Expectations and Grace

I had one of those “I feel like I’m failing” moments yesterday when both babies were fussy (most of the day) and I couldn’t figure out what they needed.

All parents have these moments where we feel like we have no idea what we’re doing. It’s a normal part of this journey.

While I try to not fall into the comparison trap, it happens, especially in those areas in which I am the least confident. It’s SO easy to see another mom with her children (whether online or in person) and compare your performance to hers, making yourself feel disappointed and like a failure. When it comes to social media, it’s likely more “performance” than reality, anyway!

When I finally got them to nap, I had a chance to think. How many of these self-imposed expectations are actually relevant to the care of my babies and how many of them are merely an effort to measure up to my perception of what the perfect mother looks like?

And I realized something important: my babies don’t think that I’m a failure, that I don’t know what I am doing most days.

To them, my presence is enough. I walk into a room and (most of the time) they smile wide. They are thrilled just to be in my arms. So why do I compare myself to unfair, self-imposed ideals and expectations?

They don’t compare like we do because they have NO idea what other moms do. I am the only mother they know! If I were actually failing, they would have absolutely no idea. Therefore, there is no way for them to be disappointed (until much later 😉) in me.

Isn’t that freeing?

My babies delight in me. They love me. And their opinion (meaning what brings them joy, security, and comfort) should be the only one that matters (God and my husband aside) when it comes to parenting them as infants.

THANKFULLY they don’t have social media to show them what other moms are doing with their infants, and I need to remember that. And maybe I need to reduce my social media consumption on days when I’m feeling like that.

This realization is the first of many reminders throughout my life to show grace to myself during these (sometimes difficult) days of infancy with twins. And toddlerhood. And childhood.

After all, their joy is what matters right now, not my comparison to what I think others are doing. ❤️

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

Grace in the Midst of Pain

Many have told us that they are amazed by the grace with which we are walking through this tragic and painful time.

We are amazed, too.

I’ve heard it said that trials bring out your true character. I must admit that I am surprised at who I have been throughout this journey.

Before this happened, I wasn’t always happy with who I had become. We had many unexpected changes in the past year; some had hardened my heart and left me bitter and unable to show grace easily. Add sleep deprivation into the mix and you have the perfect storm. These were mostly internal struggles – on the outside I was able to keep everything normal and in control.

Lately, bitterness has been trying to creep back into my heart because of the actions of a few people who are choosing to take out their inability to deal with Tori’s diagnosis on us. The “who” isn’t important – it’s the “what” that matters, and I choose to share this in hopes that it will impact someone and they will choose to treat families like us differently.

As if Krabbe weren’t enough to deal with, we are being forced to deal with irrational, selfish drama that makes no sense to us at all. People are making assumptions about us and they are wrong. Period. 

No matter how hard we try, we can’t seem to please a few certain people and it has caused so much additional stress and pain in our lives.

Tori is our first and only priority.

And yet, we still have so much grace in our hearts even in the midst of this pain and added drama.

Brennan said it so well this morning: 

  

Brennan and I are SO far from perfect. We are human, we make mistakes. But I can tell you this: we are loving, kind, joyful, non-judgmental people. 

We are so thankful for every single note or gift of encouragement that comes our way. We try to acknowledge all of these things publicly but sometimes we forget in the midst of taking care of Tori.

I wish you all could be a fly on the wall in our home, seeing what a day in our lives looks like, especially for me during the day when I am on my own caring for Tori.

This is my basic schedule:

  • 6:30am – feed Tori (40 mins)
  • 8:00am – give first med
  • 9:00am – give second med
  • 9:30am – try to shower quickly
  • 10:30am – feed Tori (40 mins)
  • 11:30am – 2:30pm – Early Intervention (not daily)
  • 2:30pm – feed Tori and give med
  • 3:30pm – give second med
  • 4:30pm – maybe start dinner 
  • 5:30pm – Brennan gets home 
  • 6:30pm – feed Tori 
  • 7:30pm – bath time (every other day)
  • 8:30pm – family time (maybe)
  • 9:30pm – give first med
  • 10:30pm – give second med and feed Tori 
  • 11:30pm – hopefully sleeping 

In between all of those things mentioned, I am also:

  • Giving eye drops
  • Putting face cream on
  • Putting splints on periodically
  • Suctioning her mouth 
  • Cleaning up spit up
  • Changing diapers
  • Changing her position 
  • Turning her giraffe back on all the time 
  • Doing vision and physical therapy
  • Holding her for hours if she needs or wants to be held
  • Updating Team Tori while she sleeps in my arms
  • Putting Essential Oils on her feet and diffusing them
  • Maybe getting one chore done
  • Maybe eating meals 
  • Preparing her milk for the next day
  • Venting her g-tube when she heaves
  • And the list goes on…

I do NOT say all of this for accolades or attention. I simply want to show that taking care of a baby like Tori is incredibly time consuming.

I rarely get to do anything for myself, and I don’t mind at all (as long as I can shower! Tori appreciates that, haha). This is my calling in life and I fully give myself to Tori and her care. I wouldn’t have it any other way.

Now that she has started to have swallowing issues, we cannot leave her unattended at all.

She hates the car, so I rarely leave the house. We are working on solutions (including trying a new car seat), but for the time being we take her to the doctor and to church. That’s it. She likes planes and trains, not the car.

While I try to post pictures of everything that has been sent to Tori, and while I try to put her in every outfit, it is a challenge. I fail. It is nothing personal, I promise. 

Tori has a huge pile of outfits that she has yet to wear! She has quite the wardrobe! 😄 I love posting pictures of her in all of the outfits that others have so generously given as a way to honor their gift, so I try my best to dress her in every outfit.

But, some days Tori doesn’t let me take pictures. Sometimes she needs to stay in pajamas and be comfortable. 

Tori is my priority, along with Brennan. 

I can’t believe that I even have to post this, but it is important to me that it be made known.

I do not judge others, for any reason. I do not hold grudges, and I don’t like that people are spreading rumors about us that are absolutely untrue. 

My husband is amazing and he is one of the best men I have ever known. The way he cares for Tori along with providing for our family is remarkable. He has such a pure heart and is so loving and good. ❤️

Please don’t assume things about us. Don’t tell us we are wrong about things when only we really know our hearts.

If you have a perceived problem with us, please come to us directly. Do not post passive-aggressive and vague statuses about us. Do not publicly slander us. Please. We don’t deserve this.

We have enough to deal with and may need to start establishing boundaries for our health and well-being, and that makes us sad. We have chosen to surround ourselves with positive, loving, helpful people, and we will continue to do so.

I’m sorry that not everyone is dealing with her diagnosis well. But I do believe that it is a choice to continue to show grace, to love her, to be part of her life as long as we have her. And it is definitely a choice to be sensitive to the needs and feelings of parents of terminally ill children. 

Grace and love abound in our home. Anyone who enters through our front door can see that. We do not intentionally leave people out or refuse to acknowledge things. 

Please show us (and other families like us) grace and love. It is the least you can do. 

Taking care of our precious baby girl is the most important part of our lives right now and nothing can or will change that.

Patience and Grace

I have been learning a lot about grace in the past few years – mostly pertaining to how infrequently I offer it in my daily life. The book “Grace” by Max Lucado was eye-opening and I was so challenged by it when I read it a few years ago. 

A practical example? Most of my early driving years were in Southern California. Enough said. 😉 I am much better now in that area.

I have found that patience and grace go hand in hand: for example, being willing to be patient with people is often a form of grace (think Bill Engvall’s “Here’s Your Sign” stories). 

I always try to remember that I usually don’t know the back story behind someone’s behavior or attitude and that helps me to be graceful toward them…usually. Do they deserve my patience and kindness? Yes.

When I became a parent, I was amazed at how naturally patient with Tori I became (I now believe that God gives mothers an extra dose of patience and grace for their babies, especially given the sleep-deprivation that accompanies motherhood). Granted, she was also the perfect baby for the first four months and was rarely fussy or irritable. She didn’t sleep much, but she was at least happy about it.

Throughout the past two months with Tori’s increased/constant irritability, decreased sleeping hours, and the added stress of a terminal diagnosis, I have had to make a conscious decision many times a day to show a new level of patience and grace toward her and the situation. She can’t help how she feels and she doesn’t have any other way of telling me that she is uncomfortable.



I fully admit that the first two weeks of this behavior change were frustrating and I was not very patient. I assumed that the fussiness was simply a growth spurt or something like that, and, given that I haven’t had a full night of sleep in about ten months, its constant presence wore me down quickly. 

However, it is amazing how the word “terminal” can totally transform your attitude in an instant. 

Now, I recognize that a day may come when I would do anything to hear that cry again. To be up all night with her, as sleep-deprived as I would be. To comfort her and hold her. Just one more time.

Edit

I pray that this lesson doesn’t fade away as quickly as it came, because it applies to everyone I meet and not just Tori. We have no idea how many days are left in our lives or the lives of others. We cannot imagine what impact our kindness and patience may have on someone’s hurting heart. 

And so, grace continues to be the primary lesson the Lord is having me learn thus far during this wonderful journey of motherhood. It is often accompanied by the lessons of selflessness, humility, and patience. And I am so thankful for the changed person I am becoming, even though the lessons aren’t easy.

Book Review: “Grace” by Max Lucado

I never cease to be amazed at God’s perfect timing. In the past couple of weeks, I have realized (with God’s gentle nudging) that I have not been generous in offering grace to others in a few specific situations in my life. I have been quick to be critical, I have been self-righteous at times, and I have been slow to forgive. And then this book arrives in my mailbox…coincidence? 

“Grace” helps us explore the deeper meaning of the word as well as its application in so many areas of life: forgiveness (which is what I needed to read the most), humility, love, and many others. 

This is yet another book in which I have underlined quote after quote.

Grace is not blind. It sees the hurt full well. But grace chooses to see God’s forgiveness even more…Where grace is lacking, bitterness abounds. Where grace abounds, forgiveness grows (pg. 61).

 

There is something in you that God loves. Not just appreciates or approves, but loves. You cause His eyes to widen, his heart to beat faster. He loves you. And He accepts you (pg. 118).

 

Rather than conjure up reasons to feel good about yourself, trust God’s verdict. If God loves you, you must be worth loving (pg. 121).

Max uses Scripture and personal testimonies from people (including himself) to provide a compelling and powerful book on an incredible gift. It is so easy to believe the enemy’s lies that we are worthless, unloved, failures, and incapable of offering grace. But God’s Word says otherwise and Max Lucado leads the reader through Scripture to show exactly how God sees us.

Max Lucado has yet again written a masterpiece…he is able to take difficult topics and break them down into tangible, meaningful explanations. Grace is something that people can wrestle with for years before fully grasping its power; this book can help. With his honesty, wisdom, and wit he is able to assist the reader with fully embracing the grace that God so freely and abundantly offers to us. 

God definitely used this book to soften my heart, and I know that it is one I will refer to over and over again. I can’t wait to do the Bible study at the end (12 weeks) to help me dig even deeper into the knowledge of God’s amazing grace. 

 

I received a free copy of this book from Booksneeze.com and the opinions expressed are my own.