It has been a long two weeks. Two weeks ago this evening we took her to the ER and this nightmare began.
I’ve hesitated to try to put my feelings into words on here because (1) typing them makes it feel so real, and (2) it will probably make me cry. But, I want to be real and not appear to be a faith-filled super mom who isn’t emotionally affected by the deterioration of her baby. I have cried more in the past two weeks than i have in the last twenty years combined.
Denial is the easiest place to be right now. Ignoring the MRI results, ignoring the fact that our baby’s brain is not functioning properly. Ignoring her feeding tube (while still caring for her, of course). It’s just how we’re dealing with all of this for the moment.
The thought that our beautiful, happy, smart, talkative, smiling baby may never be returned to us is beyond devastating. When I see the videos of her from a couple of months ago it brings tears to my eyes because I miss her SO much.
Being a stay-at-home mom to Tori has been the best thing that I have ever done. She has brought me so much joy and I can’t believe how much I love this little human. Obviously, I still love her and that will never change. But I miss her. I miss her personality. I miss watching her learn new things. I miss her smile and her squeal when she was excited.
The thought that she might never be like that again is more than I can bear. I know Brennan feels the same way. The thought that she might never recover is unfathomable.
We are pleading with God to do a miracle – to completely heal her brain and give her the best possible quality of life. If she ends up being a person with special needs, we will rejoice in the fact that we at least get to keep her here on earth with us.
For now, I am living minute by minute and cherishing my time with her. We are celebrating the little things – like her improvement in terms of eating with the feeding tube and other little things. Thinking past today becomes overwhelming because we have no idea what we are facing.
We are certain that God has a purpose for all of this, and we know that He loves her more than we ever could.
We were told about a clinic in Milan, Italy that is the only place in the world currently treating kids with certain types of leukodystrophy using stem-cells. If that ends up being her issue, you better believe that she and I are headed there. They have apparently successfully treated 13 children thus far.
We are also SO encouraged about how we have been connected with several specialists and experts already just through people sharing Tori’s story on Facebook. And Team Tori day was incredible! Seeing all of the photos with the sign was such an encouragement because we were reminded that she is being prayer for by thousands of people.
Yes, we are in more pain than we have ever experienced before, but we also are constantly reminded – and remind ourselves – that our God IS greater than this. He created the whole world and has raised people from the dead. He can easily heal Tori if it is His will.
Oh Lord, we continue to plead with you for a miracle, for a complete restoration of our beloved daughter’s brain and body.
You have set the stage perfectly for something magnificent to happen and for thousands of lives to be impacted through the healing of our Tori.
Her doctors would be astounded to see her suddenly able to eat normally, to talk and smile again, and to develop as a six month old should, given her potential diagnosis and the hopelessness that comes along with it.
Lord, we prayed for her to be given to us for years. You were faithful and gave her to us last July, and we have cherished each day with her and will continue to do so. Lord, please repair her brain and restore her!
Please heal our Tori and use her to change the world before she can even talk!