Wednesday, February 11, 2015
God With Us
Hey there friends! We have been plugging along trying to take one day at a time.
Milla has had some pretty good days over the last month (some decrease in seizures and increase in some of her strength) but we are seeing less and less of those days. She’s had 3 med changes and I think that has helped her but the last few days she has been noticeably weaker and has had more seizures. We are seeing some seizure-types that we haven’t seen in 9 months or so. And all of her seizures are longer. She is coughing and choking more with her liquids and on her saliva and her cough is weak and ineffective. The ups and downs are exhausting along with the physical exhaustions of each day. Milla is out-of-it much of the time, but she is also still very aware of her world and knows who everyone is and is still very affectionate and quick to laugh. And she loves to make other people laugh as well! We are so thankful for her spirit!
Little Elle-belle has been living up to her reputation as a pistol. We are unsure at this time if we are just seeing a strong-willed 2 year old or if we are seeing neurologic changes. I also feel that her speech has, yet again, declined sharply. Lately, I have understood very little of what she is saying. She had a phase like this with her agitation and speech decline back in the fall and then broke out of it for awhile - another up-and-down that is emotional exhausting. But despite these issues, she remains strong and active and relatively seizure-free. And she remains our little prayer warrior - both she and Milla want to pray all through the day and about 30 times during each meal. Elle is always reminding us how many things there are to be thankful for, as she doesn’t just thank God for everyone’s food and all the people sitting around the table, but she thanks God for things like the lights and the ceiling and the chairs and her fork and her shirt. How blessed we are to have a house to shield us from the cold and the rain, a place to eat our food, plenty of clothes for our bodies, a soft place to lay our heads at night. Yes, so many things to be thankful for.
And our sweet and boisterous Ann Carlyle - whose heart is getting bigger by the day. To witness her affection and care and gentleness towards Milla is straight up witnessing Jesus’ love. And she and Elle have a sweet little relationship as well - always running around the house chasing each other. Ann Carlyle never complains about helping them - only a little about Elle 'always copying her'. :) I love hearing her telling Milla that ‘Sissy is here’ or ‘do you want to push Sissy?’ (a game they play that makes Milla giggle) because she used to hate being called Sissy but now she wears that title proudly. A few mornings ago, Ann Carlyle had both arms tightly around Milla as they were side-by-side watching TV - and with her voice full of sisterly pride and protection, she told me not to worry because she was holding Milla and that she wasn’t going to let her fall. It’s these little moments that I treasure so much and store away in my heart.
Frazer and I are clinging to Jesus and each other as we move through each day. Our hearts have been so very heavy. We long to ‘fix’ this and we are utterly helpless to do so. We thought we had learned what daily manna meant but we continue to find, in our helplessness, how much we need Jesus and how much we have to rely on Him to carry us through each hour, each day. He gives us new strength and sustenance every morning. It is indeed supernatural as we feel completely overwhelmed and weary much of the time these days.
Please pray for wisdom and the wherewithal for us to process all the crazy in our lives and to make decisions and just to do life.
Please continue to pray for strength for our marriage. This level of exhaustion and grief can be a minefield for relationships but we are praying and trusting Jesus and doing the work we need to do to process through the grief and to keep our little family together. I’ve learned over the years that the times that we most want to turn inward and feel too ‘done' to be kind and gentle are the times that we most need to look outward and make offerings of kindness and gentleness. Frazer and I remain best friends but we know the devil lies in wait and would love nothing more than to tear us apart.
Please continue to pray for all 3 girls - my heart’s desire is for God to show them all mercy. Mercy for Milla and Elle as they suffer through this disease and mercy for Ann Carlyle as she has to process and grieve through much too much. And pray for their relationships with each other…that, although they are so young and time is so short, God would cultivate a deep love between all of them and that Ann Carlyle would have many memories of the time she had with her sisters.
Please pray for sleep. Sleep has been a wee bit better. Well, kind of…sometimes. We all could use a little more of it. And a special thank you again to all you early birds (angels) that come and sacrifice YOUR sleep and help us get a little extra of it. This thing you do is so amazing and helpful to us…it is part of our manna every morning that God is providing.
Please pray for us as we will be starting hospice within the week…and pray that her hospice team will be full of compassion and be a wonderful resource for our family.
And a big request this week - Milla will be having surgery Friday morning to have a tube placed that goes directly to her stomach so that she can continue getting her meds. She will be staying overnight at LeBonheur and might have to stay longer depending on how she does post-op. Her doctors feel that doing this surgery now is important so that she will be strong enough to come off the ventilator without difficulty. Please pray for this specifically - that she will have no pulmonary issues and that there will be no complications of any kind. And pray that the other 2 girls will do well during the hospital stay.
Please pray for everyone’s health! Milla and Elle amazingly have stayed healthy despite a sinus infection and fever virus that have made their way into our house. Especially this week, we need our health…we don’t want to have to postpone Milla’s surgery. And not only that, but a bad cold or other infection could have serious implications for Milla as her disease progresses.
And some very happy news and something to please be in prayer for…my sister is moving to Memphis! She and her husband have 3 kiddos - Jack is about to turn 15, Colson will be 11 this summer and Lucy is 7. The cousins adore each other so much and to have Dawn and Jeff here to help and live life with us will be just AMAZING. They will be listing their house in Birmingham in March and Lord-willing will be able to move here in the summer. So please pray that they will sell their house easily and that they will find a great house close to us easily and that all the timing will work out well. God has already shown them multiple times that He is going before them and is paving the way. I know He will bless this thing they are doing as they follow His lead to sacrifice (even though they don’t call it that) - uprooting their family to come here to be His love to us.
As I was starting this email trying to think of what to say to you, I kept hearing/thinking, Emmanuel - God with us, over and over again. I was encouraged last week to remember the literal presence of Jesus with me as I struggle through my day…as I watch my children struggle…as I so often fearfully consider what our future holds. I long for Him to come back soon. But for reasons I have no business trying to understand, He has us here and has chosen my family to walk this hard road, fraught with danger at every turn. So we will choose to say, not your will, but Thine. Blessed be the name of the Lord!
Much love and thankfulness for all you do!