Brennan and I have gone through what seems like a lifetime of emotions in the past three months. From such joy and love in seeing our baby grow and learn, to sorrow and grief over her terminal diagnosis.
We are living out our wedding vows in a completely new way – “in sickness and in health.” I never thought about that applying to our children as well.
It is so easy to love a happy, healthy, growing, developing baby. My heart would overflow with joy when she would smile and laugh and babble. It was effortless.
Now, with a terminally-ill baby girl, I am finding that loving her is completely different. It looks different and feels different. My love is now protective, fierce, strong, desperate, deliberate. It is now focused on helping her manage her pain rather than helping her learn new things. It means that I must choose to show love and grace even when she doesn’t let me sleep, she cries often, and I can’t put her down.
In my exhaustion and desperation, in my moments of grief and sorrow, I have to choose to love her and put any feelings of frustration at the situation aside. I have to remember that she is the one in pain, the one whose brain is deteriorating, the one who is losing her sight and other functions.
And in those moments, I cry out to God and pray for two things: first, that He would completely heal her and show the world His power through her little life; second, that if He chooses to take her home with Him, that she wouldn’t suffer and that He would do it sooner rather than later for her sake.
Brennan and I have talked about the “what ifs” and the possibility of needing to plan a funeral. Of needing to decide upon a burial (but where?), cremation (a thought I can’t handle), donating her body to science if it would be beneficial for Krabbe research, or an alternative (did you know that you can have ashes made into diamonds?). We hate talking about these things, but we also don’t want to be making these plans in the midst of our grieving.
We also talked last week about the fact that, even though we desperately want to keep her here, we know without a doubt that Heaven is the best place for her – and any of us! No pain. No sorrow. No sin. No hardship. She would be able to hang out with Jesus and would be there to meet us whenever it is our time to go.
God has given us such a peace about that possible outcome, as undesirable as it obviously is. He has reassured us that, no matter what, He wants what is best for Victoria. While we can’t see how that outcome will bring good to our lives, we at least see the good in it for her.
And so we continue on this undesired journey, taking it one day at a time, trusting the Lord even when we don’t understand and don’t like what is happening. Our faith has become so much stronger already through these last two months, and I know it will continue to grow.
We continue to love her and to love each other, and, most of all, we cling to the hope of a complete healing for our baby girl. He is able to do that and so much more!