What I've learn from having a chronically ill child.

When I became pregnant I really didn't think my parenting journey would look like this. I didn't think I'd be spending so much time in hospitals, seeing specialist and caring for my sick child.


But it is, this is my reality.


I've learnt some really solid life lessons since having River.


+ You are your kid(s) voice. River is so young he can't tell us what hurts and how it's affecting him. So, it's my job to voice my thoughts, concerns and push for all the answers. I'm not a super loud person, I'm a bit of a push over and it has taken me a long time to be here and I am still working on this.


+ It doesn't get easier. It really doesn't, sometimes I think it gets harder. The older he gets the more he realizes this maybe isn't normal.


+ Not everyone will stick around. You lose friends. Some people don't understand that you can't do all the things anymore and your priorities are different. This can play for moms of healthy kids, you will always lose some friends. Everyone has different things going on and not all continue on with you. BUT some really stand up and become your everything. I've really realized my true friends. The ones who message to see how River is, the ones that visit and understand that if it takes me 5 days to answer a text its not because I'm ignoring them. More than likely River's just pulled his NG tube out two days in a row and I feel like my head is screwed on backwards LOL!


+ You can really see how great a community is. We come from a small town in Ontario. We have like 4 towns that kind of make up our municipality. No matter where we go people are asking about River (this can get overwhelming sometimes) but we truly know everyone just cares. We have communities through my business and Luke's job. Both have been so spectacular. We are really surrounded by the most amazing people and community.


+ You have to get past asking yourself why you. This is your life. This could be short lived or forever and it's something you cannot beat yourself up about it. River struggles, but majority of the time he's just a 6 month old baby doing 6 month old baby things. This is no ones fault, and things just happen. I went to my medium last time after River was born and she said "Do you keep asking yourself why shitty things keep happening to you" and I said yes, she then said "because you are here because you can handle it and you help others when going through things". I truly believe this. Shit happens, and if my shitty parts of life can help others then I want to help. Helping others helps me heal.


+ There will be people who are trying to compete with you. I honestly NEVER thought this would be a thing BUT it is. Sometimes it's like people are trying to out sick your child. It's super weird. Just don't let it get to you, sick children shouldn't be a competition.


+ You've become a google doctor. You've searched and searched even though everyone tells you not too. You try and find all the diseases it could be and possible cures. You read that some have not so good prognosis and pray that isn't it. You sit night after night googling and googling and googling.


+ You don't sleep (or not great). I watch my son breathe on the baby monitor a lot. We have to take him if in if it worsens so I'm constantly watching. I'm honestly surprised he doesn't sleep with us because I'm so paranoid. Every 1 hour I'm checking his chest for any worsening retractions or a fever his colouring of his skin. EVERY LITTLE THING.


+ Your life will be CONSUMED. I mean consumed. If I'm not doing tube feeds, cleaning tube stuff, going to doctors appointments admitted into hospital I'm back to googling.


+ Everyone knows someone who has had this *insert eyeroll*. Sorry, but I don't want to hear about your cousins cousins who's twice removed.


+ Inserting an NG tube down your kids throat isn't as bad as you imagined. I honestly had the WORST anxiety leading towards learning how to insert one. But, I have done it so many times now it's like second nature. I can't say I enjoy it, but it's gotten easier. The hardest part is him screaming and trying to hit you away. He hates it and that breaks your heart. But you know he needs it to thrive and thats what matters. If he didn't have the tube he wouldn't have the energy to play with all the toys sooooo in goes the NG.


I know my journey isn't over, it may never be. My list will grow and I will learn more things. Some may be easier to learn and some may tear me apart. I wouldn't choose this life, but it's our life. My son is my life and the reason I keep going. He brings so much joy into my life and I will be by his side every step of the way. His journey is my journey now until forever.





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