Monday, February 5, 2018

Silver Linings

Though we continue to walk a hard road right now with little girl... we can look around and see little silver linings in the hard.
 
The prayers, kind e-mails, words of encouragement and private messages that have been sent our way over the past few weeks. They are silver linings.
 
 
 
She is no longer pinching and hitting every five minutes. Another silver lining. 
 
Instead of pushing me away in frustration and anger, she has moments now where she wants to be held.  Huge amount of silver there. Each morning I get the joy of gathering her in my arms and holding her as she drinks her juice. Rocking and holding and kissing her little face as she drinks. Precious moments. I don't take them for granted.
 
 
  
Another very important silver lining for us is that we qualified to receive assistance through a program here in Virginia. This means that we now have an extra set of hands in our house to help us with little girl. Those hands are priceless and I am thanking the Lord for the help they are giving.  Rob and I both work from home, but since Mary has been here I have not been able to do any work. We have a new book coming out in a matter of weeks and I am so behind on what I need to do for this book that I was starting to drop into a dark hole of depression. This week I have been able to start chipping away at that mountain of work and already am feeling mental relief from everything.
 
 
 
Every night before she falls asleep I go in and sing Jesus Loves Me to her. She will often reach up and wrap her arms around my head while I sing and will sing along with me in her funny little manner. When I'm finished she grabs Pooh Bear and holds on to him tight and burrows deep under her covers. We sing Winnie the Pooh together and then I cover her with kisses and walk out of the room with her protesting loudly until she drops off to sleep.
 
 
The singing. The kisses. The hugs. The protesting. They are priceless silver linings. They make me chuckle every single night. They bring a smile to my face no matter how worn down I am.
 
We have been blessed by these silver linings.
 
We still covet your prayers. It is so hard to watch our little girl have seizure after seizure after seizure all day long. It's hard to see her drugged and frustrated and unhappy.
 
She's on three drugs right now and two of them are just completely messing her up. We were backing off one of them because she was raging, but had to stop backing off that one in order to back off the other one which makes her so drunk and drugged that at times she can hardly hold her head up. Think raging drunk and you have a good idea what she is like a good bit of the time! Raging drunks don't know how to make good decisions and have no sense of danger. Raging drunks need to be watched every single solitary moment. Raging drunks hate being told no!
 
It's a struggle for her and for us as we try to figure out how best to help her.
 
All the silver linings the Lord has given us in the last few weeks - they are our lifeline in the midst of hard.
 
The Lord is trustworthy in all He promises
and faithful in all He does.
The Lord upholds all who fall
and lifts up all who are bowed down.
 
 

 
 

12 comments:

  1. While I know this season is hard, I am happy you are finding the silver linings to focus on as they are so important to keep you going. I have to say, you can see she looks much healthier, so be encouraged. controlling seizure activity is a long and sometimes constant battle, I am still hoping and praying that something that significantly improves her quality of life is found, although its such a long journey of building up and tapering off and isolating this and isolating that, and what's hurting and whats helping. So very hard. Keep pressing forward!!

    Her face looks so much healthier now though... good love, good food, and a good environment ARE doing wonders for Little Sister so that, to me, is yet another silver lining. Her color looks better in these pics, the bags under her eyes are gone. She is LOVED!!

    I am glad you've got a home care aid, it's so very important. And remember caregivers need care too! Hope you're taking a bit of time for yourselves whenever you can, even if it's a half hour to quietly sip warm tea and listen to music while the house is quiet.

    Hugs xoxo

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  2. Oh Julia, Im so sorry for what she and you all are going through. We will pray,❤️
    Love,
    the Adamsons

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  3. CBD, I'm sure you're looking at it I hope it's a miracle drug for her.

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  4. Oh, Julia...

    Just such a bittersweet message. I am so glad to learn of the silver linings, and hope more sunshine will break through each day. Those extra hands must be extra-valuable for everyone - what a relief to get the help and encouragement they provide.

    But the meds' side-effects - oh, dear. Such a delicate balance to seek, but eventually it will come. Meanwhile, the bedtime hugs and other blossoming flowers of love and trust and attachment are indications that progress is real and far less tentative than before. Teeny tiny baby steps - but progress. That's something to celebrate, for everyone, Mary and you especially!

    Hugs all around,
    Susan in Kentucky

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  5. If eyes are windows to the soul there is certainly a softening in your little girl's eyes I can see merely from photographs. She does not have a haunted look. She feels safe. She feels loved. I just wanted you to know that even I a stranger see improvement just in pictures and her body language. God bless you Julia and Rob, little Mary and the boys. Prayers.

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  6. I'm so sorry for the hard times! So thankful for the silver linings. I pray things get better and easier-more silver, less hard. I admire your fortitude and faithfulness. I pray for God to uphold you and give you strength. And patience.

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  7. She looks so beautiful! Her skin is so clear. Prayers that a good mix of meds can be found for Mary. I also hope the genetic testing may provide a clue leading to healing of her seizures.

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  8. Sending you love and encouragement from Liverpool in England, I have followed your blog for a long time, and although the struggles are hard and real, as one of the other commenters said, the change in Mary is so evident in her photos, just wanted to say keep it up, you are doing wonderfully. A lot of people all over the world are inspired, encouraged and educated by you. Love and blessings to you all, Katie xx

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  9. Thank you for the update Julia! I've been checking the page to see how you have been doing. I'm glad you have some in-home care to help with her care. Take naps when you can to give yourself some time to recharge. Even with the in-home care, it would be good to give yourself some extra rest. I'm thinking of you regularly. And on a lighter note, it's so wonderful to see purple and other pastels in your photos! Isn't little girl clothes so joyful in color?!

    Sue H.

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  10. Praising God for the silver linings amongst the day to day survival mode. We understand the trenches. Pray you get the physical and spiritual rest you need apart from home/work.
    Love the pic of Aaron's beaming face with Mary - he sure did not look like that a few months after coming to America. Romans 15:13

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Loving words from kind people make our hearts glad!

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