Day 1305

We made our monthly trip to the oncology clinic today. I’m thrilled to report Justin’s cell counts are good which means his blood and bone marrow are still clean and free of leukemia. We are so very grateful!

We have successfully moved to a rancher, which is something we’ve been wanting to do for some time. I don’t talk about it much anymore, but I was diagnosed with congenital muscular dystrophy in 2014. I have a rare form of this disease, which varies in how it affects different people and can onset at birth or adulthood. But, generally, it’s a progressive condition and currently there is no treatment or cure. For me, it showed up with a vengeance at age 36 and changed an active, energetic, fit mom (okay somewhat) into an achy, much physically weaker, easily fatigued mom, who is prone to pain distraction techniques involving lots of sugar.

Anyway. The actual move was hard on me, really hard. But the long-term lack of several daily climbs up and down stairs will hopefully improve my general state of well-being. Also we happen to really like this house.

God is gracious and God is good.

Here’s a few snaps of the new crib as we unpack and attempt to prepare for the holidays. I would show you our bedroom but that might just be weird.

Thank you for continued support and prayer as we press on in faith and hope. As I write from our couch, this current location is emitting an undesirable odor, but I can’t decide if it’s rotten food under the cushion, dirty socks shoved into the cracks, teenage boy smell, adolescent boy smell or worse — dog! Ew. Grace be with you, my friends.

For you have been my hope, Sovereign Lord, my confidence since my youth. As for me, I will always have hope; I will praise you more and more. Psalm 71:5,14

Thoughts on Justin, Selling our House and a Supermarket Encounter

Justin continues to battle foot pain and fatigue, but his little white blood cells are still normal and he’s doing remarkably well in school.

For this, we are incredibly grateful.

We have put our house up for sale for various reasons. Keeping it clean and picked up for showings with three boys and an idiotic, seventy-five pound golden retriever is not for the faint of heart, let me tell you. 

Just when I start to think people are generally full of judgement, unforgiving and unable to see outside of their own head, God shows me something a little bit beautiful. I say a little bit even though it was actually a very beautiful thing, because of the background setting. It happened in a supermarket and I hate these places, however necessary they are to my life. It’s always over-crowded, too bright, very cold and smells really weird in this one spot right by the lettuce. 

Anyway.

This super cute, little, old guy wearing a hat that read “I am a World War II Veteran” rolled up into line behind me. I sent him what was, in my opinion, an adorable smile but the guy behind him did one better. Shook his hand and thanked him.

The guy behind him took one minute out of his life to SEE someone besides himself and his own problems. And he responded. AND he happen to be wearing GREAT shoes. The things you notice. 

I hope you will SEE someone today. They just may need you. Grace be with you, my friends.

Real Mom Confession

Kids have NEEDS. Homework, school projects, school events, activities, sports, concerts, plays, clothes and shoes that actually fit, hair cuts, soap, toothpaste, doctor’s appointments, medication, practice this, practice that and on and on and on.

Kids talk a LOT. Mom, what is fiber? Mom, this kid at school looked at me. Mom, when is Christmas? Mom, I need help. Mom, that’s not fair. Mom, are you coming to my game? Mom, I need new cleats. Mom, why does your hair look weird? Mom, can I watch TV? Mom, why did he get to sit in the front 3 times this week? Mom, what was the Cold War? Mom, I need a poster board. Mom, where does your poop go when you flush the toilet? Mom, look at this picture I drew and LET ME TELL YOU EVERY SINGLE DETAIL ABOUT IT.

My point is life with kids never, ever stops and that doesn’t even touch your job if you have one, taking care of the house, taking care of YOURSELF. 

Me? I run around all day like a headless chicken, putting our fires, solving problems, answering questions. Then I go take a shower and realize I forgot to buy shampoo. Because you are always irreparably OUT of something!

I begin to feel like it’s very possible I am one empty toilet paper roll away from a nervous breakdown.

And, then, God in His grace, gently reminds me of His goodness and design and that every little detail is there for a reason. The stress begins to melt and is replaced with a grateful heart. Because really and truly, I am thankful I get to be a mom to my three amazing boys and all the million little challenges that come along with them. Grace be with you, moms and friends. 

 

 

Day 1240

Today, as I sat in traffic on my way to work, Wawa beverage in hand, after dropping my kids off at school, I thought, “oh, this is how normal people live.”

Justin’s physical exam and CBC showed that he is still in remission and doing well! He is also super happy that he can get a finger stick now as opposed to a full needle stab.

I recently happened to catch my boys in a rare moment of getting along while at our orthodontist. I’m not sure why the waiting room is decorated like Aunt Mabel’s parlor, but, whatever, Nicky and Michael’s teeth look better than the mess they had going on before.

As always, we are ever grateful for God’s unparalleled love, provision and healing. Grace be with you, my friends.

 

Cancer Mom Confession

You would think now that I’m no longer juggling Justin’s full-time care and education with work, house, pets, two other children, etc., etc., I would have my act together.

Nope.

I still roll into the school parking lot at the last minute with wet hair, chugging diet coke and yelling sentiments and/or last minute instructions out the car window. “Have a great day! I love you! Did you remember deodorant? Read test questions BEFORE you answer them. Make good choices.”

And you know what? I’m good with that. One of many things I’ve learned throughout my son’s journey with cancer is that I don’t have to try so hard to be a perfect mom, the best mom or even a mostly-together mom.

Because being the best is just so much dang work, pressure, strife. I could go on and on with unappealing descriptions. And let’s be honest. You can spend all that time trying to be perfect and impressive, and, at the end of the day, no one REALLY cares. Everyone is too busy with their own lives and problems.

So I will just be honestly-flawed-me and I am good with that as long as my kids know they are loved. And they do. Pretty sure anyway. 

Grace be with you, parents and friends.

Day 1229

Just wanted to share that Justin continues to survive and thrive. His teacher reports that he is not only doing well in fourth grade but excelling! He is also having a blast playing flag football. Pictured below is a note Justin wrote to Jeff and I for Back to School night as well as a football action shot.

Justin will visit the clinic this week for a physical exam and CBC. Thank you for continued support and prayer. And a very special thank you to Justin’s teacher, Mrs. Kim Bradway, for her tenderness and understanding as he transitions back to traditional school after three and a half years of chemotherapy, chronic illness and muddling  through homeschool.

We are thrilled and so very grateful for his progress.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Day 1221 – You Make Beautiful Things

4DD8CCA3-05AA-4762-AB79-D84AE4062F3BAfter three and a half years of stifling gasps, gulping down sobs and gagging on snot, I can breathe normally again.

Justin has completed a week and a half of fourth grade, in a classroom, in a building, in a school.

This did not happen without struggle. There were many conversations, tears, battles, fear. His fear about being away from me for seven hours a day.

This was a trial all summer. The impending doom. To Justin, it was. To me, it was freedom.

So it was a combination of desperate prayer, realistic discussions, tough love, and unadulterated bribery that got him in the school doors and out of the nurse’s office trying to call me to pick him up. Okay, that happened twice but I remained firm.

And he isn’t just showing up for school, bawling in the corner all day. He is thriving!

Justin’s teacher reports great listening skills, a desire to please, excellent reading capabilities, even sharing his book with another student and saying encouraging words to another boy who was having a case of first week jitters.

Now that ain’t me. Come on people. I can’t take a sick-crippled-wild-animal-child who screamed at doctors, spit out medication, lost ability to walk, pulled tubes from his throat, kicked me in the face, refused to speak, ripped apart his brother’s bedroom, tore up school papers and couldn’t be away from me for more than five minutes without having a full-blown panic attack. Then turn him into a walking, talking, reading, writing, smiling, caring, compassionate, funny, healthy little boy who just wants to go to school, play flag football and eat cheeseburgers.

I was there for all of it, yes. But God did that. God did all of that.

We won’t be without bumps in the road of course. But I am convinced that Justin has come back to us for good. And he is a beautiful beautiful beautiful beautiful boy.

 

 

Justin’s 1st day of school – again

I have been Justin’s mom, nurse, teacher, therapist for almost four years.

Driving him to school today felt much like the many times I walked him into surgery. There was no room for fear or nerves in my conscious because my heart was busy absorbing all of his. It is empathy at it’s highest level.

I am nine years old walking into school for the first time and all I know is the person who fixes everything isn’t with me. I know God is with me because my mom said so but I can’t see Him.

I feel his fear.

Just as in surgery, I know he is in very good hands. But those hands are not mine.

These are the days my faith is put to the test.

O Lord, you have searched me and known me!
You know when I sit down and when I rise up; you discern my thoughts from afar.
You search out my path and my lying down
    and are acquainted with all my ways.
Even before a word is on my tongue,
    behold, O Lord, you know it altogether.
You hem me in, behind and before,
    and lay your hand upon me. Psalm 139:1-5

 

Justin’s 9th Birthday Photo Gallery!

We celebrated with family and friends over this past weekend and crashed my brother’s beach house for some more fun on Justin’s birthday. We are so very grateful that he is here with us. He is doing well. And he is happy.

Come and see what God has done: he is awesome in his deeds toward the children of man. He turned the sea into dry land; they passed through the river on foot. There did we rejoice in him, who rules by his might forever…Psalm 66:5-7a