The Secret of Living

Love, Mami

Dear Robbie-Who-Should-Have-Been,

I miss you.

I don’t know why I miss you as you should have been, when I have never known you other than as you are. I love you so much, just as you are. Every word – hard fought for. Every hug – a learned behavior. The glint of impishness in your eyes. Your laugh. Your joy. I am so grateful for what we have. But I still miss how you should have been.

Right now, I am acknowledging to myself that it is okay to be sad, to grieve, even to wish. And I will never stop praying for a miracle… as long as I remember to thank God for what we have. I look at you sometimes and see a glimpse of more, things that remind me of your brother and sister. I enjoy being with you, even when I am sad. And I am going to try harder to have a loving fun relationship with you, accepting the limitations even as we push on the edges of the envelope of your life.

It is truth that your life’s story is still being written. It is truth that we do not know where your story is going. We only know where it has been, full of surprises. I am smiling now, still sad, still grieving, but also full of joy.

I love you, my Robbie.

 

A nine year old's party

This is a post from my original blog (also called the Secret of Living; it's been archived and I love that I can see these glimpses of the past in the posts about the children.). It was originally published in July 2005. In honor of my daughter's 26th birthday yesterday, I present one of those glimpses.

A party report.

The birthday girl wore her new denim skirt with very fancy and pretty belt and a new hot pink stretch t-shirt, and white flip flops with flowers on them.  (Mami notes that I love her outfit, it was very conservative, yet trendy.  Very lovely too.)

4 girls came to the party.  They got to pick out a natural canvas apron that I had already put an applique on, and then got to decorate the apron with fabric markers.  An old science fair display board proved to be very useful as a table protector while doing this project.

The menu was mini-lasagnas, carrot sticks with ranch dressing, and fruit kabobs (fruit salad on a stick).  They made their own lasagnas (noodles and meat was already ready), their own fruit kabobs, and they got to peel the carrots, which I then cut up into sticks. 

Of course, there was cake.  It's an essential food group at birthday parties, right?

Overheard by parents:  "This is one of the funnest parties ever!!!"

Ah, sweet success.

Best of all, the birthday girl loved her party, and having her friends over, and above all, her new scooter.  A Razor original scooter, in blue.

Bullets

In the time-honored tradition of writing after a long interval, I present Bullets, a list made with bullet points. 

• Summer - Summer is hot in Louisiana. Every year you think you have gotten used to living on the sun, but nope, it's still too hot. After 19 years of summer here, I have to say that it is usually my least favorite season for temperatures. This year, weather is trying to burn us alive. I have almost gotten used to temperatures that say 103, feels like 114. But only if you realize that when I put almost, it is actually a complete lie. I will never get used to that. 
• Summer - Summer is still a lovely season. I decide what we are doing on a particular day and then I put it on the schedule. The schedule is a miracle. I have a weekly dry-erase calendar on the refrigerator, and every day I put something in the morning, LUNCH, and something in the afternoon. Occasionally, there is something in the evening too. For example, today said Laundry, LUNCH, and Vet, Stores. Very loose and very easy to write - and the best part is that if it is on the schedule, I just say, "Rob, it's time to help with Laundry!" and he comes fairly quickly and helps. Or I say, it's time to get in the car to go to the library, and voilà! - with no argument - he is on his way to the car.  To repeat: The schedule is a miracle.
• Summer - To my complete surprise, I have not gone to the pool at all this summer. I am really not sure why not - except it is too hot on the surface of the sun. I am planning on changing that, but not this coming week.
• Summer -Rob is going to camp next week. Without us. Yeah! Also, we now call Robbie three names: Robbie, Rob, and Robert. * No idea why. Sometimes I ask him what he wants me to call him today - and he picks one. I never know which one he will say. It's kind of fun.
• Life - I'm still here. Surprisingly, nobody knows how I'm feeling lately, including me. Except God. He knows. That's good enough for me right now. 
• Rob - He is doing okay. Still go to a million doctors (okay, just 5 or 6) and take a lot of medicine. Cross your fingers because we are in process of weaning him off the LAST constipation med he is still on. After how many years (too many), it looks like that problem is solved. We are having to pause the weaning process for a while because of camp and other things, but by the end of August, it should be gone. Please. 
• Other Rob related things -He was approved as disabled by Social Security and is receiving SSI and Medicaid as a secondary insurance. Of course, 3 months later, I received a notice that he had turned 18 and had to be reapproved (spoiler: He was already 18 when he received Medicaid.). I am hopeful that I will be moving on to the next item on my list for the "Future."
• The "Future"- there are some people on this earth who think they can ask me some variation of this question: "Have you thought about what will happen with Robbie when you.... um... die?" Unless you are someone who really needs to know what we are considering (and to be honest, if you have to think about if you need to know, the answer is no, you don't.), I usually say, well, plan A is to not die! (while smiling)... (and because I am usually a nice-ish person, I will continue talking...) and we are working on the details of plan B or C. Only one person dared to ask what those details are... and I said, well, I don't like to talk about this much. Is there a particular reason you were wondering? 
• Inside, I am sometimes often more than occasionally not a nice-ish person. Thoughts include "Are you volunteering to make sure that he will be okay? Are you going to help us plan or are you just overly curious? Are you going to... Never mind. I can't think about this, because it is a depressing topic, because you know what? We will be dead! But again, God knows. And yes, we have a plan that we are working. Still on plan A of course, because you know what, we are alive now. 
• And that's it. If I continue, I may get into something more depressing and I try to save that for my therapist and/or God. 
• Happy Summer!!!

*There is also a myriad of other names, which are not actual real names or nicknames. Current favorite is Buddy and Bud, but that is because I still call him Baby and he is very not a baby. (I know that he is always going to be my baby, but that's not the same as calling him Baby. Plus I am fairly sure he doesn't like being called Baby...)

Rest

I slept so well last night. 

I’m not home right now. I am on one of my favorite parts of the year - a mini retreat by myself. K and Rob are at home and I am relaxing and praying and reading and playing and sleeping. The sleep is the best part. I don’t worry. I don’t hear a noise and think - Rob is up. I don’t worry about him because I am married to a man who is fully involved with his care. I know more about some things and he knows more about other things but either of us is fully competent and capable in taking care of what needs care. 

What do I hope to gain from this retreat? While the primary reason is rest and a mental break, I choose what I will do and what I will focus on. I only brought books that I am trying to read, and books to read that I’ve read before and will be able to keep relaxing with.

3 books, topical memory system workbook, some supplies for journaling, along with a notebook, and one of the Finders Seekers mystery adventures that I haven’t had time to get to (My eldest gave me a subscription for many months for these during the beginning of the pandemic - I finally had to ask him to stop because I had a backlog!).

Of course, that’s the before pic. Here’s the in-progress pic:

I just started Waymaker by Ann Voskamp. I can tell it is going to take me a while to read - mostly because I keep stopping and thinking about someting I read. Right now, that is this paragraph: 

Life is never made unbearable by the road itself but by the way we bear the road. It’s not the hard roads that slay us; what actually slays us is the expectation that this road isn’t what we hoped it to be.    

  — Waymaker, p.11 (emphasis added)

What are my expectations? What were they and how have they changed? What truth do I need to learn about my expectations? There are just so many ways I can take this to learn and use to help me on my path with God. And that is a wonderful thing! The alternative is to stand still and wallow in hard things. It is better to keep walking! That is part of what I am doing this weekend — taking time to really look at where I am, and where I can be with God. He is always faithful, and I need to walk with Him and talk with Him, and remember that I never walk alone. 

Words

You know how you wake up in the morning and go into the bathroom and catch your reflection in the mirror and go whoa that is some horrible bed hair. No? Just me? okay... but seriously this morning I woke up and when I caught my reflection (note to self: find out where that phrase came from)... I said WHOA. It was the most spectacularly worst bedhead of all time. At least for me. I almost wish I had taken a picture. Almost. 

 

In all seriousness, I know why it was incredible. It is because I was tossing and turning all night which is a sign of something bothering me... or caffeine... or maybe not enough sleep for week. Said week was last week with spring break and Robbie managed to completely flip his sleep schedule. He wasn’t very happy with me when I started getting him up earlier and earlier and keeping him up. Poor guy. “Night-night?? please?” I can’t blame him but it wasn’t working well for me either! If Robbie is up, then one of us is up, and I was solo for much of the week, so that would have been me. Which reminds me…

 

Rob was very mad at me recently, though it was his fault. You see... I knocked on his bedroom door because I needed to talk with him. I knocked and asked if I could open the door. He said yes.

NO. He should have said no. He was changing clothes and had a shirt and was finishing closing his pants and he said NO. go away. pants... ON. and I quickly turned around. Disclaimer: this was a completely PG moment with no inappropriate visuals. But he was definitely mad.

Being a SN mom, I went with the moment and told him not to say YES next time. Instead, he should say Wait. Then I forgot to say what I was going to say. Typical.

Also, I need to remember to ask him to open the door and then wait until he opens the door himself.

There is a lot of waiting in life. Wait in line, wait at the doctors or the pharmacy, wait for an answer to prayer... strike that - wait for the answer that we want even if in the end, it isn't the best answer for us and we realize it later.

I pray daily for healing for Robbie. I have prayed for healing for most of his life. And last month he turned 18 years old and while there has been progress... slow painstaking progress... he is still so impaired in his communication skills. I used to say please heal the autism, but the spectrum is not what I am feeling so desperate about lately... so sad and tired and dreading the future (see: tossing and turning bed hair). It is the lack of necessary communication skills. He cannot text or write or talk very well. And yes, I hate this bubble of silence and I am always left wondering what he thinks about all of this.

That said... his communication skills have improved and I did see a big improvement with the response he gave me. Where he once would have been extremely upset but not communicating that verbally in any way, he used words to say... No. Go away. Pants... ON!

He used some words. This is what I pray for daily. For spoken or written or typed or even on his AAC (Words for Life on iPad). 

Words. Here are some words from me.

Another tap, tap, tap… I’m writing again.

I want to write! And I am writing! After months of no desire to put words on a page, I am writing again. 

Robbie returned to in-person school this fall, after being vaccinated for Covid last spring. We haven’t had covid, may it stay that way, thank you. he continues to deal with a myriad of health issues, but we have made MUCH progress. For anyone who reads this and has an older kid with autism, YES, progress can still be made!!

For example, Robbie is getting better and better at all those pesky constipation issues. After years of washing laundry daily, we are finally moving into a normal schedule. I had to put his bedding on the schedule to be washed because he is night dry and I realized I hadn’t washed his sheets in a long time, at least a month, possibly two. After washing it daily and then weekly and then less frequently, it crept in and surprised me. Celebrate with us! 

Magnesium proved to be the last component we needed for Robbie’s migraines. He still takes preventative medication (a beta blocker), and we are very careful to ensure he gets enough water daily, but the last time we needed the rescue med was about 6 months ago now. And there have only been a couple bad headaches in the last 3 months. AND and and and…. last time, he didn’t have a fit when he started hurting. Instead, HE TOLD ME!!! “Head hurt”, he said. !!!!!!!!!!!!!!! Amazing.

I spent most of 2020 and half of 2021 being his at-home teacher. I had great help from his school teacher and his therapists. We did virtual speech, mostly in-person OT and APE, and on-line ABA. I also spent the first half of 2021 working on getting permanent and continuing guardianship for Robbie. That wasn’t fun, but now we have paperwork that will allow us to continue taking care of him and making the necessary decisions. He isn’t able to make those decisions. If he ever is able to… then we’ll go to court to reverse it. But at this point? Not possible, and not likely.

I am doing okay, slowly finding my way back to a deeper relationship with Jesus. I still talk with my counselor 2-4 times a month. And I am grateful for the lessons I’ve learned about myself and about my faith. Since I am starting again, I want to share the verse that I used to title this blog so many years ago:

I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.                               Philipians 4:12 (NLT)

Say hello in the comments, and I’ll be back to say hi to you as well!

Turn Back the Clock

I had something in mind to write for today. Unfortunately, today went downhill quickly, with a headache for Robbie while having distance Speech therapy with our school SLP. 

Somehow we made through the have-to-do list and I decided that I would type a note tonight.

Headache recurrence or headache #2 means I am currently praying for relief for him. I am remembering our sweet little boy and wondering how tonight would have looked. Would he be in band? would he be in the CatBox cheering for the football game? Would he be driving a car? 

Robbie, age 5

Time to.stop.this train of thought... Woulda coulda shoulda. is not what is. Tomorrow we will do something fun. Maybe bake or I don't know.

Right now. I will settle for pain relief. Anything else can wait.

Longest

There are so many words in my head and none that want to be written today. This is the longest week of the longest year ever. 

Whisper, O Lord, your peace to my soul

Peace is something that I am not good at achieving.  The big problem is that I keep trying to achieve it, as if it is an accomplishment. It is not something I can do. It is listed in the fruits of the spirit (Love, Joy, Peace, um.... I can hear some of my past small group leaders saying, c’mon Tracy You can do it!... oh yes, patience, faith, gentleness, and self-control. Checks Galatians. NOPE.) Let’s return to the source instead. 

²² But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness,²³ gentleness, self-control; against such things there is no law.

       Galatians 5 :22-23 ESV

I know this verse. I’ve learned it and relearned it and forgotten again. It is time to put a notecard up in my kitchen! I need this verse. I need them all. But right now, I’m writing about peace.

I always have a lot going on in my life. If you’re new here, this is the backstory in a nutshell. I am a special needs mom to Robbie (16, moderate to severe autism and other things), wife to K, mother to two adult children making their way, Christian, friend, and depressed person extraordinaire. Wait. Strike that. ... friend, and depression warrior, fighting the battle daily with the weapons I have been given by the Lord!

Pretend I have inserted a warrior picture here. I am not actually going to do that.

What I will do is say that with all that is going on, I try not to talk about some of it most of the time. Robbie is at times... dare I say... difficult. He is in virtual school and his team is wonderful but the day to day grind of school life with his therapies and moods does wear one down occasionally frequently at times. And add in the weight of the pandemic and the election and my ankle pain and you have one seriously tired woman of God.

I am avoiding social media for the most part right now. I don’t watch the news. I am trying to stay on an even keel. I am working hard at it. Wait. Full stop. What am I saying???? 

Time to return to what the word says. I can NOT accomplish peace on my own. Ever. Not real peace. Real peace is something we can accept from God. He already gave it to us.

²⁷ Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.

John 14:27

There are many other verses about peace, but this is the one I return to. This is Jesus speaking at the Passover supper before his arrest and crucifixion. He gives HIS peace. Not as the world gives... not with money, or things, or promises, or good things happening in our lives... but right before He was going to die for us, He gives His peace. 

I do not believe that true peace is going to happen for people based on who is elected. There will be good times, and bad times, and horrible times, and wonderful times, and all I can do is reach out and hold onto the One who gives peace. 

I’ve been listening to “It is Well with my Soul” on Youtube. Different versions, so I am not going to link to any of them, but I want to highlight a couple of verses.

The first verse is familiar to many Christians:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

Horotio F. Stafford wrote this song in 1873. If you don’t know the full story of when he wrote this song, you should look it up. It was written at a very hard time in his life. To be able to say, no matter what happens, it is well with my soul, and to write this song for all of us to share in - what a gift. 

I can breathe deep and sigh as I listen to this song. I feel stress leaving me and I can pray. It is the fourth verse that means the most to me:

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

Amen, Lord. Please whisper your peace to my soul. I ask you to open my mind and ears so I can hear it and receive it. I ask you to open my heart and spirit so I can receive your fruits of the spirit and give to others as You have given to us. It is well, it is well with my soul. 

 

The One Where I Show My Cat

This is Finn. He is 4 years old. He was a flea-ridden, parasite-filled, sick little guy with a huge purr when we got him from the shelter. It took one flea treatment, one round of antibiotics, and 3 rounds of de-worming medicine to make him the handsome orange boy that you see here. He is the 2nd softest cat that I have ever had in my home. (1st place goes to Kashmir. Kazi was the softest sweet boy.). 

Finn is not very gifted in the traditional feline graces. He thumps onto the bed after he manages to climb that high. He has trouble jumping onto the furniture. To get onto my lap, he has to take a long twisty route that ends with him cautiously walking from the sofa to the recliner arm to where he sighs and lets himself collapse onto my lap.

What Finn excels at... what cannot be seen in a photo, but only felt, is his ability to make you feel loved by him completely. He starts purring the second he reaches my lap. He presses in to be held, to be loved. And in doing so, he is a helpful calming source of peace in my overwhelmed heart. 

He has spent a lot of time on my lap today. It is too many things to list here. Too much to do, too much pain in my ankle and my mind today. Today I told myself that I could put all the balls I am constantly juggling down on the ground... and pick them up tomorrow; or I could watch them all crash down and shatter.  I decided to put them down and try to take care, to stop the world for a bit and only do the absolute have-tos.  

Slowly I found my way to more peace. I do not know how to keep juggling. What I do know is a) my Finn loves being with me, and b) God loves me and is with me. So I am going to sleep now, and my Finn is already laying next to me. 

Praying for peace in my heart, in your travails, and in life for us all.