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.
Even So, Joy 
I am so sorry that you are having to deal with people that are anything less than supportive and graceful. Good job putting it out there. All too often people are shocked and surprised to learn of the additional social stress if what you are going through. We lost a group as we got diagnosed and looking back it’s clear it wasn’t a loss but it hurt and it was hard when we had enough hard. You are doing a great job. Keep swimming. Still praying for lots of little big miracles to fill your days.
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I’ve been following Tori’s story since the beginning. I live in IN but have family in your area and feel a connection. You are amazing parents. I have felt very proud of you both for caring for Tori the way you have. You have only God and each other to answer to. I’m truly sorry you have to deal with people adding to your stress. It is clearly an inability to understand the immense challenges of dealing with a terminally ill child. People don’t get it. Thank you for being authentic. Tori is a blessed little girl to have you both as her mommy and daddy.
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Praying for you and whoever is causing this stress…. “Hurt people hurt people”…May God bless you and comfort your hearts and give you an extraordinary amount of strength and grace.
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I have been following an praying for your baby girl Tori as well as for you an Brennan. I’m sorry to hear that some people are giving you a hard time about what you are not doing on social media. I for one think ,an know ,that you are doing the hardest job in the world to take care of an ill family member that is terminal. Especially your child. You have to do the best for your immediate family because you, your husband an Tori are the only ones that have to live your daily life.
You an Brennan give so much of your time to others as well as Tori. Do not be ashamed if you don’t happen to post a picture of Tori in an outfit someone sent. If that is the only reason they sent the outfit in the first place it was not given in a loving spirit to me. I’ll be praying for Tori as well as Brennan an yourself. Much love an peace sent your way.
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I was trying to find a place to say what a loving and kind hearted person you are and I can tell by what I see ….your husband is wonderful as well. Lesa you have enough on your plate with Tori to have to explain your every move. If people send you something or give you something it should be out of love not waiting for you to smother them with Thank you’s ext. Especially knowing there arent enough hours in the day in general , add a child ,A sick child at that and forget it. there is no spare time!! I think you are a sweetheart and I pray hard for you, Tori and Brennen everyday. Dont let ungrateful , shortsighted,attention hungry people get you down. XOXOXO Rachel
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Praying for Tori and you all – when my son was killed in an accident I was amazed when a FEW people walked away because they couldn’t” deal with our sadness” and yes it did hurt But we continued on because we had no choice and found there were others who did care and shared in our grief – for those we were/are thankful. You all are doing such a good job loving and caring for your precious baby. Remember you all have shared the gift of Tori with us, people you don’t know, and in reality you “owe” us nothing , we have a choice what to do with your gift . Take care of your Tori and take care of yourselves as well as you can and know you will never please everyone and that is ok because they are not walking your path – wishing you peace
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Continuing to pray, pray, pray, for more grace, more love, more patience, more of Christ and for forgiveness for those who are making an immensely difficult time, more difficult. Blessings to you all!
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I totally get why you felt the need to write this. Yes, the guilty need to see it but also, you are a writer. Keep processing this with your words…for us as well as yourself.
BTW..Your screenshot of Brennan’s status update was taken at 11:11. Needless to say, I know what my wish is for you and your beautiful family.
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You are doing an incredible job and God is using all three of you to do amazing things. Please try not to let a second of your energy be spent on those who do not speak the truth or understand your hearts. Do not give them any power in your life. The last thing you need right now is to worry about thank you notes and which outfit Tori has to wear next. And make sure that you are getting a chance to take care of yourself–which might mean an extra long shower while someone else holds sweet baby Tori! No matter who walks away, there are many more of us leaning in and praying for you all.
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So sorry that this negativity is happening to you. I will continue to pray for your family and beautiful Tori. God bless and stay strong!
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You and your family are beautiful. You are doing the very best possible in a horrible unimaginable situation that, for the time being, has no happy ending. Be proud of yourself and everything that you do. I respect and am amazed every single day at your strength and courage. You are amazing! Don’t ever doubt that. Angry and unhappy people want to look for the bad in everything and everyone. They want everyone to be as miserable as they are. Take it with a grain of salt… Love to you all and praying for the healing.
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I love seeing pictures of Tori and following your story. It saddens me that people who you are close to are causing stress and being selfish!! You and your husband are wonderful parents and you’re absolutely right, God has called you to be Tori’s mom and only you can give her what she needs. She is a precious gift and by your vulnerability, you are touching lives and helping other families with the same disease. Stay strong and go to the Lord with everything. I’ve been praying for you and Tori! Just a side note…..I saw a few weeks ago that you work at Milton Hershey school? My in-laws are house parents there for high school girls. Take care and keep those pictures coming…she’s so adorable!!💜
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We are relief houseparents!
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Folks need to think about what it really takes to “walk a mile in someone else’s shoes”. You are doing an incredible job in unfathomable circumstances… Keep your eyes on Him! God bless you. Praying for you.
Sent from Yahoo Mail on Android
From:”The Adventures of the Brackbill Family…” Date:Sat, Jun 20, 2015 at 12:01 PM Subject:[New post] Grace in the Midst of Pain
lesabrackbill posted: “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 thr”
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Oh my goodness. I am so sorry you are even having to deal with something like this. Unbelievable, but then again, as someone already mentioned, “Hurt people hurt people.” Know that here in Mozambique, Tori and you and Brennan are being prayed for, and being loved. For every inane trivial stupidly silly distracting drama that is being sent your way, may warrior angels rise up and rebound them back to the sender (with God’s love added so the barbs are disarmed and can never do damage again.) You are amazing friend and I am praying people’s pettiness or ignorance will cease to subtract from your precious time and energy. Sending big hugs from afar to travel the distance and meet their destination.
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i can’t believe the selfishness of others during a time like this. It’s disgusting and deplorable I’m sorry you have to go through this. There’s not much that makes me angrier than people who are supposed to support you being total jerks!!
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Know the whole story before you judge. And I feel sorry for your mother in law.
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It’s so hard these days people are very self-focused and can’t see past their own agendas. It’s such a shame but I assure you all sane & rational people can see you two love little Tori to the moon and back. Keep on doing what you are doing and if the haters keep on hating. ….delete them! Best wishes today & always.
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I have been reading your posts for quite some time. I have always been amazed on how you and Brennan have handled this. Please, as hard as it might be, don’t let other people bring you down.. You two have an amazing love for your daughter. I can’t even say I understand what you are going through, I would never say that. But know there are people out here that are praying for you and Brennan and Tori. I pray for strength and guidance for you two.. and a miracle for Tori. Shut the door and walk away from people that aren’t treating you right.. You don’t have time for that. ..
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I am so sorry people have hurt you and your family like this during such a challenging time. You are amazing people and I can tell that you are such loving parents to Tori. You have inspired thousands of people with your journey. These people think about you, pray for your family, send gifts, deliver food, and create art for Tori. We do it because we love you, Brennan and Tori and we love how you do all that you do with such Grace. Praying for you always.
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Other people’s drama is just that — other people’s. Let God deal with them. And pray for them.
It was 10 years ago since I took care of my baby’s physical needs. Aside from being premature, Samantha was healthy, and that season of my life was the busiest for me. I think I am still mentally hazy, catching up on my sleep from then. I can remember being stressed and alone and resentful and tired of my days being all-day-every-day time-consuming. The last things on my to-do list were things like thank-you notes and phone calls and visits. I am amazed at how much you accomplish in a day. I have been personally blessed by your walk in ways I never imagined.
Thank you for sharing so much of this journey with us. And it is just that: YOUR journey. God deals with you. I hope those impacting you negatively find a different, more positive way to get the attention they seem to need.
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Bravo…and may you continue to be Blessed.
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I am so sorry to read this. It just makes me glad all over again that we didn’t have Facebook and high speed Internet (ha! we had dial-up) when Nathan was living. I would have had to make choices about time, and I didn’t have any, so I would have probably thought I was missing something. And I would have probably run into what you are: drama. People who do not have a child with special needs or a rare and fatal disease have NO IDEA WHAT YOU ARE GOING THROUGH. We had our share of people with “good ideas” for us, or reasons why God allowed this to happen to us, or reasons why God DID THIS TO US. But for the most part we didn’t have a window into our world except by people who were invited. The Internet changes all that. It brings with it some INCREDIBLE blessings. But it can also provide an avenue for people who think they know things they really do not know.
Please know that there are lots and lots of us out here who have never met you, probably never will, but who love you as Christian brother and sister, and care for and pray for Tori on a daily basis, and don’t need to know a thing. Except maybe how to pray specifically for you all. We aren’t going to tell you you’re “getting it wrong” or you haven’t thought of something yet that will cure her, or whatever other goofy thing someone will think up. I remember once when I was feeling a little ornery in church…a lady told me it was easy to deal with Nathan’s fatal copper metabolism disease…just have him wear a copper bracelet and feed him copper-containing foods. I looked her in the eye and said “he doesn’t eat.” Now, that was mean. But I’d had it with good ideas. Wouldn’t they think, if my child was dying, that I would have known of all the things that could be done to save his life? (there were none). I then felt sorry for her deer in the headlights look and explained tube feeding and blood brain barriers and so forth…more than she’d ever wanted to hear. But sometimes we’ve just had it, right?
I’ll pray for the ability to be more discreet for those who have hurt you–and even for the grace to apologize. And I’ll pray for you to be deaf to much of this when it comes along. And especially I will pray for your energy and to not lose hope and heart. It’s very hard sometimes, but at those times you just turn to your sweet husband and to Jesus and try to regroup. I know most people aren’t trying to be mean or to hurt, but it sure feels like it sometimes, doesn’t it?
Jennifer
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I can attest to your love and graciousness. We have never met, and yes, we have quite very different views on various areas of life. However, you have always accepted me, never judging, even when disagreeing. I am sorry people are so insensitive, pursuing their own agendas and lashing out in judgment. That makes me sad–for you and Brennan (who don’t deserve it!) and for them, that they are so miserable, they need to bring others down. Keeping you, Brennan, and precious Tori close in thoughts. Peace to you all!
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I can attest to your love and graciousness. We have never met, and yes, we have quite very different views on various areas of life. However, you have always accepted me, never judging, even when disagreeing. I am sorry people are so insensitive, pursuing their own agendas and lashing out in judgment. That makes me sad–for you and Brennan (who don’t deserve it!) and for them, that they are so miserable, they need to bring others down. Keeping you, Brennan, and precious Tori close in thoughts. Peace to you all!
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Yes, this article is about me. You can quit sending me nasty messages. I publically admit my wrongdoing. I have been properly chastised, humiliated, brought low, and learned my lesson. I apologize to Tori and her parents. I apologize to her huge fan base that seem to take my actions as personally as if they were done to them. I don’t know what more I can do to show my repentance other than to leave. If more is required, please let me know while I am still able to do it.
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Tammy – it wasn’t just about you. You are forgiven ❤️
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She doesn’t’t need or want your forgiveness. She only ever wanted your love, your understanding, your compassion, and support. Instead she received condemnation, lectures, chastisement, and constant rebukes because you are always right and have done nothing wrong. Even your note on team tori does not accept any responsibility. Grace is a lie. And i’m sure since you have to approve these posts you only allow the ones that make you look good to be posted.
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Lee – I don’t know who you are, but I want to quote your other comment and say that since you don’t know the full story we ask you not to judge. I am absolutely not perfect and admit when I have been wrong. The details of this mess are between the four of us but I can promise and prove that Brennan and I have been incredibly compassionate and have been treated terribly. We kept quiet for four months but needed to address it.
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You are such a wonderful, graceful, faithful, loving couple and above all parents. I strive to be half of the Christians you both are. You have brought me closer with God and I have prayed and will continue to pray my heart out for you and Tori. Im sorry you went thru this but glad you posted it because everyone needs to release their stress and tension and im sure you felt a great sense of relief after getting it off your chest. But please try to focus on the millions who love and adore you, not the select few who are judging you. We are here for you all and love you and knoe how hard you work. GO TEAM TORI!
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I am Tammy and I know the whole story. I just wanted confirmation that you intentionally wanted others to know what was going on between us. Thank you finally for that. This is the last you will hear from me for I am out of your lives forever but you will always be in my prayers. I too watched a child die from a terminal illness and I am deeply sorry that you have to go through this. I am thankful Victoria had you and Brennan for parents.
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Tammy – I hope you know that not having you in our lives is the last thing that we would ever want to have happen. Know that we are willing and ready to reconcile and rebuild our relationship if you decide that you want that as well ❤️
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