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.