Wednesday, August 24, 2011

Dear Delaney . . .

Sweet Delaney Jayne,

You began fourth grade today. You woke up before your alarm and were excited and anxious all at once. You wore the cutest jeans with a shirt that had a bunch of dog breeds on it. You wore bright pink ballet flats and a matching scarf with a floral pattern. You pick out all your clothes now and already have a particular sense of style at eight years old. You don't like to eat breakfast early, but you nibbled on some cinnamon toast and sipped some milk. My cousin Hannah is living here and doing her student teaching. She gave you a ride to and from school.

This is your fifth year at LCCS. Somehow God has always provided for you to be there. I am particularly grateful for this because so many of our days these last years have been just plain hard, and I have always felt some rest knowing there is an entire community of people loving you and praying for you. Of course having grandma there every day is a special gift.

You began kindergarten in 2007 when you were four years old. I was in the hospital in Maryland fighting for Danica's life, and it almost killed me to have you so far away doing something so important without me. Since then it seems we have had constant trial. You have kept a brave face, but I know your heart has been wounded so many times. I see it more now than ever. I know you are loving parts about living here and grandma and grandpa's, but you are also ashamed and dream about having our own home again. I know you have had trouble really connecting with girls in your class since Lauren left two years ago. She is your kindred. I know you wish I could have volunteered in class or just been more present in general. You wish I could plan more play dates or take you to more activities. You've sacrificed things that are clearly your passion, like horse riding lessons and summer vacations to the beach. You scream when you hear the words, "medical bills." You are painfully aware of our financial situation. This makes you anxious. I am so sorry I couldn't have given you more and protected you more.

It's been hard for you to watch your baby sister go through all she has. I know you wonder how life would have gone if she hadn't been born. That's okay. I know you are very angry about how sick I have been. I see your heart and understand you love me but, much like your dad, you are afraid to get too close to this kind of suffering, and you wonder if it will ever really end.

Delaney, I'm sorry. I ache to give you the normal ebb and flow of life. I am so sorry I can't get out of bed so many mornings and you always have to find me lying down. I long to be the fun and energetic mom you want. I wish I wasn't always so tired and on edge and just plain grumpy. I have felt like we are all on autopilot for so long just to get through. So many important things I want to do with you I have not. So many things I've said I wish I could take back. So many things I wished I had said, but I never did.

At the end of every day I crawl into bed with you. We read or watch old episodes of Andy Griffith or the Waltons. We pray and then snuggle and chat while "Sleep Sound in Jesus" plays. I see you cling to me, your mommy, no matter how many times we have tussled during the day. Tonight you looked right at me. I am so haggard and tired and broken. You asked, "Mom, Do you remember what you looked like before?" It hurts me, but I understand. Danica still looks at me the way you used to, like I'm the most beautiful woman in the world. I knew this would fade and you would begin to see my flaws on the inside and the out. I want you to know this is beauty too. This taking one painful step after another to care for you is love.

Jayner, I wanted this to be the year we could just breathe and be. It doesn't look like God has written that for us. Your dad is in pain with continued kidney stones and a blockage. He will have to have another surgery. You see my pain in my face. The next few months will mean more trips to doctors, more upheaval, more bills. It will be more of being stuck and not moving forward. I pray God will protect you. I pray He will keep your heart tender and let no root of bitterness grow there. I pray He will help you to understand how much I love you and how much He loves you too.

Don't ever stop believing in life and love and the possibilities.

Sweet Dreams. Mom

Wednesday, August 17, 2011

Candle in the dark

Reading Amy Carmichael tonight.

" . . . Your prayer for perfect healing went to my heart. God knows how I long to be well and able to do more. But yesterday as I read Psalm 84:11, `No good thing will He withhold from them that live a godly life', I wondered if He would not rather the emphasis were laid on this: `Draw us so into accord with Thyself that no good thing shall be withheld', instead of: `Health is a good thing. Lord, give it.'

More than three times I have prayed Paul's prayer, but so far always the answer has been the one that came to him: `My grace is sufficient for thee' (2 Corinthians 12:9).

Any day that might change. What is any illness to Him? One touch and it would be gone. But I wonder if the Lord is saying not only to me but also to you, `See to it that you are in perfect accord with Me and then trust Me to withhold no good thing.'

If health be that good thing, oh, how joyful it will be! Every morning I waken with the hope, `Perhaps today'. But I want first to want His will, be that will mine or not. It is there that prayer can help most.

You don't need words to tell you how I am feeling about this weary pain. It seems sometimes that there is no way to God's best but through pain, and yet how earnestly one longs to save a dear one from it.

Don't be disappointed about not being fit for work just yet. `Let patience have her perfect work' has been one of the words set to me to learn by heart. I never found patience easy, being by nature a most impatient mortal; even one week in bed seemed impossible in old days. Well, I only tell you so to help you to know that I understand the ache to be well and up and out. And He understands far better than I do. I often think of those hours on the cross---helpless hours. He understands.

And the depression that follows pain He understands too. `My soul cleaveth to the dust': no truer words were ever written. Sometimes just to know one is understood helps. . ."

"CHRIST suffered in the flesh.
If those who follow Him in obedience now
are called to suffer (as they will be),
they can conquer if they arm themselves
with the same mind' (1 Peter 4:1)

He looked on to the glory which should follow.
So they."

Looking on to glory through my tears.

Sunday, August 14, 2011

Be still

"He says, “Be still, and know that I am God." Psalm 46:10

I'm home alone. I skipped church to be here alone. Dan took the girls to Sunday school so I could have a few hours to just be still. Living here in my parent's lower level has been a blessing but a challenge for me. There is always some kind of activity above. I have not relaxed here. I rarely read. I haven't sipped any hot tea or found a place to nestle in with thoughts and prayers and words. From early morning until late at night there are thumps and bumps and voices and a strange pull of frenetic energy that is inevitable from three families living under one roof. The girls are always wanting to go upstairs or outside and see what everyone else is up to. This week my cousin, Hannah, will also be moving here to live in my dad's study. She is coming to student teach at Lake Center and will be in Delaney's class some of the time. Delaney is thrilled. All I can think is there is no more room at the Roberts' inn. Having this place to land when we would literally be in a shelter somewhere otherwise is top of our gratitude list. To even complain for a minute about how difficult this is sometimes seems so wrong. I know God has us here for a reason. I just need some time to be quiet and search out the treasures hidden here.

I have not been well. I am not well. This suffering has made even the basic tasks of caring for my family very difficult. When people ask me how I am feeling I want to be honest, but I cannot continually launch into my symptoms and how every step these days is a fight. I know they must rolling their eyes. I mean how in the world can one family endure so much continuous trial? I don't blame them for needing to look away. The faithful (you know who you are) who have stayed and stayed and stayed are perhaps the greatest gift we have received. After the journey we have traveled for years now I am least equipped to finally face the physical pain that has ruled my life for well over a decade. I am riddled with guilt that my dear Dan and Delaney and Danica would have to go through another season of hurt to perhaps find myself healing. I do not know where the money will come from this time to travel to see the specialist and get all the imaging done and make a good treatment decision. Just like when we began the hunt for Danica's diagnoses and treatment over two years ago, I am stepping out on faith. I'm believing God will not take us where He cannot provide for us and keep us. He's in this.

This is what I know for sure. In the past few weeks God has been leading me in specific ways to understand I could find help. He has allowed my physical pain and disability to increase to a level I have never experienced before. Almost like He's shouting at me to find help. He has given me courage specifically through Danica to know healing is possible and any improvement in my pain and day to day life is worth fighting for. He's calming my heart about the new road I see stretching before me. He's provided for us through gift cards to help with school shopping and groceries and even an offer from someone to treat me with massage and fascia release free of charge. He's been faithful. He will continue to be faithful.

I need to be still and quiet and alone to reflect on how far God has brought us and rest in His promises and loving arms for this next chapter. Our hope remains!

(Today I finally was able to make my appointment with Dr. Fraser Henderson in Bethesda, MD. It is 8 weeks away. I will see him Wednesday, October 19th, have very specific imaging done on Thursday, the 20th, and then see him again on Friday the 21st. I will write later about my worsening symptoms and why this is the doctor I need to see. The Tuesday after, the 25th, at 8:30 in the morning we will need to be in Cincinnati and hope and pray Danica's scan will show complete fusion, and she will be able to begin some life without her collar. God's timing is perfect. Whatever He has written for my own healing had to wait until Danica could get to this point in her hers. Please pray I will be able to find some relief with massage and be able to function during the next two months. Please pray for Dan and I's marriage. All this is so hard and Dan admits he draws from my strength and energy. When I am this low he gets very discouraged. Dan is healing from his stones. He still has some pain on and off and sees his surgeon in two weeks to follow up and have another scan. Delaney is also struggling. She begins fourth grade next week. She is visibly angry with me for feeling so sick. Since she was four years old and had to move here to Ohio with my parents while I was hospitalized in Maryland she has had so much to understand and deal with. Every night she prays for health for her family and a "normal" life. Although blessed with much love she feels very insecure. Please pray Danica will continue to heal and progress in therapy. Her sweet spirit rescues me every day. Please pray for peace and little breaks of stillness to know God is God. Thank you.)