Thursday, October 15, 2020

On the Day She Turned Two Months


She had her first out-patient procedure.

We are here in Denver as I type this post, and she's under anesthesia. This morning began a series of things in a search for more answers and a plan to proceed.

Originally, doctors were going to remove a skin tag in her diaper area.  However, in thinking more about it, they decided to wait.  Based on its size and the unknown intricacies of her vascular malformation at this point, they didn't want to risk the bleeding at this point.

Also, we have seen a bit of oozing out of her belly button, so they have ordered a renal ultrasound to rule out a couple of things with that.

They have completed the vaginal and rectal exploration, determining surgery is not necessary in either place - praise the Lord!  And, she's currently having an MRI of her abdomen, pelvis, and spine - as well as an MRA of her abdomen and pelvis.  All of that imaging will help us see exactly where the spinal cord is tethered, how deep and intricate the vascular malformation is, and if there are any other issues that we might not currently be aware of.  

So, we wait.

In our two months of waiting and finding answers, of wondering what time will bring and of trying new things to make her more comfortable, I have learned a lot.  And while our cross is not someone else's, and knowing there will always be someone with a much heavier cross, God has revealed so much.

I've learned...

...there is still so much goodness and beauty to be found...even though her body is broken in ways, her soul is whole, and she brings us so much joy.
...when people offer to help, it's important I let them, as much I may feel guilty I am not able to help them right away in return.
...that Jeremy and my relationship has never been as important.
...there are days when I basically seem to have a good handle on things and days that hit me out of the blue to remind me life is peaks and valleys.
...sometimes it feels like I can't possibly think of anything else. issues in one child can cause me to feel like I can't find a good balance in taking care of the noticeably sick one while also meeting the needs of the others. comes in so many forms: meals, prayers, texts, calls, caring for kids, sitting and visiting, or even caring for your helpers.  But, it's important to let others help in the way they feel called (have I mentioned I struggle with this, hehe?!). 
...a million cares and concerns can be eased with the weight of a sweet baby on my shoulder.
...we are never alone.
...God prepares us for these moments years before we face them and He gives us the grace necessary for the moment (maybe not the year, or the day, or even the hour to come)...but the moment He has covered.
...miracles and affirmations aren't always what we envision, but if our eyes are open, they are all around.

More than anything, I've learned this... is important to reach out.  

I've spent my life not knowing exactly what to say.  I've "put myself in someone's position" and convinced myself they want to be left alone or not bothered.  I've never been able to "understand what he/she was going through."  And so I haven't sent the text.  I haven't made the call.  I haven't popped a note in the mail to let someone know simply that I care.  I haven't stopped by to give a hug.  And, I've realized doesn't matter what you say (by and large).  It doesn't matter how you show your love.  It doesn't matter if you were "never that close".  There is nothing too small.  Reach out.

Say something.

I have learned that so beautifully in the last nine weeks, and the only way I can describe it is humbling.  To feel encapsulated by prayer and love is indescribable.  I sit here and think, "How will we ever return all of this love?"

But, I know this.  Our strength has come from the prayers of hundreds/thousands of people...many who we don't know.  When people say, "I don't know how you are doing this."  I do.  Because of you.  God through you.  

Thank you.

(a few days later...)

She came out of anesthesia like a champ.  She was downing the sugar water and "talking" to anyone who came to her bedside.  

The next day in our meeting with dermatology we learned there is not much more we can do for her ulcers.  We are doing the best we can, and they may heal or we may struggle with them for some time.  Only time will tell.

The following day was full of appointments to discuss results.  

We learned that her vascular malformation at this point does not appear to be very deep...a huge answer to prayer!  There was a mass on the scan that they thought was worth doing bloodwork on - it came back clear, praise God!  Her kidneys also looked great!

The spine was a different story.  Her sacrum is very "messed up" and her spinal cord tether is one of the most complicated cases they've ever seen.  The neurosurgeon is unsure if he will be able to de-tether it, but he will try!  It will likely pose problems with bowel and bladder control as well as mobility.  

But again, we wait, and we pray.  And we do the very best we can with God's grace moment by moment.  

And we ask God for healing, because miracles do happen.

No comments :

Post a Comment