Holidays!!!

Though it's the middle of winter in our country, we too have a June/July holiday. Here we close for 3 weeks during mid-year. It's perfect! Where I live (in the Northern parts of our country), the days are mostly mild, sunny, and actually perfect in winter. Not too cold as long as you have a jacket on, and there's a serene quietness outside that recharges your soul. I hate winter, but I love the weather during winter where I live. So we spend alot of time outside in the winter. The kids plays for hours on end, and we sit in the sun, eat outside, braai (barbeque), colour in or play ball games.

So our days have just flown one into another. Quiet, happy, beautiful. I've had loads of time to contemplate my life and the past year, and like I told a friend last week... I realise that I lost myself. The day the cardiologist told us that our little Monkeyman had a severe, life-threatening lung-heart disease, my life came to a screeching halt. People has asked me so many, many times "how do/did you cope". I can now honestly say that I didn't. I'm not the wonder woman or supermom some thought I were. I didn't try to be. I fell apart. Totally and completely. I lost myself, and I lost perspective. I went into high adrenaline, superdrive, and I charged like a bull towards my target with absolutely no regard for anything or anyone, except getting my child healthy again. The only way I knew how, was to research, join groups, download medical papers on his condition and read as many blogs of moms going through the same as I could find.

This of course, lead me to make friends with a number of mommies whose going through much, much worse than we had to. Mommies that had to watch their children deteriorate to the point where every breath they take, is painful and inadequate. Mommies that had to make the torturous decision to either let their child go, or put them through a double heart-lung transplant and maybe get another couple of struggling years with their child. Some mommies didn't have that choice, and had to say goodbye. Sometimes without warning, sometimes knowing that they're spending their last precious hours, days or weeks with their irriplaceable, very much loved child.

This changed me. It threw me. I lost it. I didn't/couldn't cope. Facing that with my son, my 5-year old little monkey... I couldn't so I lost it. Totally. I went off the rails and I lost perspective. I couldn't see facts from fear. It infiltrated my every thought. All day, every day, for a year. I couldn't have a conversation without thinking about Monkeyman all the time. I couldn't empathise with other moms, because all I would think was "my son may be dying". I couldn't socialise normally, so I withdrew from friends and family. I couldn't look in my other children's eyes and admit that there's something very wrong with their sibling.

When Monkeyman was cleared from the pulmonary hypertension threat in August last year, it took time for his enlarged heart and arteries to shrink. So it wasn't like we could take a deep breath and sleep soundly again immediately. And by the time that happened, he was diagnosed with a thinned heart wall, abnormal blood tests and "something up in his lungs", plus the vague possibility of a mitochondrial illness. So we went from fearing about one thing to fearing other diseases. No parent should have to face that in their child. The ups and downs of the past year... it threw me.

I'm not 100% back to who I was. I'm not sure I'll ever be able to. There's been many defining moments in my life as a mother, and everyone of them changed me permanently. The day we were told our son has epilepsy and needs a brain scan to see if there's a cause (like a tumour). The day we were told our daughter's back operation was invain (disproven 2 days later, but still). The day we were told Monkeyman has something really wrong with him, called pulmonary hypertension. The day the psychiatrist said she believes our daughter has VCFS. The day I looked at my 2 month old's grey face when she stopped breathing. There's been many moments like these that has changed me. The past year, there's been too many of them, and I fell apart.

I tried to keep it together. I grabbed at everything I could to hang onto. I have obsessions. I never realised it as clearly as I can see it now. But that's why I am so exceptionally good at researching. If I'm interested, I can gather an immense amount of facts, and I can easily remember almost all of it. It has helped me when my daughter needed it with the occult tethered cord diagnosis. I thought, no, I believed that my son deserved the same. I couldn't do any less for my son, than what I did for my daughter. So I researched. This time though, it didn't involved my daughter's continence, it involved my son's life. And that made me stumble. I lost perspective, and I lost my positive, happy disposition.

This past week, I've found myself again. I'm happy again! I'm confident again. I'm at peace. I believe that we're taking steps in the right direction, and I believe the road we're walking with my son will end soon, and it will have a good ending. I'm not desperate anymore. Believing that if I don't research, don't gather the facts, don't read everything, I'm gonna fail my son and he's gonna die.

I'm not in that place anymore. Due to a number of factors that happened at the same time, I was pulled out of there. And I'm doing well now. I'm happy, I have hope, I have peace, and I can see the road ahead again!! I'm not in the deep dark pit anymore. And I'm so grateful. I'm still going to fight for my boy. I'll fight tooth and nails for him. But I'm realising now that obsessing about it (like only Aspergers' people really can!) isn't the answer. Excluding life while obsessing isn't the answer. I need to still be me, be a mom to the other kids, be a wife, be the happy, positive person I've always been. I couldn't live in that negativity any longer. So I stopped my obsessions. Like researching. Not completely, but almost. For example, instead of researching about 3-5 hours per day, I've researched 30 minutes the past week. :-) To me, this is amazing improvement, and not something I thought I could do. But I did it, and I'm proud of myself.

So back to practicalities. Monkeyman had his sleep study!! And it went soooo well. He went with his dad happily enough, even excited. It really helped being able to explain to him that they're going to check if he has the same problem as what Daddy has, which makes Daddy needing to sleep with the CPAP machine and mask at night. They got a private room in the hospital, sharing a double bed. The wires were all connected to a portable computer that Monkeyman had to wear on his body. So he was mobile, able to go to the bathroom and have a good night's sleep. He loved the food they got, and spending time with his dad. They were told the results would take a week to be processed, so we're waiting for his doctor's call by next week. Early the next morning they were discharged and came home all excited to tell his siblings about everything. He said he missed me, but my whatsapp message meant alot to him. Thank goodness we got my phone working again just before they went to bed. It was quite an ordeal!

Some vandals sabotaged our electrical substation close to where we live. This caused a power outage for 3 full days! Happened from early Sunday morning until Wednesday night. The sleep study was on Monday afternoon. That morning, we realised that it's gonna be a loooong time without power, so my husband fixed our small generator to power a small freezer. And recharged my phone! It ended up being quite fun, having no power for 3 days. For three days, we didn't go on the internet. We didn't play online games. We didn't chat with any virtual friends. We didn't spend hours on our tablets or computers. We played games with the kids for hours on end. Ball games, card games, creative projects, board games, it was so much fun. We cooked kettles on our gasbraai for our baths, and for coffee. At night we braaied (barbequed) some of the meat that would've gone off and ate like kings. We put on little lanterns and loads of candles, and had little concerts with the kids at night. We ate chocolate and played Uno by torchlight. The kids were exceptionally good and helpful, and Mr N even helped his dad fixed the generator. When the lights went on on the Wednesday night, we were caught by surprise. It was almost as if we were all reluctant going back to our busy lives. It was a really good 3 days, and one of the reasons why I'm so happy and at peace currently. The holidays are really great. There's still 2 weeks left, and I intend to enjoy every minute of it!