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!
Even So, Joy 
Tears in my eyes as I continue to pray for Tori – and all who love her. We know God has a plan. We are thankful to HIM for his eternal LOVE ❤
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Your courage is remarkable. We will continue to pray for strength, peace and understanding.
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I am so relieved to see this confirmation in you both. As a retired hospice nurse, I am happy to see you come to terms with the fact that death is not to be feared but welcomed, specially for Tori. It is true, death is not the enemy.
Too many believe it to be avoided at all cost. That saddens me. It is unavoidable and only feared because of the unknown on the other side. It is a part of life, just as birth is. The end only for the here and now on earth. The end of pain for your Tori, not the end of love for her. Death is like a door we walk thru, like all other doors, to another place. Walking into kinder garden without our parent to hold our hand, for many a child was so scary. Walking into the first dance at school, walking into the Dr or Dentist, or that new job.
So many doors we feared through out our lives. Death is the scariest. For two reasons.
One being the selfishness of the living… And to a point, it is ok to be selfish when love is involved. The thought of no longer having that person here with us in our lives. no matter what the beliefs of after-life, brings utter anguish.
And two, because again, what ever our belief of after-life. We just don’t know what is on the other side of that door.
There are as many different beliefs as there are types of personalities. It has been given so many names that come from so many places.
The details truly are of no consequence really. Because it is what it is, despite all the different beliefs. And we will only truly know what the experience entails, after we our selves “walk” thru that door….
I guess I decided to post my feelings on the matter when you kept praying for God to use Tori to “show his Glory and ability to perform miracles”. All I could think of was, the time Baby Tori would spend in pain, with her life prolonged, waiting for that miracle.
So, death can be seen as that miracle that heals her? The miracle of death… I feel you have come to that conclusion and I am relieved. That is obviously how our creator planned it after all….
Sending hugs…
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Well, I wouldn’t say that we would call her death a miracle by any means.
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I say this with so much love, respect and empathy….
There comes a time in life, when we look upon the one we love and we know it is time, that death is imminent. Why do we have to hate it, fight and curse it? We were created in this way…. to be born perfectly into a life of imperfection of self and environment. I truly believe this because I see it. Everyday of my life, all around me. The plan for all life, the perfection, surely can not have been an accident/coincident. It was a miracle of creation. but with it came imperfection (as we see it) as well. and death. Birth, Life and Death here on earth… The creator knew that death of all living things was just as important as the birth… See the miracle of death for what it is…. Throw away all your preconceived notions about it being negative… bad. Believe that God gave your baby the miracle of life and just as equally, the miracle of death. The alternative is unthinkable… never dying? Gods plan of life for us was amazing all the way from beginning to end. When death was created, it was not a negative. It was a positive thing, a perfect thing, to the creator. Because there was a plan and the plan was perfect and no mistakes were made, then surely death too has to be recognized as part of the miracle. Please try and ease the pain and heaviness at the thought of it and try to embrace it as a gift. We all must leave this life we know at some point or another. The terrible pain and stress you feel at the thought doesn’t have to be there (not at 200% anyway). Trust that God did the right thing.
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I know you mean well, but the death of a child is not a miracle to any parent, but it happens and it happens for some unknown reason. No matter what your faith is, how deep your faith is, nor your belief in a life after this one…death is painful! Watching a little baby girl deteriorate before your very eyes has got to be abosolutely the worst pain ever! Yes, death has it’s purpose…the whys will remain unknown until we leave this earthly life, but it is not a miracle. It is a nightmare even if you think you are prepared. My mother was 85 years old when she passed, I had many years caring for her, I knew she was dying at the end..I still begged God for a healing, for more time, for one more hug! My heart is still broken even after almost ten years. Death is not a miracle, it is death and it sucks!
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Dear Ones, my heart is broken for your baby and the situation surrounding her..You both realize GOD is in total control. I just pray as you are praying, for a complete healing or to take this sweet baby home with Him. I cannot imagine your pain. Will continue to pray.
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Reading your words always breaks my heart. I’m so sad and tearful that you have to make these decisions about your baby girl. I can’t even imagine what you are feeling. I am praying for you all, everyday.
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Such a powerful post! So many prayers for all of you and your precious beautiful baby girl!!
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Reblogged this on Nuggets of Gold and commented:
This is such a touching, powerful post! Please continue to keep this dear family and beautiful baby in your thoughts and prayers! Thank you!
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What deep heartfelt transparent words….Your courage and grace are to be admired. You have faced your challenge with strength and as well, heartfelt agony….Your family is in our prayers…your baby girl is in our prayers…..No I cannot imagine what you are feeling but I can pray without ceasing…May the good Lord bless and keep you….
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My friends David and Stephanie Dollar shared your prayer request in our class at church. I have been reading your blog and praying for your family and precious Tori. I am amazed and inspired by your faith and courage in this difficult time. Thank you for sharing your journey.
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Thank you for your beautiful post. Your willingness to share such a difficult journey undoubtedly will have impact beyond what you will ever know (this side of eternity). Dear Heavenly Father, surround this beautiful family in your arms. Give them a peace that passes all understanding. Thank you for the blessing of Lesa and her passionate love for you Lord. Amen.
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Amen! I pray that you are able to make beautiful, precious memories with your sweet girl in the days, weeks & months ahead. When I think of the joy that is heaven, I can only conclude that grief is–in some ways–a selfish emotion that tests our humanity. Our loved ones (especially our babies!) undoubtedly are overwhelmingly loved as they are with Jesus.
Hoping that you have help in your days with Tori…a boba or ergo baby carrier would help to physically hold her close to your heart and bring both of you comfort as you care for her, assuming it is comfortable for her. Simple routines that (for me anyway) seemed like monumental tasks–things like a daily shower or a walk outside or the likes–also may help keep your stamina for the marathon days ahead.
Praise God for Jesus and ALL the promises of heaven! Peace and love to you!
~~Laura
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