kid with autism, you've seen them all.

I'm quite certain my kids have a ready-go distraction plan in place; Noah throws Avery a look while grabbing my hand and saying, "Let's go," Avery asks the easily distracted Ezra if he wants ice cream or a donut, Ezra starts yelling for one or both, I'm then distracted by the toddler's sudden need for a treat, realize that ice cream really does sound good, and away we go!  They're good, those sneaky kids of mine.

The problem is, this time, I'm the one who got caught up in this.

I watched Avery like a hawk from infancy, going through his  developmental milestones.  I watched him so close, I gave a whole new definition to the name Helicopter Mom.  I ticked things off in my head, I had checklists for him, and by 18 months, I felt we were breathing pretty easy.  I started to relax just a little.

I even remember the day Noah asked me if I thought Avery had autism like he did.  It broke my heart for so many reasons, and Noah's reaction to my answer ("No."), "Good, I don't want him to suffer like I do," absolutely shattered my heart.  Thank you Jesus, we're past that point.

I did continue to watch Avery, and I picked up on ADHD and some anger issues, we had him tested twice, he's been in counseling, but--autism?  It wasn't until the past two months that I've really started looking at him, considering it, and realizing this is the missing puzzle piece.

He's not a difficult child, I was just looking at things all wrong.  Avery, please forgive me.

It didn't look like autism to me.  Because I was comparing him to Noah.

You have to remember that autism is on a scale, that's why it's called a SPECTRUM Difference (we don't use the word 'disorder' in our house).  I forgot that.  I was paying attention, but to the wrong things.  Just because you've seen one kid with autism, doesn't mean you've seen them all.

So, what does autism look like?

Well, in our home, autism looks like this:

Yep, just your average, ordinary, everyday kids.