Enbrel, My Breast Lump and My Daughter’s Rib

Grace by any other name2 Comments

What I’ve read is true. Two days or so before your next injection, it wears off and you feel all the pain. I don’t even know when my next injection will be! It was meant to be today, and I was reminded of this sad fact by the deep ache I’ve woken up with.

So, I need to get better. And I also need to prove that I don’t have cancer as cancer patients aren’t allowed to be on biologics. Oh, I didn’t mention anything about cancer?

I’m one of those “Check your breasts!” fanatics. It saves lives. Early detection really is the best when possible. Even check just your skin for dimpling or ‘wrinkling’ or something different, even if inside you feel no change. That’s been my mantra for years and those who know me know that.

So, I was lying on my bed on Wednesday night and I decided to conduct a breast check. Went round my left breast first, all the way to armpit, and all felt normal. Went round to my right side and …”Hmm, what’s this?” It is very close to my breast bone (I know that’s not good) and it’s larger than two centimeters across. In a state of panicked, “I really hope I’m wrong, I really hope I’m not feeling something that’s not there,” I went out and asked my teenager, Eliora, if she could feel it. I did the same. Told her to start with the left and then the right. “Nooo!!! It’s not normal! I can feel something here!” I had a mammogram last year January and there were density changes and changes the radiographer thought and good were due to surgery but suggested I go back this year. Now, I’m not so sure they were purely from surgery but at the same time, I hope they were.

Husband arrived from business in Botswana that evening. I lay down, pressed each breast flat, and he couldn’t miss it. You can see ‘something’ raised on the lower side towards the bottom middle bottom of my breast.

I sent photos to my friend and she immediately saw the difference too. And we all know how notoriously bad photos are.

I have no clue what it is. Is it some weird muscle thing? Is it a cyst? Is it scar tissue from the two breast reductions I’ve had in my life? Is it a weird bony growth caused by AS? 🫣Is it a tumour? Is it necessarily malignant if it’s a tumour? Or will I escape for the fourth time with a growth that needs testing but will NOT be a malignant mass?

I do know how stressed a young girl was in university when she found a lump. Her boyfriend and I were visiting her room in res and she was frantic with worry. Hers was in the breast itself, she asked me to feel it and yep, it was there. She went to the varsity clinic and they told her to return two weeks later for a biopsy.

For two weeks I stressed and her boyfriend stressed and she stressed. It was horrible. I didn’t want her to suffer! And her boyfriend was shattered with worry while we waited. Thank God for her, it turned out to not be a malignant tumour. I think it was a cyst of some kind. The relief was beyond explanation. I felt like I could breathe properly again.

I will feel like that after my next mammogram and ultrasound. Maybe after biopsy if they deem it necessary. I did do an online booking at the hospital I did my last one at but they keep the “we will call you back with a date” thing as promised, so I will call. Or maybe I’ll see my gynae and do a full check THEN go? Or I’ll book the mammogram AND book my gynae and see which is available first. I think she’d wanted me to do mammogram every two years and pap every year. I’ll do both. But first, this bronchitis needs to be better so I don’t cough when they’re busy checking me.

Speaking of bronchitis. Someone not yet on oxygen in our ILD group got bronchitis which then turned to pneumonia and ended up in hospital on a ventilator and died scared me! I need to get better fully. And I need to be able to be still for the mammogram. So, here’s to speedy healing and to being able to breathe a sigh of relief. 🙏🏾

I won’t talk about the irony of how when we were choosing which of the two ‘most expensive biologic paying’ medical aid plans, I kept telling my husband that the most expensive one of the two had higher cancer coverage and allowed for treatment overseas so we should take it. After all, Ankylosing spondylitis patients have a higher cancer risk. So…Yes, I believe in natural as being best. But I will use it in conjunction with surgery. And once I know what kind of breast cancer it is, I WILL look for remedies from those who have used natural remedies who will have been at the stage I’ll be found to be at and we’re healed . If it’s cancer, I will remove the enemy lump. If necessary, I will remove the breast too and so reconstruction – as horrible as that itself is. And I think I’d need an implant (as safe as possible) as they can’t take a stomach muscle as mine are behind mesh. I know I can’t do all the natural remedies my slow leukemia friend is on. Broccoli etc that she uses for juicing are bad triggers for my IBS. So that’s the other thing. I can’t use things that will make me sick in this way. I do not need a bowel impaction- those are also dangerous.

But let’s not go there.

We will go for a mammogram and ultrasound and both will tell me that it’s so obviously a cyst or something that I won’t even need a biopsy. I don’t know how long off Enbrel I would need to be for biopsy. If urethral surgery was four weeks surely a biopsy will be some time too, if not as long. After all, there’s still risk of infection… Will find out when I know that I need it.

And I won’t! Right?💪🏾

Oh, and my daughter’s floating rib is still causing significant suffering. My husband has 75% off flight tickets and has been to parts of America for work maybe every years since 2013, so he is au fait with getting about. And doesn’t have AS pain to contend with with regards to flying. And he won’t need to wear a mask so he doesn’t catch sickness. He will take her to America if I can’t find a surgeon here who knows about floating rib syndrome.

Absolutely Fabulous?

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Am I starting to do absolutely fabulously? I’ve seen how many Enbrel (or any biologic) patients with AS don’t ever get full pain relief- ever even when it’s deemed to be helping. When the biologic is working, it means the pain has reduced and damage is slower. That’s all. And sometimes it’s not enough. Patients are “on treatment” but STILL can’t take walks because of pain, still can’t sit long, still can’t go for coffee with their friends. (Naming things real patients have mourned about.)

It’s hard.

But it’s also better.

I am on many painkillers including Tramadol. And I still have to go try the SI joint injections into both sides- when I’m better. So maybe there might yet be relief from those. Last time I thought there wasn’t any relief till it wore out and then I realised it had partly worked after all. It’s like being on a biologic. You can’t always tell because you’re still in pain.

I got distracted! But, it’s also better.

I sit here after two nights of no sleep. After a flare up that began on Monday but has totally disappeared!! It’s never gone away this fast. My last Enbrel injection was on Friday. I don’t know when I’ll be able to inject again thanks to this virus. I need this not only for my bones but for my lungs. It can help slow down the deterioration caused by AS.

Guys, I’m sorry I’m not as coherent as normal. I’m not feeling great at all. My chest is on fire and it feels like it’s crackling inside. But here’s my point.

Last night when I was on the phone with my husband (He’s always traveling) I told him that I thought I’d turned a corner regarding pain and that I think it’s the Enbrel. I had not had to take my Tramadol in the afternoon, in fact, I didn’t take any painkillers in the day time. I usually take three in the morning, sometimes one half way between morning and midday, another three after midday, and three in the evening. But when we spoke on the phone at around 7pm, I’d last had pain tablets in the morning. And I was going to only take the two lighter type of pain tablets- NOT the opioid.

In the night I kind of regretted not taking anything stronger, but the pain was bearable! And that was without the Trepiline I also take at night. I’d forgotten to take it and it makes me groggy if I take it late, unable to study my Bible before the children wake up. Which was ironic because I was so sick from this virus that I didn’t study my Bible anyway. But here’s the thing. I’ve only taken two pain tablets because of the ACHE I have. It’s not sharp. It’s not as if it’s bone grinding on bone like normal. It’s the level of pain I last had in my late 20s!! I feel weird! Like I’m floating! (That might be lack of oxygen talking, or my sinus infection but let’s not go there!)

I read memoirs by other sick people and so many family members and members of the public and church folk give money towards medical bills, travel costs etc and it’s lovely. But that doesn’t happen in Africa. I don’t go to the pharmacy each month and feel bitter about the costs. But reading those books does remind me of how different things are here. But more importantly, I HAVE received! Three people have given me money in the past year. I don’t know how to explain what this means. I don’t have anyone to come help me sweep or mop. So to have someone give money just randomly means the world to me and they will never be forgotten.

I may not have “all these people” giving but I know that those I give to right now, would give to me if they could. I know we love each other and feel terribly for each other. And I know they would come help me clean or put laundry away or cook. One even stayed away after wanting to specifically come and clean when she was sick because of how much she loves me. She gave me health, in a sense – a gift better than money- and at a time when we only knew of one bad lung function. It was in November. Maybe by then my lung diffusion capacity had already also decreased as found in January.

Each payment I make, I remember the money gift that came all the way from Kenya. Prayers do go far. Checking in makes me feel loved. But Enbrel costs money. And so today, I thank my faithful friend who regularly comments on my posts. She makes me feel heard when she does, it helps, knowing I’m not writing into air. And she sacrificed for me despite never having met me physically.

Today, I’m going to be real. Every kind of gift of love matters. But when I realised that though we increased our costs by going to a higher medical aid plan, we would ALSO need to pay R2000 per set of Enbrel injections, my heart sank. I looked at the pharmacist in despair. And she too was upset. Money counts. And knowing that someone gave gives me strength. I don’t despair for long because I remember the gifts. God will provide. He’s already provided sisters who love and check and ask and worry. And money.

That’s the reality. Prayer only goes so far. My feeling thankful despite sickness won’t pay the medical costs. And so, today I focus on money. Not the one I’m lacking. But the one I was given. When I pay, I breathe a prayer of thanks for Flydah, Abby’s mama, who didn’t let borders get in her way. And I pay pretending she’s right there with me.

Let’s see how long this reduced pain lasts. And let’s hope I get better quickly so I can keep injecting. Find someone near you who needs the same and give your time or your money. You know you’ll feel good and I know God will be feeling warmhearted over you when you do. You might be the one to help someone get over their despair.

Dead Serious

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I really really want to beg everyone who works with people as clients or patients to be very thoughtful. If you’re sick with something infectious, don’t go spreading it. Take sick leave or if you can’t, wear a mask and tell the person you’re working with or will be working on, that you’re not well so they can decide for themselves if they want to risk getting sick.

What this sweet lady told her relative is what I mailed to my son’s physiotherapist yesterday. We went on Friday, and during the session? I noticed that she was coughing and sniffing quite a bit. I even asked if she had allergies or sinus issues. It didn’t even occur to me that someone would work with clients while sick. She said no, she’s “at the tail end of a cold.” Ie. She was sick.

Instead of running out of there -don’t know how long we’d already spent in her when I asked- I thought to myself, “Oh well, that’s good that she isn’t feel too sick.”

I’m also dense. It’s not only her fault.

I should have run. But we finished the session.

And I brought her ‘cold’ to two daughters who got sick on Monday. and took it into my body. The children are not too bad but I’ve got a hectically sore throat and it keeps closing up. Like..sticking together so I can’t breathe at night. It was a bad night. And my nose is super runny and blocked. A cough has begun today. The very thing my pulmonologist warned against. An upper respiratory tract infection is a matter of life and death for someone in my situation. To treat people knowing you have one. And even if it doesn’t lead to death, it weakens the lungs further. I even told her during the appointment that I have interstitial lung disease with fibrosis when she asked about my restrictions. I’m frustrated. It’s such a stupid way to get sick. Getting it from someone who KNOWS they are sick but instead of giving patients the option to postpone, risks their patients’ health so they can make more money.

My people know how I’ve always complained and hated that- like the lady above- when I get sick, I get sicker than others. It’s scary, listening, knowing the next video after the one I posted. And it’s eerie, knowing she too felt that her calling was to be a help to others. Thats me. I feel I’m here to help others, to bear their burdens.

I had been feeling thankful. I survived Covid. I survived other infections which were so bad I was given inhalers and had chest X-rays for. But my lungs are worse today than last year and than previous years. It will be even harder to survive them and I plan on doing so. I ordered N95 masks to wear in winter in the store and church- if I go. And a pulse oximeter so I can check my blood oxygen at various times (You usually tend to need extra oxygen first at night and when walking/ busy. I do struggle at night but I want solid numbers before I go back to the pulmonologist. It’s not a big struggle.) Have sanitizer in the car. But I didn’t know the first source of infection would be the physiotherapist. I didn’t think to at least wear the disposable masks I wear to see my pulmonologist who also wears a mask.

And so, I ask you to please be more mindful of how your actions will impact others who are vulnerable. Nobody deserves to catch a cold or flu anyway. But for some, every single infection can cause death.

Just like what happened Billie ‘BJ’ Thomas, the lady above, who did HER best to stay safe, thought she was doing well with her lung disease, but was killed by Covid 19- as announced by her sister in the last video posted on her channel.

Your thoughtfulness can preserve a life. Think of it that way and do the right thing. All I needed was the option to attend when she’d fully recovered…That’s all.

Thank you for reading

Open Adoption Trials

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The trials aren’t in the open adoption itself. Birth mom never asks for anything. Well. She did once ask for money for DSTV but I don’t her we ourselves don’t have it. That was years ago. Then she asked for something this past weekend. In tears. But it’s not how you think.

People, I rejoiced so so much when I heard her daughter had passed Matric (Grade 12), First one to finish high school! Birth mom hadn’t managed to. Side note. I told birth mom that from the way she told me why she couldn’t focus in school and they kept telling her she’s naughty, and other things, I believed she has ADHD. She said she agrees. She said when I first told her my ADHD girl’s diagnosis, that she had googled ADHD and found herself saying, “But..this is ME!”🥹And so we have, an adult with untreated ADHD and clinical depression. The depression is being treated.

So, the news that birth sister was pregnant was disappointing. Extremely disappointing. So much for being happy she would enter university. Instead, the cycle was being perpetuated by her too. None more devastated than birth mom who has been telling her for years, to not do what she did. Telling her how difficult it is to raise a child with no income. (My goodness, it might be possible where there’s a good welfare system, but not here in Africa.) They had been sharing a bedroom and bed in their home. That is how deep the poverty is. (I have an acquaintance who will be trying to find them a bed if they move back home. Right now, they’re trying to share food with relatives housing them.)

Now here’s the thing. Birth mom’s recent partner and boyfriend wanted her to abort. She didn’t. He told her he wished she would die. He told her he hoped her HIV would engulf her body and kill her during her pregnancy, apparently weakened by being pregnant. (He’s evil and stupid.)

So we’d already been trying to kind of be a help. And now THIS. Another baby. No clear picture of what the boy’s parents are going to do about their grandchild except knowing they aren’t about to come any time soon.🥹

The trial is not in the open adoption. It’s in the heartache of seeing disaster befall a birth mom who had tried her hardest to at least stop her daughter from following in her footsteps. In their bed at night, she’d warn her, even telling her to only get a boyfriend after university. She wanted her to escape. But she hasn’t.

When we’d thought they’d be able to stand alone and move out the one small bedroom they’re in in a relative’s home, we’d offered to buy birth mom’s child a cot. But then, they can’t move. At least they can share food and get help with baby care in their relative’s house, though birth mom has to pay a baby when she goes to her part time waitressing job. So they’re stuck.

Last week, we did a video call when birth sister was admitted for an induction due to hypertension. My heart broke as her already stressed mom wept as she asked if it’s possible for us to still send the cot. She said they’d move some furniture out the bedroom, she’d sleep on the bed with the daughter’s baby and then her baby would sleep in the cot.

And so, I sent a cot, mattress and sheet which they collected yesterday. But remember, giving birth to my daughter is a secret. The relatives only know of teen daughter and current baby, not about my girl. So I asked her who she told her cousin (who has a car and went to collect the stuff) I was.

Constantia is one of those extremely affluent suburbs.🤣🤣Of course, I’d have just said that we are friends because white lies are still lies in my eyes. But I can’t foist my principles on others so…Constantia!? I wish I could afford a house for all eight of us in CONSTANTIA!😅

PSA: Psoriasis on Black Skin

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I knew it couldn’t be a birth mark. Aren’t you BORN with birth marks? This was sent last year after I saw a rheumatologist who believed it was something else. I believed HER so I sent this to my cousin telling her that I thought I might have found the correct diagnosis.

I really did try scrub it off many, many times. I even used various creams, like my steroid creams..nothing got rid of the patches. But I knew it wasn’t birthmarks. Why both ankles?

When my female rheumatologists (I can’t say all do this kind of exam because the first one didn’t) examined me, they both pounced on the patches and asked me what it was. I told them each that I had been confused too as they had appeared decades ago and I thought maybe I had not been washing properly🤣🤣 then realised it wasn’t dirt but nothing would get rid of them. They each immediately said “Psoriasis. And if it’s psoriasis, we will know when you start biologics as biologics can treat psoriasis.”

Treated? I’m going to put this on my YouTube as well. The days I spent online when I didn’t believe the dermatologist, searching for psoriasis and unable to find my type on Black skin, thereby convincing myself that it was not psoriasis…This one needs to be shared in case someone else has a case like mine. Not because psoriasis on its own is bad. But if she had diagnosed me with it, and then asked me if I have joint pain, we might have then at least diagnosed something like Ankylosing spondylitis which can come with psoriasis, or even psoriatic arthritis. We’d have been closer to the truth and I’d have seen a rheumatologist sooner.

It matters. Knowing what it is matters.

So yes, this is my Public Service Announcements. Psoriasis can look like this. Both ankles are clear. Been on and off biologics since July and fully on since January 25 this year.

Thank me later😉

Michael Jackson

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I am not saying anything about his alleged victims. I am not saying whether he was or was not a man stunted in childhood and wishing for what he didn’t have, but showing it the wrong way. I’m not saying whether he’s innocent or guilty. Only God knows…

What I know is that many of his songs were my life. What I know is that when my high school friend and I made up dances to his songs and I was told to take up dance professionally, I felt seen. I was not a no good.

One Voice Children’s Choir did a cover of this song so it popped up in my music app as a new release. Of course I listened. And it too brought me to tears just like the 1993 original has ever done.

From the beginning, from the day this song came out, my heart felt it. I don’t know who the writer is. But they were speaking my soul. I wanted to be loved, held. I loved the little one doing sign language. It was everything- y’all know I wanted to adopt since I was 10 years old. I wanted to imagine having a loving mother and brother. And this particular concert, where the ‘angel’ comes down?? It always made me bawl too. I wanted, yearned for someone to hold me. I mostly used to recover from surgery alone at home. Nothing as lonely as not being held when in extreme pain. I was reminded of this song last week because a young girl was asking her mom to stay home with her and the mom was loudly telling her that her family responsibility leave is over and she should be grateful that at least she took her to the doctor. There was no, “I’m sorry, I do want to take care of you.” That’s what killed me. It was like the poor child was asking for something she should not have been asking for- being a pest.

I was that little girl at the Clicks pharmacy. It hurts. Lonelienss while in the company of those who outsiders think is caring is a painful kind of loneliness.

The most heartrending lines are “But I’m only human” and “I get lonely sometimes…” Even in 1993 they broke my heart. I wished I could protect from his money grubbing parents. But I wished I could protect myself too.

I get lonely sometimes.

I’m not a super anything, I’m only human. And oh, I want to be held.

Thank you, One Voice Children’s Choir for reminding me of this song and making me go search for it. My God will come with ten thousands of His angels. Real angels. And they will hold me and every heartache will disappear. Every betrayal forgotten. Every wound healed. My body and my heart will be like His- perfect.

Until then, every now and then when I need to let out my emotions and cry, I will listen to this song. (Sorry to those who are offended by some of the dressing or dance moves. He wasn’t a holy roller SDA. But his songs touched this heart of mine.)

I’m Not Just a Hand

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Dear Nurse at Netcare Blaauwberg Hospital,

No, not you, very kind and talkative Nurse Malinga, the Zulu nurse who asked me where I’m from and apologised profusely for not being able to get the cannula in for my drip. Not you who was ignored by the Hand Nurse when you asked if it was time to handover so you could go home long after most night shift nurses had left. I mean you, Hand Nurse.

Just a few days before my hospital trip this past Friday morning I’d been singing the praises of nurses because of how wonderful the nurses at Intercare had been when my 17 year old daughter needed a drip. I regretted being so effusive when you didn’t make eye contact with your colleague nor animate anything she said.. and not with me, your patient. I felt so embarrassed for her. Why didn’t you say anything as she handed over, giving you all my information and asking if she may be dismissed?

You just came in, looked for a vein on the side of my hand and got that needle in. No greeting, evens guard had ambled over to me when I parked, coming from far away to ask if I needed a wheelchair yet no greeting from you. No mention of how you wish you didn’t need to use my arm, no words at all. You just took my hand like it’s a piece of furniture and did what you had to do.

You did everything you had to do. Without ever looking at me. You didn’t even look at me when you brought me the extra blanket when I was oh so cold and miserable. I was so shocked that I was unable to ask you to change the position of the bed. I was miserable. So miserable that the only thing that kept the final drip in my hand was the knowledge that I needed it and if I left, I’d be in trouble. I wanted to die. That was the only the second time I’ve ever spent time in a hospital wanting to die, and the first time, the nurses were wonderful. They smiled, asked how to make me comfortable…

I offered you-mentally, because we never spoke-grace. Perhaps you felt ill but needed to come in and see how the illness progressed because you needed the money. You did keep coughing after all, making new feet I’d leave the hospital with a killer respiratory infection. Perhaps your cat was sick. I made up reasons why you didn’t see me, you saw my hand.

I hope today you don’t have any reason not to see the patient lying in the bed in misery. All alone.

Sincerely,

The patient who still thanked you anyway for caring for her even though she didn’t feel cared for, just treated as a duty.

I Don’t Know

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It was just before evening worship. My eldest daughter was sick and would be sick the following day too (today.) Yesterday as we tried to take care of everyone, my son asked, “How will you survive if I leave?? There’s too much to do! They are too much for you on your own!”

I don’t know. I don’t have (with regards to maturity) an eight and nine year old. They are all four years olds, or even three years old given my not very talkative four year old is intellectually impaired. And in fact, my very talkative four year old is already a bit wiser than the eight and nine year old. If the nine year old is watching one twin, it doesn’t mean that twin is safe. You have to make sure there sure suit eyes everywhere. After all, my nine year old and eight test old still do dangerous things.

Another reason they’re not at a helpful age. Leg me start from the beginning. My Micaiah, (eight years old) threw up on Sunday evening. He then had diarrhea but not often. My eldest daughter got sick yesterday. Nausea, vomiting, fever, abdominal pain. If she tried to sip, she’d vomit. The night brought no relief so I took her to the doctor.

Time for IV. He suspects coronavirus, influenza A or.. something. She’s still down and very out.

So this led to my not very talkative twin vomiting at home! Started this morning! I dumped one child at the medical centre after they started the drip, asked the paed for a script of Zofer (Zofran) for my for year old which they emailed through. Collected the medication so my poor angel could finally lose the nausea and vomiting and be able to sip her drink and eat! And that vomiting was when I realised how different my children are. Both the eight year old and nine year old were terrified when their little sister threw up at the table! They ran away, grabbing their bowls. Scared! My poor Mickey was even whimpering in fear! It was left to my very talkative four year old to ask to help me and biggest brother wipe up the mess. ❤️

Truly, how will I survive on my own when I’m barely surviving as it is? My body is breaking down, today no amount of pain meds reduced the bone pain… I’m tired.

I don’t know. But I also didn’t know how I’d survive those terrible twin baby years yet I did. It will all come together-somehow.

Disaster Doctor Day but…

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So, my daughter has been spiraling. The Paed needed to see her as it really has been a long time and this wasn’t going to be a matter of increasing her dose of current meds as they’ve increased her appetite dramatically and half the screaming sessions are because we can’t let her eat multiple times when she’s just eaten.

This is the only time she was calm-when she was looking at trees painted in the reception area. Other than that, she was in so much distress that in the elevator going up, as woman had to end her call. She pulled me away from the door to enter the reception, pulling HARD. S dad even wished me good luck as he walked out after seeing me physically carrying her in.

I wished I could run out with her. But she needs help. It’s obvious her meds aren’t helping anymore. She was agitated and kept wanting to go during our doctor’s visit. This all by a child who has been there many times and was happily bouncing on the sofa and cried when it was time to leave, not wanting to. This was a new child. A terrified child. A child who scrabbled at the closed elevator doors as we went down, desperately wanting to get out. A hild who screamed in the hospital as we left, guaranteeing all eyes on us.

Next time I’ll ask if we can do video call. This was horrific.

But also, my girl calmed down as soon as she was able to touch bushes planted outside. Trees. Plants comfort her. Centre her. Give her peace. I didn’t realise how deep it was till I told her teen siblings and my 17 year old daughter told me that she sometimes will take a whole walk these days(She’s been refusing. Or stopping and returning when she used to be the one to pull them to go out🥹)if they tear down a small branch with leaves from our tree. THEN she’s happier off walking holding it.

Her favorite toy is a new one I bought that has fake carrots with lots of greenery. Now I see why she screamed for it at night. She never asks for anything but her teddy, usually. I need to somehow make use of this knowledge for her bedroom. To make it feel like her safe space. She wants to sleep holding jellyfish lamps and the water pours out no matter how tightly we close it, so that is a sensory no for her room. Hmmm

But I can’t leave on that sad note, thinking of our disastrous hospital visit where the receptionist said, “Oh my, she’s a full time job!”

She said pizza this weekend!! She’d first said “Noodles” as she looked at my pizza. I said, “Hmm, is that what you think?” And then suddenly moments later, she yelled “PIZZA!” First time ever! I think she had been telling herself she needs to find the right word. So we shared my last slice. Ok, she reached for it and I told her we’d share. A bite for me, a bite for her…

And she asked “What’s that?” When looking at a new and different kind of puzzle. We might not be holding conversations or answering questions, but every new form of communication that pops up is a cause for celebration! Hoping for better times. Thankful the good ones already existing.

Dear Caregiver of a Newly Diagnosed Autistic

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I don’t want to say “Dear mom,” because I’ve seen many caregivers of both genders. I’ve seen very dedicated dads, and extremely protective grannies. Remember how the autism workshop I attended had many grandmothers there, wanting to help their autistic grandchildren? So no, this is not a dear mom letter, it’s a letter for all those who love and care for autistic angels.

You are shocked. You are shook. You suspected but hoped for the best. You know that disability makes life harder. That’s not the dream you had when you imagined being a parent. And let me be specific. I mean this letter to be for those who love children who aren’t able to express themselves clearly. It’s for those society misunderstands or looks down on the most. The ones people assume can’t reason, can’t think. The ones some parts of society views purely as a burden.

My son was six months old when I confidently stated he was autistic. He wasn’t making eye contact, he didn’t babble in his two years. There was just silence. He hated touch. He hated life. It was just too overwhelming, those sounds, smells, lights and feelings on his skin…

But today he speaks, he more than babbles. He touches, he smells, he appreciates, he loves with his whole heart.

Or, what if you’re the mother of a child like my four year old? What if your baby did develop ‘normally?’ You definitely didn’t think anything could go wrong with his or her development after 18 months of bliss. They were meeting their milestones, smiling, hugging, giving baby kisses, interested in you and their surroundings, loving their siblings’ attention, reaching out to you, to them. Love was so evident.

Until they didn’t do any of that anymore. Silence filled the air. It was heavy and loud. The smiles disappeared and the kisses vanished. You no longer seemed to exist. Where was your baby? Where is your baby? Who is this current baby? You never imagined having a child that stops to feel the ground you’re walking on. You never thought your smiley baby would not look you in the eye. You never dreamt their smile would ever disappear. The bond she had with her siblings disappeared, as seen in my main photo where my angel turned her back on her twin sister when she went to sit with her. Will your old baby ever come back?

I don’t know. I can only tell you that she or he might yet surprise you. My child is not the little two year old who was diagnosed. She didn’t want us touching her. If her twin sat next to her, or tried to touch her, she pushed her away- hard. Her words disappeared. And then for months after the terrible silence, we only heard crying and songs, oh, she sang. But now at age four, she actually not only doesn’t push her twin away, she even pushes herself forward in the bath, making sure as much of her legs as possible are touching her twin’s legs.

She even goes out to play with her siblings. Something we never imagined her doing. No, she doesn’t play with them, but she seeks their company. They feel a connection they thought was lost for good.

I don’t have my old baby. This one is hard to handle. She has terrible sensory dysregulation. She can’t tell me why she’s miserable so often. I thought she would have stopped crying by now. But ..she’s not the baby that was developing typically. She can’t tell me what’s wrong. She breaks my heart more than a speaking baby would because I don’t know what she’s thinking, this one is a mystery most of the time. She’s not the baby I had and she won’t be.

Autism is forever. But so is my love.

And autism doesn’t stay looking the same as it did.

So comfort yourself with that. Your two year old, three year old, six year old is not the autistic they will become. There is always, always room for hope.

We went from no words, to words asking for cereal, milk, soya milk, grapes and ice lollies. For us, she’s reached PhD status level! And that’s the beauty. Appreciate who your baby is even when it’s hard, who they might become will then be a bonus. I didn’t need words to be spoken, I just wanted communication. Even nodding would have been ok. (Ok, I still would prefer nodding too so I know I’m on the right track when I have to guess what she wants. I have to be real!) We didn’t sleep for three years until she was medicated for her extreme moods. And it’s not plain sailing even now though things are better, don’t think I’m telling you THAT either.

We had a horrific doctor visit today in fact. But as she screamed and everyone turned to stare in that hospital reception area, I held my head up high.

This is my baby and I love her with all my heart. What matters most is not who she was, but how to help her be the happiest version of her current self she can be. And that meant (for us specifically) getting away from the automatic doors and lights and strangers today. Tomorrow, it will be a different battle. But we will fight it together.

And I see that same strength in you in your weakness when you come online wondering where to find a school for them. It’s the same weakness I have. I am desperate for help. I marched with Autism Western Cape, begging the government to help us. The strength is in your deep love. You’re not giving up even though it is so, so hopeless and so, so lonely.

May the fire of your love for your child keep burning strong and bright. Keep advocating. They might not show you they love you in the way you’d expect it hope for, or in any way at all, but they definitely need you. And that’s what parenting is about, isn’t it. Being what our children need. Autistic or not.