Someone recently asked me a question that I thought was worthy of an entire blog post because it is something that needs to be addressed in our culture.
I was asked how it makes me feel – given our circumstances with Tori – when friends post about their healthy, typically-developing children.
I paused before answering, but it wasn’t a new concept to me. It is something I have thought about almost daily since Krabbe began to appear in Tori. I just wanted to make sure I was clear in my response.
I pray that you will read this with an open heart and mind and not immediately be offended.
I am human, and there are days when I feel more sensitive about it than others.
There are days when it can be challenging to see posts from friends who don’t have to face the things we do, friends who don’t have to consider their genetics when making decisions about expanding their families, friends whose children aren’t dying.
I think if I didn’t feel a little sensitive to this it would indicate a deeper issue within myself – after all, what special needs parent wouldn’t see a healthy, typically developing child and not want that for their own child?
If I am honest, it is even difficult some days when I see photos and posts of other Krabbe children who can still do things that Tori can no longer do.
All of these things are reminders that I am losing my child and there is nothing I can do about it.
However, if these people are truly my friends, why wouldn’t I celebrate with them?
Why wouldn’t I be genuinely happy that their children are happy and healthy, that they have such a bright future and are learning new skills daily?
If Tori were still able to do those things, if Tori were still healthy and growing, I would hope that they could celebrate with us.
Our culture has become far too hypersensitive and it has reached a ridiculous point. It has to stop. It is a choice to be offended.
Why can’t we celebrate others’ successes even if we aren’t currently experiencing the same success?
Whatever happened to personal responsibility for our own emotions, actions, and everything else?
I cannot stand how easily offended people have become and how they expect the “offender” to take sometimes drastic measures to ensure that they don’t “offend” ever again. (This isn’t my first post about this topic – see another here.)
I would NEVER put the burden on others to make them feel bad about the fact that their kids are healthy and typically developing. That is selfish and cruel, and I believe it is also sinful.
On those days when I am grieving, I choose to take responsibility for my sensitivity. I may need to ignore Facebook posts occasionally or hide the friend from my News Feed for a while, or even stay off of social media for a while, but my friends don’t need to know that.
It is MY responsibility to deal with my own emotions and not steal another’s joy with my selfishness and jealousy.
What good does it do to make others feel badly that they have what I so desperately want?
If I want people to put themselves in my shoes, I need to do the same for them. And that includes being able to celebrate with them when things are going well and take personal responsibility for my own emotions on the tough days.
______________________________
To our friends who are parents – we are genuinely thrilled for you and your growing families. We are so thankful that you don’t have to endure the trials that Brennan and I are enduring!
I may not comment on every post or photo, but I do share your joy most days, in my own quiet way. ❤️
Please take joy in your precious children! Don’t let anyone steal that joy from you.
Thank you for your love and support of our family throughout the past year – it means more than you know.
Even So, Joy 
Honest caring and totally understanding. I can also understand how some days it must hurt. Keep on doing the wonderful job you do with Tori. Know that we care and kove you all. God Bless
LikeLiked by 1 person
Good word. Honest post. Thank you. Praying for you always.
LikeLiked by 1 person
Lesa, you are amazing. I don’t know why you have been dealt the hand you have, but I do know that te Brackbills are changing the world. Your grace, your vulnerability, and your joy are impacting all of us who read your blog, look at your photos, and see your status updates.
LikeLiked by 1 person
As a mother of a child with a completely different, but extremely rare genetic mutation (SCN8A) this blog spoke directly to my heart strings. It’s so incredibly hard and you nailed the sentiment perfectly. Many prayers from our family to yours! xo
LikeLiked by 1 person
This post is SO WELL WRITTEN, you are right its a post that needs to be heard! Thank you for again for sharing from your heart! Your amazing courage and strength through all this is a inspiration!
LikeLiked by 1 person
Your powers of perception and analysis are truly amazing. Your words are affirming to those of us who have had a special needs child in our family. Likewise, they help to educate those who have not. The situation is awkward for all concerned, even within one’s own family. Openness and honesty, as you have chosen, is always best.
LikeLiked by 1 person
Lesa I follow your posts, your updates, and your journey through Brennan. I just want to tell you, your daughter is the most beautiful little girl I have ever seen. Her story is remarkable and I believe she is changing how the world sees a disability. Your journey, strength and faith has brought witness to not only her life but also many others that share her same fate. While her life maybe short, it has had an impact, a big one! I love your little girl, yet I don’t know her. There is something within the depths of her soul that reaches beyond the disease and transcends to every parent with a special needs child. My journey may be different as we battle Type 1 Diabetes every day, but this post, I needed this! My prayers and love continue with you and your family. I rejoice with you in the good times and I prayer extra hard during the tough times. Thank you for your transparency and inspiration.
LikeLiked by 1 person
I love this, and wish that I could verbalize my heart as well as Liza just did! Lesa, your post was honest, but also completely understandable. Thank you for being such an incredible testimony through this journey. I know that you are not walking it alone ❤
LikeLiked by 1 person
How I wish I could somehow share the sorrow in your heart…….please know that YOU are prayed for, that you will continue to experience every bit of joy and love that surrounds your beautiful angel. Your generosity in sharing yourself is overwhelming to me personally and I shall treasure every morsel of Christ like wisdom that eminates from your being. YOU are a
rare soul………I am blessed to be a small part of your journey.
LikeLiked by 1 person
Lesa, I enjoyed this blog. You do not know me, but I am Courtney Zeppuhar’s Mother. I agree with you about the over-sensitivity our country is going through. Yes, we can try to be loving and kind towards those who are having issues, but to be afraid to share joyful times with others because someone may not be having a so-called good life is nonsense. I agree we should be joyful for others accomplishments and blessings, even when we are in grief. God has given you something that not everyone experiences, but we as Christians understand that we rejoice with others and sorrow with others. You have been a blessing to me. Thank you for this very thoughtful post. By the way as a Nurse we were taught to empathize with people because we cannot know exactly what that individual is going through, but we can try to care about what people are experiencing.
LikeLiked by 1 person
Honest and beautifully said!
LikeLiked by 1 person
Lesa,
As always I want to thank you for your honesty and transparency about your journey with Tori and Krabbe. I have been meaning to reach out to you lately and thought this might be the perfect opportunity.
Over the last several weeks God has given me an undeniable burden to pray for you, Brennan, Tori, and your parents and in-laws. I want you to know that I have been praying fervently and daily for you guys. I found your blog so moving because, while you feel it important to remain sensitive to your friends and community and to celebrate the health of our kids, there are those of us that enter in deeply with you and Brennan and your family in the grief. I never knew about Krabbe until Tori’s story and now, I hate it with a passion. In fact, I can’t remember the last time I’ve prayed so fervently against something and each time I pray I feel this war cry to fight again Krabbe for your family, and the community at large. As you celebrate with us for the health of our children, I grieve deeply for your family and everything this awful disease has stolen.
We can grieve, and celebrate together. That’s the role of the body of Christ and there are seasons for both. I am battling daily for you guys and please, if there’s anything specific I can add to my daily prayers, let me know.
I’m honored to stand with you guys in prayer.
With my love, my joy, and my grief..
Johanna
…and the greatest of these is love.
>
LikeLiked by 1 person
❤️ thank you so much!
LikeLike
Of course! And I totally thought I was sending you a personal email, I didn’t realize I was posting a comment on the blog
I replied in an email through the update. Doh!
LikeLiked by 1 person
Dear Lesa,
God is doing such wonderful work through you, Brennan and Tori. You choose to grace others with His Love, even in the midst of your own trials. Thank you for reminding me of what an honor it is to be a parent. If there is something that my family can do for you, please let us know.
Katrina Boucher
LikeLiked by 1 person
Dear Lesa, Victoria and Brennan:
Through your Life’s Journey, I have truly began to treasure each second of every day, each breath, each blink of the eye to water the eye, each heartbeat, each one of my prayers, which is sweet incense to YHVH our Father and are contained in golden bowls, each tear shed which is stored up in bottles, each burst of laughter, even in the midst of sadness!
Thank you for allowing us to Journey and to learn in a tiny part yet huge way with you all.
Yahshua cries and laughs with you and us.
We continue to ask, seek and knock on the Door of the Way, the Truth and the Life for Victoria Ruth Brackbill!
xoxoxo
LikeLiked by 1 person