Finally, it's morning, well morning where it's time to get up and move. Lilli sits up (she makes her way into our bed nightly somehow), crack**, pop**, crack***. After at least ten cracks and pops from her fingers and back I said, "Wow I bet that felt good." She didn't respond to my comment, but said, "Ugh, everything hurts."
Oh sweet baby, "I know." ...sigh. My night was the same.
That's the story of our life. From the outside, the world sees one thing, yet from the inside...
From the outside judgements, scrutiny... I may as well be a specimen pinned down being dissected
I have been hush hush about Lilli and Reese and their Lyme journeys. I did not want the judgment to fall on them as well. To my unwanted surprise, it couldn't be avoided. I have had to adjust their schooling this year around their array of symptoms. I have tried to minimize their symptoms by making adjustments to their school days. At the beginning of the year, I had lunch with Lilli and she was in a severe state of belly cramping. She was crying and begging to be home schooled. I was balling my eyes to the ladies in the front as I explained our controversial situation. At first, compassion is easy. At first, we are coddled and told it will be okay. They told me how Fairfax County is the best place to be for this. At first, they held me in their arms as I cried for my hurting child. But...
Things wear on people involved (especially with an illness that lies in a shitpile of controversy).
You tell them from the beginning; you warn them with a firm voice. It just won't sink in. This will not end anytime soon. And if or when it does, there will be relapses. There is no cure. Shaking their head with eyes wide open, eager to be there for you. I'm again naive with excitement that we are going to have a smooth year.
At first it was Lilli; I had to go get her everyday around 1pm because she couldn't make it through the day. She was in the bathroom for 2 hours when she got home. Once we were well into her treatment, she progressed enough that she could make it through the day. Not too much longer after that, I noticed as school went on, Reese's lyme rage was out of control. **Scary** I don't say that lightly. She has pulled Lilli's hair out, left scratch marks on Lilli and me. And if any of you know Reese, she has the sweetest heart. If I put doterra's balance on her, she almost instantly retreats. Thank you Jesus for oils.
Still adjusting,
still searching for solutions.
The goal has always been to keep the kids in class, learning as much as possible, as comfortable as possible.
So, the doctor and I adjusted Reese's schedule. She comes in late on Wednesday mornings. She is able to sleep in and relax until noon. This has been a super helpful adjustment. However, this would be the adjustment that wears down the front desk. Let's just say that all three ladies don't look me in the eye anymore. Their body language is tense as I say hello in the most kind voice I can possibly make. It gets worst to the point that when I see the lady closest to the door beep me in, she practically rolls her eyes. I'm no newbie when it comes to judgement or being talked about behind my back. This disease is not only controversial, but it's ever changing and the progression is long term. And... THERE. IS. NO. CURE.
Things went down a few days ago when I went past all 4 ladies at the front and asked to speak to the principal (she's only been there a month or so). I tried to assure them by telling them I wanted to talk more about their health plans, but I still got looks of fear and irritability. She was wonderful! She took the next step for me by calling a screening for both girls to help accommodate their illness and help them continue education fully.
But...
When I left, the head nurse (who's never there) kind of reamed into me. I left there crying. She clearly doesn't like Reese coming in on Wednesday's late (mind you, I have a doctor's note). She said she was worried about her attendance and I asked her if she's close to being a concern, and she says no. I'm confused and hurt. I told her how her teacher said she was doing great. Her response, once again hurtful, she says, "Every kid does well in kindergarten". I asked my mother and the principal and they told me that was not true.
Today, I left a second meeting with the principal and I feel so good about it! We are considering a 504 for both girls to help them with belly aches, fatigue, lyme rage (Reese), PE issues, etc. There will be 10 people in the meeting including Matt and I in that number. I'm so happy with this new principal and how she is really helping my family. I could tell she knew the truth about lyme :)
God may not answer quickly, but he does. He always hears you. This new principal is a huge blessing from the Lord. I know that the past principal was judging us as well, because the nurse mentioned them both chatting about us.
Luke 6:27-28
“But I say to you who hear, Love your enemies, do good to those who hate you, bless those who curse you, pray for those who abuse you.
I will continue to say hello to all of the front ladies and I will continue to pray for them. I gave them each a gift for Christmas, and I plan to do this at the end of the year as well. The Lord wants all to be saved, and my battle is not against them or the nurse. It's hard to take on this attitude and I was convicted by the Holy Spirit. The only way to hold to this approach is by listening to the guidance of the Counselor, the Holy Spirit. For those going through this as well, I pray that you will do the same. Everyone needs Jesus; I can't imagine going through any of this without Him. He gives me peace even when I don't understand. He gives me peace when I'm near death. He gives me peace when I watch my daughters suffer.
The Prince of peace is my best friend.
Oh sweet baby, "I know." ...sigh. My night was the same.
That's the story of our life. From the outside, the world sees one thing, yet from the inside...
From the outside judgements, scrutiny... I may as well be a specimen pinned down being dissected
I have been hush hush about Lilli and Reese and their Lyme journeys. I did not want the judgment to fall on them as well. To my unwanted surprise, it couldn't be avoided. I have had to adjust their schooling this year around their array of symptoms. I have tried to minimize their symptoms by making adjustments to their school days. At the beginning of the year, I had lunch with Lilli and she was in a severe state of belly cramping. She was crying and begging to be home schooled. I was balling my eyes to the ladies in the front as I explained our controversial situation. At first, compassion is easy. At first, we are coddled and told it will be okay. They told me how Fairfax County is the best place to be for this. At first, they held me in their arms as I cried for my hurting child. But...
Things wear on people involved (especially with an illness that lies in a shitpile of controversy).
You tell them from the beginning; you warn them with a firm voice. It just won't sink in. This will not end anytime soon. And if or when it does, there will be relapses. There is no cure. Shaking their head with eyes wide open, eager to be there for you. I'm again naive with excitement that we are going to have a smooth year.
At first it was Lilli; I had to go get her everyday around 1pm because she couldn't make it through the day. She was in the bathroom for 2 hours when she got home. Once we were well into her treatment, she progressed enough that she could make it through the day. Not too much longer after that, I noticed as school went on, Reese's lyme rage was out of control. **Scary** I don't say that lightly. She has pulled Lilli's hair out, left scratch marks on Lilli and me. And if any of you know Reese, she has the sweetest heart. If I put doterra's balance on her, she almost instantly retreats. Thank you Jesus for oils.
Still adjusting,
still searching for solutions.
The goal has always been to keep the kids in class, learning as much as possible, as comfortable as possible.
So, the doctor and I adjusted Reese's schedule. She comes in late on Wednesday mornings. She is able to sleep in and relax until noon. This has been a super helpful adjustment. However, this would be the adjustment that wears down the front desk. Let's just say that all three ladies don't look me in the eye anymore. Their body language is tense as I say hello in the most kind voice I can possibly make. It gets worst to the point that when I see the lady closest to the door beep me in, she practically rolls her eyes. I'm no newbie when it comes to judgement or being talked about behind my back. This disease is not only controversial, but it's ever changing and the progression is long term. And... THERE. IS. NO. CURE.
Things went down a few days ago when I went past all 4 ladies at the front and asked to speak to the principal (she's only been there a month or so). I tried to assure them by telling them I wanted to talk more about their health plans, but I still got looks of fear and irritability. She was wonderful! She took the next step for me by calling a screening for both girls to help accommodate their illness and help them continue education fully.
But...
When I left, the head nurse (who's never there) kind of reamed into me. I left there crying. She clearly doesn't like Reese coming in on Wednesday's late (mind you, I have a doctor's note). She said she was worried about her attendance and I asked her if she's close to being a concern, and she says no. I'm confused and hurt. I told her how her teacher said she was doing great. Her response, once again hurtful, she says, "Every kid does well in kindergarten". I asked my mother and the principal and they told me that was not true.
Today, I left a second meeting with the principal and I feel so good about it! We are considering a 504 for both girls to help them with belly aches, fatigue, lyme rage (Reese), PE issues, etc. There will be 10 people in the meeting including Matt and I in that number. I'm so happy with this new principal and how she is really helping my family. I could tell she knew the truth about lyme :)
God may not answer quickly, but he does. He always hears you. This new principal is a huge blessing from the Lord. I know that the past principal was judging us as well, because the nurse mentioned them both chatting about us.
Luke 6:27-28
“But I say to you who hear, Love your enemies, do good to those who hate you, bless those who curse you, pray for those who abuse you.
I will continue to say hello to all of the front ladies and I will continue to pray for them. I gave them each a gift for Christmas, and I plan to do this at the end of the year as well. The Lord wants all to be saved, and my battle is not against them or the nurse. It's hard to take on this attitude and I was convicted by the Holy Spirit. The only way to hold to this approach is by listening to the guidance of the Counselor, the Holy Spirit. For those going through this as well, I pray that you will do the same. Everyone needs Jesus; I can't imagine going through any of this without Him. He gives me peace even when I don't understand. He gives me peace when I'm near death. He gives me peace when I watch my daughters suffer.
The Prince of peace is my best friend.
