What Will (Likely) Never Be…

Most days, Brennan and I do well with our reality regarding Tori. I’m not a very emotional woman normally, so it has been fairly easy in the past couple of months to adjust to our new normal and get through daily life with Tori, even if we’re numb some days.

Since we are around Tori far more than we are around other babies, it also makes it fairly easy to forget that she is so sick. She is our “normal” and we forget that she really isn’t.

We don’t focus on what she can’t do; instead, we celebrate every positive thing, every little thing she is able to do, and we cherish each and every moment that God gives us with her. God gave Tori to us and we will love her with all that we are and all that we have until He takes her home to be with Him. We have made a conscious decision to not be miserable, but instead to make the most out of this situation, whatever the future may hold. 

However, there are times when we are reminded that she is anything but “normal” and those moments are sometimes difficult.

We have a few local friends with babies who are within a month of Tori’s age, and it is when we see them that we are reminded. I want to make it clear that we do NOT resent those friends or feel sorry for ourselves when we are with them (nor do we want anyone to feel sorry for us) – instead, we choose to celebrate with those friends because babies/children are a blessing and a joy and their milestones should be celebrated and remembered. We don’t wish our situation on ANYONE.

But, it is in those moments that we are reminded not only of all that Tori can’t currently do, but also the fact that, without a miracle, she will never do what those babies are doing. 

It is an odd feeling to be simultaneously excited for others but also deeply hurting for your own situation.

Then the pain returns…an indescribable feeling of painful desperation, willing with everything within me for the situation to change and for everything to be fine. For Tori to be crawling, getting into everything, teething, learning. For Tori to grow and become a beautiful woman. For me to be able to be not only a mother, but Tori’s mother. Forever.

Then I think about the fact that I may never be pregnant again. I think about how desperately I wanted to be pregnant with Tori for those TWO YEARS of trying…how elated we were to finally conceive…how much I loved the experience of being pregnant…and now those feelings are sharply contrasted with the fear and grief of knowing that getting pregnant again is a huge risk…of being unsure that we even want to have (or obtain) any more children if we lose Tori.

In those moments, I cry out to the Lord for mercy, for peace that surpasses understanding, for clear direction and wisdom, for a miracle that can only be attributed to HIM.

Those moments awaken my emotions for Tori, Krabbe, and her future, and I am reminded of the severity of our situation and of our helplessness without the Lord. It is hard to describe the hurt, but it is something that I physically feel in those moments.

We don’t hide from the pain – hiding doesn’t bring healing (for ourselves or for Tori). Thankfully, we do well most days and these moments of pain and mourning are infrequent for the time being. And we don’t seclude ourselves from our friends and their children. Instead, we choose to love those children and be excited as we watch them grow and develop normally. Just because our baby is sick doesn’t mean that we should be bitter and angry about healthy children. 

It’s best to just focus on today, to focus on how well Tori is doing despite her circumstances. Thinking about the future only brings pain that isn’t meant for today. If Jesus takes her home, we will certainly grieve then, but we will also rejoice because she won’t be suffering any longer. We will rejoice that her little life has impacted so many, including our own. And most of all, we will rejoice because she is made perfect in Heaven and will be there to meet us someday.

7 thoughts on “What Will (Likely) Never Be…

  1. “For me to be able to be not only a mother, but Tori’s mother. Forever.”

    You will always be Tori’s mother. ❤

    God chose you to walk with Tori through this valley. Thank you for sharing what He is doing in your lives and for sharing your grief and sorrow and allowing other people to do what they can for you all. Praying for you all!


  2. Praying for you guys and your precious baby girl. I see her everyday on facebook and she is always on my mind. You are such a strong woman and I thank you for sharing your journey with us your faith in God is just awesome.


  3. Hugs, prayers and Gods amazing healing power sent to rain down on you and your precious bundle of love ❤ Stay strong and know you are loved ❤


  4. I identify so strongly with what you have said. I was just sharing with a friend today about how people used to ask me how our Nathan was doing, and I’d start going on about something he was doing, or how well we felt he was getting along.
    Then all of a sudden I’d see it in their eyes: “What? How can she think he’s doing so well? Look at him!” And then I’d realize they didn’t think a 6 year old, or a 12 year old, or whatever, who was developmentally 2-3 months old, could do NOTHING, and weighed 15 pounds could be considered to be doing well.
    Oh, but he was! He wasn’t in the hospital, he was happy, he knew who we were…many things were reasons to feel happy about how he was doing. Many reasons to thank God for each day.
    We rejoiced in him, just as he was,because God gave him to us. I am his mother, forever and ever. And so will you be for Tori. If she should precede you to Heaven, she will know you when you arrive, and the reunion will be joyous. I am looking forward to the day when I get that first hug and love from my child who could never hug me or speak my name. I know it will happen for both of us!


  5. Lesa, as I sit here and weep for you, I also praise the LORD for you and your family. Your testimony and strength is incredible and inspiring. I admire your perspective and agree completely but that comes much, much easier for me as I am not experiencing what you are. You are a beautiful woman who is greatly impacting the Kingdom! My husband, children and I pray for “Baby Tori, and that God would heal her and take all her owies away.” We will continue to take her to the throne of our Almighty and all powerful God and ask that He bring full healing. Thank you for your authenticity, may God bless you and your precious baby girl.


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