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My son’s illness changed my life – but not in the way you think!

Once upon a time, I was a typical stay-at-home mother of 3 children, born with 4 1/2 years between them. I was frazzled, exhausted and cranky. It felt like the kids were constantly fighting and I felt like I was constantly yelling.  I felt like I was in survival mode, thankful to just get through the day without screwing my kids up too badly. Then, overnight, it all changed.

IMG_201931057478532On April 3, 2013 our youngest son (who was 2 1/2 at the time) was suddenly diagnosed with Vanishing White Matter Disease, an extremely rare, untreatable, terminal brain disease. This should have pushed me over the edge, made it almost impossible to cope; but amazingly the opposite happened.  I am happier, yes happier than before his diagnosis. I am calmer and less stressed. Our life changed in that instant, and the mother I became is not the mother I was. So what changed?

1. I gained perspective. My priorities are no longer muddled. Stuff = not important. People = important. What others think of me and my family = not important. What we think of ourselves = important. Clear and simple.  I no longer care what others think, nor what sort of impression I or my kids are making.

2. I prioritized myself and my adult relationships. It is easy to lose yourself when you are a parent. It is easy to make your whole life about your kids and to ignore your needs. The realization that my kids were going to leave home one way or another hit hard and fast after my son’s diagnosis. I knew I needed to have something left of myself when that happens. So my husband and I go out – a lot; I go for regular weekends away with my girlfriends; I have interests and hobbies that I make time for; I make my health a priority – I am the caregiver and getting sick isn’t an option.

20150525_1300273. I slowed down, way down. I am a naturally energetic person; my instinct is to try to do as much as I can in as little amount of time as possible. My son has limited motor control (he cannot walk or stand unassisted, his speech is slow, his hands shake). It takes him a long time to eat, I have to change his diapers, get him around the house, in and out of the car, and help him with most basic tasks. It is very time consuming. I can no longer do 1,000 things a day, I can no longer run my kids around to 20 different activities. They have to choose one at a time (with the exception of anything to do with health or safety – like swim lessons). This has meant that we spend most afternoons after school at home. They have been forced to spend a lot of time with each other and it has brought all of us closer together. They don’t fight nearly as much as they used to and I don’t yell nearly as much as I used to.

4. I allowed my healthy kids to take responsibility for themselves.  They have to. When I am helping their brother (which is a lot) I can’t help them. So they had to start helping themselves and each other.  I know there may be a time when my son gets sicker that I cannot be there for them.  I know I need to give them the tools to care for themselves when that happens.

BuckFamsamstand5. I say no – without guilt.  If I can’t do it, I can’t do it. My first instinct used to be to say yes, now it is to say no.  I try not to overextend myself, it still happens, but not as often.  My kids don’t need to go to every birthday party, they don’t need to try every sport, they don’t need to go to every school event. Just. Say. No.  I expected complaints from my kids when I started saying no, but amazingly, they don’t seems to mind at all.

6. I accept help.  This is still very hard for me. When help is offered, I try to accept it.

Our life is certainly not all rainbows and sunshine.  I am no parenting expert, and I fail a lot.  We all do.  I yell, I cry, I say things to my kids that I wish I hadn’t. I have days when I am overwhelmed by exhaustion and sadness.  But most of the time I am able to appreciate and enjoy the time I have with my kids, I know the time I have with them is finite and will never be enough.   

I was forced into a new lifestyle by circumstances, but I am so grateful that I was. I am grateful that I can appreciate all I have now and just be happy with my life as it is now, because you just never know what tomorrow will bring.

* All the images have been used with Allyson’s permission.

Follow the family’s story on Facebook: www.facebook.com/SamvsVWM

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Allyson Buck
Allyson is a full-time mother of three and part-time cake decorator. Her youngest son suffers from a very rare, terminal brain disease called Vanishing White Matter Disease.She writes about living life fully with a terminally ill child. Follow their story on SamVsVWM, Facebook, Instagram and Twitter.
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  1. I am so sorry your mom is so sick. I think your best answer shulod come from your mom’s doctor and he/she shulod be more than willing to sit down with you and discuss a care plan for her and what her status is. None of us online can truthfully discuss your mom’s case better than her own doctor because only he/she would know exactly how progressed your mom’s disease is. Good luck to you and your mom. Please call her doctor and arrange a meeting with him without your mom of course. If you live out of town, call and tell his secretary that it is imperative that you speak with him about your mom’s condition. Before you do see or talk to him, make a list of all your questions including the ones above and include questions about DNR and hospice. Good luck to you.

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