Acceptance


Such an exciting word. Acceptance.

It can mean that you’ve been admitted into the school you’ve always dreamed of attending.

It can mean you fit in well with a new group of friends in a new town.

It can mean an agreement was reached and the other party is willing to take your offer to purchase their house.

All of these uses of the word acceptance are positive.

They point to beginnings and growth.

To new experiences, happiness, and fulfilled dreams.

Acceptance is also one of the 5 stages of grief.

And for me it seems like the last one.

I’ve done anger.

I’ve done bargaining.

I may have briefly been in denial.

I’ve definitely done depression (for far too long).

I’m working on acceptance.

On accepting my role as a stay at home Mom and not being bitter.

On accepting the change this has caused in the life of my family and not resenting my son.

On accepting we are far from picture perfect (literally. in fact it’s impossible to get a picture with everyone’s eyes open) and not being embarrassed.

On accepting that I’m a special needs mom and not being ashamed.

On accepting my life revolves around therapy appointments where my son is the patient and not where I’m the therapist.

On accepting that I spend my days working hard trying to do everything I possibly can to give my son the chance to live his best life.

Isn’t that every parents dream?

While my path may be bumpier than others, we all want what’s best for our children and we are willing to do what it takes for them.

It’s time for me to accept that my journey doesn’t look anything like what I expected it to. But that doesn’t mean it’s not worth traveling.

Learning to be a Follower


I’ve always felt the need to be in charge.
To be the one making the decisions and giving direction.

To be the one who gets the credit.

To be the one who is noticed for all of my efforts.

I needed that affirmation as my identity hinged on it.

On being a leader.

On being perfect.

On being the one who can get “it all” done.

It’s been made abundantly clear to me that needed to change.

And it’s actually quite a relief.

There’s less pressure.

I’m going to make mistakes.

There’s no doubt about it.

But it doesn’t mean I’m not valuable.

I’m learning that it’s okay to be a follower.

As long as I wisely chose who to follow.

The lesson from VBS this summer was Jesus gives us hope and the kids repeated “follow Him.”

It’s simple enough for kids to understand and simple enough to be eye opening to a lifelong Christian.

I’m not the one who knows what’s best for me and I don’t need to be.

And I’m learning to be ok with that.

Meditation music

What You Want – Tenth Avenue North

 

Epiphany

People often have “light bulb” or “aha” moments in the shower.

I have them in the middle of the night when my daughter wakes up and I get to cuddle with her until she falls asleep.

I do my best writing in the early am hours when I first wake up or late at night right before bed.  

It’s because during those times I stop.

I listen. I am more focused and less distracted by cell phones, TV, other people, or anything.

It’s just me and God.  

And it’s awesome.

When I take the time to listen to Him, I give myself an opportunity.  

An opportunity to praise Him.

An opportunity to thank Him.

An opportunity to grow closer to Him.

An opportunity to hear Him and live the best version of my life.

The version where He guides me and I follow Him.

I like that version a lot.

And I hope to continue to carve out time so I can get to know God better.

What better relationship is there?  

It’s well worth it.

I’m well worth it.

And that’s my latest epiphany!

Meditation Music:

It’s not easy


Imagine the person you would be if you never suffered.What if you never failed a test?

What if you never got last place?

What if you never experienced heart ache?

What if no one ever did or said something that hurt you?

What if you got everything you ever wanted?

Would it be enough?

Or would it simply leave you wanting more?

Much like the cliche’ saying you don’t get rainbows without rain, you don’t experience the ups if you don’t struggle through the downs.

Without pain, we wouldn’t know true joy.

Without loss, we wouldn’t appreciate what we do have.

Without fear, we would never learn true strength.

Without difficulties, we would never become the person God intended us to be.

He never promised it would be easy. But He has a plan and regardless of the decisions we make, it will end up the way it’s supposed to. He’s refining us all the time and preparing us for what is to come, both on earth and in our eternal home in heaven.

Meditation Music

Hawk Nelson – Diamonds

Surviving vs Living


My survival mode button was activated when Buddy was born and started having seizures.  
All I could focus on was what he needed and what I could do to help.

I researched endlessly online, emailed anyone I could think of who might be able to help, and asked countless questions of the doctors.

It was an emotional roller coaster for months and I did whatever I needed to do to ensure he got the best care and to ensure that my daughter felt loved.

I made sacrifices and things that mattered before seemed so trivial. 

I haven’t cut my hair, worn makeup, or gotten new clothes. I haven’t spent money on me as it seems so frivolous. I had to stop working to care for him so finances are limited. What we do have needs to be spent on his progressive treatments or on something fun for Munchakin since she is so patient and deals with so much.

I’m not sharing this to seem like a martyr, it’s more of an explanation of how I got to this point.

I stopped going places. At first, I didn’t go anywhere but the hospital because he was in the NICU. Then I didn’t go anywhere but the hospital for appointments because I had a new baby on a feeding tube. Then I didn’t go anywhere because having a toddler and a special son made it hard to travel. Then all the therapists came to the house and it was easier to have my husband pick up milk on the way home. Then I stopped working and stopped going to church because it got him off schedule which affected his seizures. And before I knew it, I didn’t go anywhere.  

It didn’t happen over night but I knew it was happening. I just didn’t know how to stop it. I’m not even totally sure how to fix it now.

I want to be social but it made my heart race and I had to stop and catch my breath after getting light headed when I had to leave the house to go to the dentist. The dentist!

I can go places for Munchakin where there are large crowds and we are part of the masses. I’m not yet able to places where it’s a small group setting and I don’t have the protection or excuse of needing to chase a toddler around.  

A place where I’d be at risk of being vulnerable.

A place where I would have to be real.

A place where I wouldn’t want to answer the typical small talk questions and I definitely didn’t want to answer the questions about Buddy.

A place where I would have to deal with actually living instead of just surviving.

I’m aware of the problem which they always say is the first step towards solving it. But boy that next step is a big one! I’m ready to turn my survival mode button off and to start living again. I’m just not sure how to do it yet…but I know it doesn’t look like it used to.

Meditation music
Casting Crowns – One Step Away

Decisions

I’ve never been very good at making big decisions.

I got better as I got older and as I practiced. In the work environment as a manager, I was even once described as decisive.

However, since Buddy’s traumatic beginning, I’ve had difficulty making even the smallest decisions.

What do I want for dinner?

What color shirt should I wear?

Should I go to the picnic or should I stay home?

It sounds ridiculous but the truth is I’m afraid.

Afraid of what you ask?

Absolutely everything!

In a warped version of my mind, one decision could have changed everything with Buddy.

If we had waited longer to conceive.

If I hadn’t gone to the Con Ed course when I was 5 days pregnant.

If we had more testing done pre natally.

If we had chosen to transfer him to a different hospital.

In the world of choose your own adventure, I’m afraid. It feels like I had so many chances to change the story and I always picked the wrong one.

In my head, I know none of that is true. But that doesn’t make it any less real.

It feels like I’m at a fork in the road.  

Recently, it seems as if God is showing me what my life could be like if I continue on the path I’m on.

God has placed people in my life who have made the choices that seem so easy today. Choices to avoid people, choices to leave conflict unresolved, choices to allow emotions to control actions, choices to leave thoughts unguarded.

The thing is, these choices have led those people to places I don’t want to go.

I’m at the fork in the road where I need to choose wisely. I can make the easy choice and stay on this path or I can step out and do the uncomfortable so I can change my direction.

I pray God gives me strength.

I pray that my faith is stronger than my fear.

I pray that I can take action instead of letting fear win.

I pray I can take the path God would choose for me.

Meditation Music:

Anniversary


Typically an anniversary is a celebration. Another year has passed and the date allows you to remember the original celebration with fond memories.

At other times, anniversaries can be sad. A date can be a reminder another year has passed without a loved one or a reminder of when a tragic event occurred.

What if a date is both? A celebration of a new life God created and a reminder of a medical tragedy with life altering ramifications?

It can be complicated and the past month has left me conflicted.

Buddy has survived more than any human being ever should. He is an amazing miracle and should be celebrated.  

But at the same time, I’m broken from his traumatic beginning, the choices we had to make, and the letting go of the dreams I had for his life.

It’s hard to reconcile when what’s supposed to be one of the happiest days of your life is also one of the very saddest.

If I could go back in time and give myself (or anyone else for that matter) a message it would be this:

Today might have been hard, really hard. And tomorrow might be harder. But you have to look for the bright spots, the simple things. Someone once said, it’s not the days you remember, it’s the moments.  

The last year was a long one for us. Yes there are lows I won’t forget but there are moments of pure joy such as watching Munchakin chase bubbles as the sun sets, seeing a hummingbird find our feeder, watching Buddy hold his head up on his own, having meaningful conversations with people I never would have known a year ago. These moments are what I will remember.

We don’t know what the future holds and the past can’t be changed. It’s an ongoing battle (and a really tough one) but I’m trying to just live in the moment. There’s really no other choice!

Meditation Music

Be Content


All I am promised is this moment.

There’s no promise it will be pain-free.

And there’s no promise it will look like anyone else’s.

There’s no comparison.

Between my life and yours.

Between Buddy and Munchakin.

Between my challenges and the challenges of my friends.

Between who I am and who I thought I was going to be.

Between what I wanted and what I have.

Between what I think your life is like and what it’s really like.

There’s no comparison and there shouldn’t be.

Comparing only leads to jealousy, envy, fear and desire. None is healthy and all are against God’s wish for us and His commandments.  

“Don’t compare yourself with others. Each of you must take responsibility for doing the creative best you can with your own life” (Galatians 6:4–5 msg)

So in those moments when I want my son to be reaching the next milestone and he’s not yet…

When I want him to look like or be like other babies/children…

I’ll remind myself that he is exactly who God created him to be and we are exactly where we are supposed to be in this moment, where we are supposed to be on our journey, where we are supposed to be today.

Meditation Music

Unable to Be Offended

Until today.

After all the hard choices we had to make during our sons beginning, I told people I was unable to be offended.

Most people were afraid to say the wrong things to me during an extremely emotional time.  

Literally nothing they could say was worse than what I was experiencing. Words couldn’t be worse than not being able to ease your child’s suffering or the fear and doubt about the decisions you were making.

A family counselor even worried about how I might take what he said.

I told him since my son’s birth no one has yet been able to offend me.

No one, until today.

I know it wasn’t intentional. I know it’s something I’ve even done in the past.

But then someone made a joke about special needs children and the choices of their parents. It wasn’t directed at me, specifically, but I identified with it.

It felt hurtful.

It wasn’t intentional and I understand that. But it’s something I’m going to have to come to terms with.  

I need to learn how to respond with compassion and tell someone when their joke is not appropriate.

And I need to remind myself we all have areas of sensitivity.

There’s a quote by J.M. Barry which speaks to this:

“Be kinder than necessary for everyone you meet is fighting some kind of battle.”

None of us will go through this life without challenges. The challenges can change from year to year or month to month.

As brothers and sisters in Christ, we need to be able to be open with each other when we feel hurt and not let it fester.

It’s easy to shut down and never explain why you no longer spend time with a person or spend time in a group.

It’s harder to share the reason, discuss it candidly, and move forward.

But if you can, you’ll have an even more meaningful relationship and will have practiced forgiveness.

It’s a gift we’ve all received but all too often avoid giving out.

Meditation Music:

Oceans


Oceans has been my theme since Buddy was born and probably even before.My friend wrote an analogy saying God was changing me and asking me to breathe water.

There you were, sailing across the ocean, enjoying the ride & soaking in the sun. All of a sudden God pushes you into the ocean without a life preserver. As you’re struggling to stay afloat, you’re looking at Him saying “why did you do that? I’m going to drown!”

Then He says, “Trust me. You can breathe water. There is beauty down there that you’ve never imagined. All you have to do is take a breath of water.”

Of course, you’re terrified to take it in. You know he’s all powerful, you know he has plans for good, but it’s nothing like you’ve ever known. You just can’t take that first breath. So you try to stay above water and ask God to rescue you, but you keep treading water, trying to stay afloat. Your body aches, you feel abandoned, you feel like He’s just watching & wonder why he doesn’t jump in to save you.

Then other people come to the edge of the boat & say “just trust him” and “it will all work out”. And while they mean well, none of them has a rope long enough to reach you and none of them really understand what’s being asked of you. So you’re left in the ocean, floundering with God telling you “All you have to do is breathe in water”

All you have to do… Is change everything you’ve ever known…

I understood it but hated the concept at the same time because it seemed impossible.

How could I ever learn to breathe water?

I couldn’t.

But God could teach me.

If I listened and trusted.

Over the past 7 months, I’ve glimpsed what she meant and told her I was starting to breathe water.  

And then I’d struggle again and try to do it on my own.

Fail.

I’d breathe water and then forget and try to do it on my own.

Fail again.

Finally, I’m to the point where I’m breathing water and never want to breathe air again.

I’m trusting Him fully and pray I never return to the person I used to be.

She was pretty cool but had a lot of baggage. I can’t say the baggage is all gone at this point. But the new version of me is even more special AND I have help. He’s carrying me and my baggage.

And He will be there no matter what tomorrow brings….

Today I’m praying that God will help you see what he has in store for you. We are told that “‘In the same way I will not cause pain without allowing something new to be born,’ says the Lord.” (Isaiah 66:9a)

I continue to believe that out of this situation will bloom some great beauty. That when God finally shows you the way to start breathing the water, you will be able to swim to new places of beauty that most of us will never see.

Until then, I will continue to pray that God will help you have the strength to swim while you’re figuring out what it means to breathe water. That He will provide you some time to float in between periods of treading water so that you can have clarity. That he strengthens your perseverance, faith and ability to hear His word without causing too much more pain.

I pray that those of use standing on the boat are able to send strength & peace in a meaningful way.

Mostly I pray that God will show you glimpses of the beauty He has in store for you, so that you can see the promises beyond the struggle.

Meditation Music:

Oceans – Hillsong United

You choose your adventure, He chooses the end