It was a mixed day today. Delaney was fairly quiet and slept most of the day (She sleeps most of the time anyway). However, a few good friends stopped by. With their help and the help of family we got a little respite.
My Dad stopped by complete with a massage table and gave me some relief of all the tension that has been concentrating in my back and neck. It's hard when the weight of our little one's world is resting firmly on our shoulders.
My Mom also came with a dear friend, Rosemary, and shared stories of a beautiful girl who has overcome many similar challenges of her own. We hope and pray and wish that the tenacity and strength of our little spitfire will pay off and she will get back to her family in the way we were growing so accustomed.
We got further respite from the uplifting nature of two other close friends who came by to shoot the breeze, play with Delaney, and continue to warm this house we love so much. George and Roy didn't disappoint. Their good nature, cheery smiles, and good ears came in handy. I have always loved Roy's easy laugh which is so contagious. He has a smile and way about him that just makes you feel good. George, who is a gentle giant cut from the same cloth as me was nothing short of brilliant with Delaney. He played with her for the entire time he was here. Rubbing her back and giving her arms and legs a good "workout". It was neat to see how she responded to gentle nudging and tugging at her little hands and feet. Our friends, angels - both of them.
Cece, who has become another one of our earth angels brought by some nourishing fruit, juices, and one of our favorite snacks...hummus and pita bread (now I know we will be inundated with buckets of hummus to be sure). We were not only touched by her generosity, but she sat with us and shared in the worry and tragedy of all of this. Like others who want to be "strong" and be the shoulder for us to cry on, she expressed her feelings too. Not to be confused with weakness, as there is such beauty and strength in that act.
Our situation is incredibly difficult, totally unfair, and the outcome is uncertain at any given moment. We pray so hard, and ask God so fervently to make it right, fix our little girl...she doesn't deserve this!
We feel "heavy" today. We had such a challenging night last night which lead to an exhausting day. It seems that the pace of keeping up with Delaney's care regimen is catching up with us. It makes it really hard to stay optimistic when the repetitive call to action looms; with feedings, medicine, and general checking in occupies your mind. We have to remind ourselves of the little gains, and hold on to those moments for we do not know how long this healing process will take. We have to shrug off the bleakness which leaks into our minds.
It's really tough when you think about the kinds of activity a baby should be engaging in at this stage of development, knowing that she was just getting in the swing of growing, learning, and changing when she got hit with a ton of bricks. I wish that we had some guidelines for this. Something to turn to that would be able to shed some light on what we can expect from her this week and next. Sadly, it's just not how brain injury works. Not even the worlds leading neurologist would be able to predict what will happen with her. I appreciate that WE know so little about the human brain, but we know even less about what Delaney's brain may be doing to heal and overcome. Either way she needs time, and we need time and patience.
The hospice nurse, Scott, visited today. He's a good man. Gentle in his way with us, always careful not to offend our faith and respectful of our space. He, like so many others we have worked with of late, is in the right field. It takes a certain type of person to deal with the uncertainty of helping an ailing family member. It was nice to hear today how he holds himself neutral. He commented how he has been surprised by patients in the past. He accepts our optimism about Delaney, yet he also listens to our fears.
So this evening, and for the rest of this week we really hope that you will be able to share on our prayers for strength, and rest. We have a lot of work cut out for is and we need to be able to walk away from all of this craziness at least once a day.
We love you all so much, we can't do this without you.
B & L & d