Thursday, August 22, 2013

Mabel update [the lucky one.]

I haven't specifically blogged about Mabel in quite some time.  Sadly, lately, it is hard to know what to share and what not to share.  There are people who are reading here who aren't actively in the children's lives and it almost feels unfair to keep them updated in such an impersonal way.  My heart breaks that this has become a platform for excuses and for the people who should want to be most involved to just simply sit back and do nothing because they feel like they know what is going on in their lives already.  I am desperate to start writing again but I can't quite seem to find the balance yet between what I want to share, should be able to share and yet what I want to remain very sacred and private to the kids and I.
That being said, I do feel it's time to post an update on my littlest love.  There are things that are very much still the same with Mabel.  She still smiles, she still weighs roughly 17 pounds, she still functions at a 2 month old age level, she is still seizing, she is still jerking, she still takes more medicine than any human should have to, she is still quite a mystery on most days, she still cries more than anything else, she is still drinking from a bottle on her good days, she is still choking on her bad days, she still loves to walk in the stroller, be pushed in a swing and snuggled into me.  She still loves music, she is still getting teeth, she is still [and always] the joy of my life.
With all that remains the same, there are also so pretty drastic changes with her from day to day.  She is no longer sitting at all.  In fact the last time that I have a photo of her doing it was in January.  I feel like it's a rapid decline and it makes me sad because we worked so hard to see her do it.  She has had a huge increase in secretions, which causes a lot of the choking that happens.  She is 'foaming' at the mouth more now than ever.  Her eyes have started crossing multiple times a day and I'm unsure why this would be happening.  I feel like her vision is on a fast decline so I assume this is part of the issue but it's always hard to tell.  She has started to fall asleep at random times throughout the day and in random places.  This is something she did as an infant but not in a very long time.  In fact, sleep doesn't come easy for Mabel.  Her brain just doesn't tell her when it's time to rest or be awake.  So to see her sleeping, although restful and relieving for the both of us, is also conflicting and sad for me.  
Today I was thinking back over the last several months and I realized that Mabel has been on hospice for 3/4 of this year.  When I chose comfort care for her, I ultimately did the same for me.  I have never felt more relieved, supported or strong in the decisions that are involved with caring for Mabel.  Every day I am reminded in some small way that very hard days are ahead for myself, the big kids and for Mabel.  Her care will become harder to manage.  Her body will become more weak.  She could get sick, she will not recover, she may stop eating, she could choke or aspirate.  There are a million things that could ultimately take this little girl from my arms and into Heaven but the truth of it all is that I am no longer fearful of any of them.  The truth is that I still serve a God who is in control and although there have been times of question this year, those questions never resulted in the disbelief, distrust, or unbelief of this perfect plan...
Some days the hardest part of this entire journey is knowing that I am now doing it alone.  I am thankful for that in so many ways but in those very real and fragile moments where my girl shows me a scary glimpse into the future, I am reminded that there might not be anyone by my side in the moments when I most needed there to be.  That's a very hard and painful reality and it still troubles me deeply.  I try hard to focus on the truths that the Lord surrounds me and protects me and is near.  He comforts the brokenhearted and goes before those who are mourning. 
He is still God and truly He is still here. 
Today I breathed Mabel in deeply.  I gave her a bath, took her for a long walk, laughed when she laughed and sang to her when she cried.  Today was a brilliant and beautiful day and I would never trade these moments in for anything that this old world could offer. 
For sure, beyond a shadow of a doubt, I am the lucky one...
And I am thankful.

1 comment:

AJF said...

I am, still, awed by your writing abilities. Take your time and only share what you feel to be "shareable" : )
I love you and wish, wish, wish we lived much closer so I could be a part of this family and this journey.