We arrived at the hospital yesterday morning at 5am.
It was dark
low lighting and a bit eerie.
By 7am, Bella was ready to go. The anesthesiologist came by to insert the I.V. and well, Bella completely freaked out.
Tears, thrashing, and so much pleading.
The anesthesiologist decided that it would be better to put the I.V. in after she was under anesthesia. We thought that was a good idea as well, although, what we DIDN’T know was that it meant that she would have to go through those ominous OR double doors completely conscious
Without her Mommy and earthly Daddy.
So, she began to cry, tried to be brave, and clutched her stuffed animals as if her life depended on it.
And that, my friends, is an image I am pretty sure I will never, ever forget.
Martin had tears streaming down his face, and I just broke down
Her surgery lasted two hours and the results were better than we hoped for – sort of.
They (as in our surgeon as well as LPCH) decided that Bella’s immune-compromised body could not handle both the severing of bone and its reconstruction PLUS the elongating of tissue and shaving of the bone.
So, they decided just to do the latter. And the decision was made that the former would be addressed via the “long road” – through especially constructed orthopedic shoes and braces she will have to wear at night. And if, by the age of 14 when her bones stop growing, her feet/legs have not self-adjusted, she will need to have another surgery.
So, here I am, filled with mixed emotions about all of this.
Let me start by saying, that I trust our team at LPCH. They have proven time and time again to be always putting our daughter’s well being front and center. They go out of their way, with world-reknowned nephrologists calling me from home – on their days off – to check on our Bella and to make themselves available to us.
And yet, my Mommy heart kicks in.
How is Bella going to handle all of this? She is already highly aware that she is “unique”. What will it be like for her to have to wear “special” shoes, have braces on her legs for sleepovers, not to mention, more scars on her beautiful body?
So, I grieve for her. Again. And again. And I find, once again, that my role is an important one – to instill in my daughter a sense of where her worth truly lies, to recognize and name her gifts and talents and abilities and to her praise her ceaselessly, to pray for her – that she might meet some lovely friends who embrace and accept her and also recognize her gifts and her offerings to this world.
My daughter had to carry a lot already, and now her burden has become greater.
After Bella came out of surgery, we were amazed that – for the first time ever – Bella did not have nausea or a scary episode of disorientation. She awoke as if she were coming out of a nice, long, sweet dream.
Miraculous! And the surgery went really well!
We spent the next 14 hours in recovery. We worked diligently to bring down her blood pressure and to get her pain under control. And it took 14 hours to do so!
We had some tough moments – the reality of what it feels like to have casts on both legs, to not be able to walk, figuring out how to do things we take for granted, like going to the bathroom!
We talked. We talked about people we know well, for whom this is their everyday life, and how we admire them all the more for it.Side note:: Isn’t it fascinating how sometimes it takes a similar experience before we truly can appreciate and grasp what life is like for those around us?!? Isn’t it quite an otherworldly gift when we experience empathy for one another without that similar experience attached to it?
By the grace of God, we were FINALLY discharged (the discharge ritual took 2+ hours!) around 10pm last night. And of course, the discharge had to be dramatic and bombastic with the removal of Bella’s I.V. causing a fountain of blood to gush out, Bella screaming and almost passing out, and a nurse who tried to convince us that what we were experiencing was “normal”.
As I write this, Bella is sitting on the couch playing wii – a new game we torturously made her wait to play until after surgery.
We are traumatized and weary.
We are grateful for God’s mercies and provision.
We know, that we know, that we KNOW God is with Bella, in her innermost being, when we cannot be there for her like Martin and I wish we could.
And we are grateful for His gift of community – our village.
We are not out of the woods yet..
We have a long road ahead. We have to be very diligent in looking for signs of infection or DVTs, which kids like Bella are so often prone to post-surgery. As you can imagine, the novelty of getting to play video games and watch movies all day will wear off!
Bella will be in some form of a cast for two months, with the non-walking cast for about a month.
We also are working on Bella’s mental health, so she is in therapy this summer. We believe this is absolutely VITAL for her – she needs a place to work through this trauma so that she can fully become all that God intends for her to become.
She has a story to share with the world.
Can you sense the emotion behind this as I tell you how grateful I am for all of you? Do you realize what an incredible and profound impact you have had on our family? Can you believe me when I say how humbling it is for us? The tears just flow. There is just no way we could do this – me especially – if it were not for a God of comfort, mercy, and grace and