I'm frightened now. Very frightened.
And grieving so much that sometimes it hurts to take a deep breath. Beth had short-lived low-grade fever Tuesday and Wednesday, indicating the second most serious sub-type of Juvenile Rheumatoid Arthritis, called the polyarticular type, which affects many joints and can lead to severe arthritis that persists into adulthood for some people. It requires aggressive drugs and in some cases many different physical therapy devices to help people gain self-sufficiency (due to the impairment of small joints involved).
Six weeks ago, I had a normal, lively child. Now I look at her and see a regressed toddler who wants to nurse several times an hour and cries when I'm out of her sight....even for fifteen minutes in the shower.
I'm a caregiver by nature and I've always loved caring for sick children. It's only a burden when I'm also sick and weak. So Beth needing me more now isn't a problem for me, which I guess is a grace in all this?
This disease is cruel and variable. Some days she can't walk at all until late afternoon, and on other days she can walk and dance within a few hours of waking, but then a few hours later she'll no longer stand up. Every day is different.
Yes, she still laughs at times. She's still silly and lovable and a huge, indescribable blessing. But she has moments, perhaps those of greatest pain and grief, in which she just wants to nurse and nurse and be wholly comforted. It's such a blessing that through nursing I can provide something for her soul that comes straight from the heart of God. Nursing was His idea and I'm praising Him anew for the gift. This kind of comfort exists in no other form on earth, save for maybe a filling of the Holy Spirit. And years spent long with a faithful husband?
One of the reasons I never weaned her is because I always wondered....what if my sweet girl gets cancer and needs to nurse through the horrible pain? If she had bone cancer, I believe it would have shown up on the x-rays, so I've all but ruled that out. Lupus is possible, but rare in someone so young. I don't suspect Lyme Disease--which can cause arthritis--because there was never a bulls-eye rash. There are two aunts and two cousins on my mother's side with auto-immune diseases (lupus and MS). Juvenile rheumatoid arthritis (JRA) is also an auto-immune disease.
I read that parental grief is always there, in one form or another, with this disease. Sometimes relief comes with remission, but then fresh raw grief arrives with the flares. Some kids have continuous trouble for years and never experience remission.....a prospect I can't imagine. The emotional stamina would only come by miracle.
I'm working on developing the mental framework for a new normal. But not knowing how bad it will get makes that extremely difficult. I won't know for possibly another five months if she has the very destructive type (systemic), the semi-destructive type (polyarticular), or the most common and less serious type (oligoarticular).
I know the core of my problem right now.
I want to believe she's mine.
But our children are never ours. They're His and He writes their story.
We don't know how long they'll live, how well they'll live, or how much pain they'll endure. We can only cling to the notion that the journey and the outcome are for His purposes......Holy and mysterious.
We must daily give our children to Him as an offering, as Abraham did with Isaac.
Genesis 22:9
When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood.
James 2:21-22
Was not our ancestor Abraham considered righteous for what he did when he offered his son Isaac on the altar? You see that his faith and his actions were working together, and his faith was made complete by what he did.
And grieving so much that sometimes it hurts to take a deep breath. Beth had short-lived low-grade fever Tuesday and Wednesday, indicating the second most serious sub-type of Juvenile Rheumatoid Arthritis, called the polyarticular type, which affects many joints and can lead to severe arthritis that persists into adulthood for some people. It requires aggressive drugs and in some cases many different physical therapy devices to help people gain self-sufficiency (due to the impairment of small joints involved).
Six weeks ago, I had a normal, lively child. Now I look at her and see a regressed toddler who wants to nurse several times an hour and cries when I'm out of her sight....even for fifteen minutes in the shower.
I'm a caregiver by nature and I've always loved caring for sick children. It's only a burden when I'm also sick and weak. So Beth needing me more now isn't a problem for me, which I guess is a grace in all this?
This disease is cruel and variable. Some days she can't walk at all until late afternoon, and on other days she can walk and dance within a few hours of waking, but then a few hours later she'll no longer stand up. Every day is different.
Yes, she still laughs at times. She's still silly and lovable and a huge, indescribable blessing. But she has moments, perhaps those of greatest pain and grief, in which she just wants to nurse and nurse and be wholly comforted. It's such a blessing that through nursing I can provide something for her soul that comes straight from the heart of God. Nursing was His idea and I'm praising Him anew for the gift. This kind of comfort exists in no other form on earth, save for maybe a filling of the Holy Spirit. And years spent long with a faithful husband?
One of the reasons I never weaned her is because I always wondered....what if my sweet girl gets cancer and needs to nurse through the horrible pain? If she had bone cancer, I believe it would have shown up on the x-rays, so I've all but ruled that out. Lupus is possible, but rare in someone so young. I don't suspect Lyme Disease--which can cause arthritis--because there was never a bulls-eye rash. There are two aunts and two cousins on my mother's side with auto-immune diseases (lupus and MS). Juvenile rheumatoid arthritis (JRA) is also an auto-immune disease.
I read that parental grief is always there, in one form or another, with this disease. Sometimes relief comes with remission, but then fresh raw grief arrives with the flares. Some kids have continuous trouble for years and never experience remission.....a prospect I can't imagine. The emotional stamina would only come by miracle.
I'm working on developing the mental framework for a new normal. But not knowing how bad it will get makes that extremely difficult. I won't know for possibly another five months if she has the very destructive type (systemic), the semi-destructive type (polyarticular), or the most common and less serious type (oligoarticular).
I know the core of my problem right now.
I want to believe she's mine.
But our children are never ours. They're His and He writes their story.
We don't know how long they'll live, how well they'll live, or how much pain they'll endure. We can only cling to the notion that the journey and the outcome are for His purposes......Holy and mysterious.
We must daily give our children to Him as an offering, as Abraham did with Isaac.
Genesis 22:9
When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood.
James 2:21-22
Was not our ancestor Abraham considered righteous for what he did when he offered his son Isaac on the altar? You see that his faith and his actions were working together, and his faith was made complete by what he did.
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