If I could, I would; Unfortunately I can’t

Last couple of months have really been tough for me. I actually had not realised the toll on my person until I sat down a few days ago and did some stock taking. Realised that I had not had one good night of sleep in months! My back is aching, I have on and off headaches and I am generally just tired.

So let me fill you in on the back story.

One of mine has eczema. When she landed on the blue planet, she had a mild form of it. She had some rashes and her head had some sort of scales, for lack of a better word, that were yellow in colour. In her first month, we got her head shaved so that we could wash her scalp and apply some of the prescribed oils. At the time we used oils and lotions from the government bee place near Lenana. They worked perfect! Some for her scalp some for her body.

Then after a couple of months these bee wax oils and lotions stopped working and we moved to other oils. We dabbled in shea butter, tried some coconut oil, went into jelly’s. Anything that was working we used until it stopped working.

Just before she hit one year, things became worse. And I realised we now needed medical intervention. So I went online to the Kenyan mum facebook groups and asked for referrals. Ended up at Kenyatta National Hospital to see a Dermatologist. At the time the child had developed full blown rashes on the body and some strange threesome boils on each side of her tummy. Child was in anguish! Doc looks at the child and he tells me, your child has Atopic Eczema. First time I got a diagnosis. Ofcourse I went to doctor Google as soon as I got home. But bottom line, what I understood from the doc and doc Google was that Atopic Eczema really has no external triggers per say but is from within. Now what is that supposed to mean.

Anyhu, visit to this doc got us some mixture of cream that worked wonders. We also got more creams for her face and the weird boils. For some months, this worked. As soon as the main cream was over, we’d get a prescription and go get more.

Then we hit the stretch we are onto right now, five months ago!

Child developed another weird boil, this time on her breast nipple. She was 19months at the time. So this boil would happen, turn red, burst, turn into a greyish scale and crack all in a matter of hours. The pain! The crying! The scratching! The Bleeding! As this breast phenomenal is happening, rest of the body is also continuing in rashes and scaling.

At first we got a diagnosis of fungal infection. Got treatment for that. Worked for a week and the cycle repeated itself. Did round two of same treatment. Worked and the thing came back again. At this time, we are ofcourse not having any peace. Said child wants to be in minimal clothing. Said child is crying most of the time. Said child is not sleeping well at night. Said child is scratching and is now full of marks on her tiny thighs and legs.

We were referred to a Paediatric Dermatologist. At this point I am unravelling. Doctor Google says blah blah blah cancer. I am scared. I am looking at said child and my heart is breaking. Child’s father’s family has experienced cancer. My family we have experienced eczema in different forms, shapes and sizes. Those two realities combined was not doing well to my fragile heart. Went to doctor. She squashed my fears and gave the diagnosis of Breast Eczema with a disclaimer – she is too young to have breast eczema. Sasa hio ndio kuambiwa aje? The treatment given worked – on the nipple thing. But since then rest of the body has been in chaos!

I have taken this child to clinic every so often. Last visit I bust into the doctors office, tired and exhausted after another sleepless night and exclaimed:

I am tired of coming to your clinic!

Doc looked at me and asked: “Hata salamu huna?”
I just slumped into the chair and told her I was tired. I was so so so tired!

It has been a whirlwind almost two years with this child. She is a miracle. Her life is a testimony of God’s power and kindness.

I am not complaining. I am talking. I am speaking.

As I have been sharing my tiredness and eczema experiences with her I have encountered quite the responses. I will classify them into 3 groups:

1. The Trivializers

These ones do not even wait for me to finish speaking. They shush me and remind me how ungrateful I am being by ‘complaining’. They are quick to remind me my past, when I was called barren, and how I should quietly endure this stretch. These are the ones who paint me as an ingrate!
The one’s whose tongues easily roll with worse off eczema stories they have heard and even parents who have it worse caring for children with other ‘worse’ conditions. May God keep me away from such tongues, even more so may He keep me from being such a tongue.

2. The Listeners

They listen. But they have no idea what it is I am talking about. I thank God for the listeners, they share the burden of life through their ears. Most in there group also double up as my prayer peeps.

3. The Tribe

These are my people. They know the pain of seeing a loved one suffer and they is absolutely nothing you can do about it. Worse still when a child is in pain, screaming, crying, unable to sleep. And what is it with dis-eases and the night? What dark coalition does darkness have with pain and discomfort?

This is my Village! One of them has made a weekly commitment to fast and pray for this child’s healing. There is also others going through their own caregiver challenges. Whose loved ones are unwell and there is nothing they can do for them apart from prayer and follow doctors guidelines. My heart breaks for them as well. I feel their tiredness and exhaustion, I know it only too well.

 

If I could take the place of my child through this eczema journey, I would; Unfortunately I can’t

So for now I join her in the best way I know how – following doctors orders, staying awake, holding her and praying her through it all.

But I choose not to stop there. I am reading and researching on Atopic Eczema. I am asking a lot of questions:

1. What causes the red inflamed patches on her torso and back of her knees and arms?
2. What causes the rashes and ashy-grey scales on her body?
3. Why does she scratch so much?
4. Is it an itch or a burning sensation?
5. If it is an itch, what causes it?
6. If it is a burning sensation what causes it?

Hopefully from these and many more follow up questions  I will get answers that will lead to a solution for my child’s current cause of great distress. You know necessity is the mother of invention. Who knows, maybe the world has been waiting for me to discover a cure for Atopic Eczema.

Until then:

Aluta Continua!