Special Needs Mom

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As parents we strive to do our best and at the end of the day lets face it, we just want to survive and for our kids to survive.

(yay we lived today, onto tomorrow!)

 

Hi there welcome to my blog if you haven’t been here before…. I’m 31 and I’m a mother to 2 beautiful girls. One is my bonus child who is growing everyday into a beautiful woman ready to take on the world. The other is my sunshine girl, her name is McKinley and she has complex medical needs including life without words on the autism spectrum. This kid has my heart and she loves her family very much. She has taught me more in 4 years than I could ever imagine possible.

Growing up in life I never knew I would be a mom, let alone a “special needs mom”. But here I am, doing my best and trying to learn all that I can to provide for my family and our life… her life more or less. There will always be bills to pay, appointments to make, places to go and billions of grocery store trips for any family. When you welcome a child with medical needs all of that becomes more. You pay for more things and are more than likely in debt. You have so many appointments that you struggle to keep up with them all, some are even out of town and you fear on how to pay for those trips. You have lots to do and even more shopping trips to provide healthy options and make sure they are just eating in general.

I never knew the challenges of society with those who experience disabilities and how some look down on others for such reasons. It’s wrong on so many levels, and sad and now it just boils my blood to a new extreme. I’m a redhead don’t piss this mom off. But people do not care, they stare, they say things and they offer looks of disapproval. Some are even parents themselves, they teach those actions to their own kids by acting that way. Society is scary and sad and my biggest fear is now leaving my child to that very society once I’m gone someday.

When my daughter was first diagnosed with Autism I remember thinking Oh wow just another thing to add to the list. At the time she had already been diagnosed with Cerebral Palsy (a mild form), VSD heart defect and a major Neurological issue with her brain so I didn’t really let it phase me. The thing that did phase me was what we were then offered as far as help from services. We do not get SSI (we will not until she is 18 due to making too much)… she does however get OHP as a secondary insurance and some help from DD services. The thing that didn’t sit well with me was with all of her other medical challenges she got more help with having Autism than she did with any other of her medical needs. Now I’m not saying that Autism isn’t serious, or shouldn’t get helpful resources but my daughter wore a helmet and used a walker for a whole year. She can not process things correctly daily due to missing a little portion of the white matter in her brain. She has a hole in her heart that is NEVER closing and none of that got her the therapy plan like she does with Autism.

I have met a lot of ladies along the way with stories like ours or a little different and I have recently learned the importance of solidarity. I think this is one of the most important things I have found through my travels of Mom Life with my McKinley. Without those ladies and families I would be alone, yes I have friends but they aren’t living this life at all. They can go on mommy/daughter dates and not be a helicopter parent and so much more. I have truly found respectful friends and not just honorable mentions.

When it comes to local resources I have learned the importance of what it means to advocate for others and for what I want to see different. Where I live in Southern Oregon we need more Early Intervention for kids. Right now the program offers 2 days a week for around 75 mins a time, I wonder if this is normal in other states??? I have heard a few stories mention 4 days a week. We have very very limited places for child care with kids with medical needs. And even help for those who are struggling financially or with buying basics. We need more help for those who work and just want to provide a good life for their family and their child.

I have learned a lot about myself… I have even learned to remember to have fun again and try to dance in the rain. The first few years of being a mom to my little one were hard! really hard actually… I forgot how to relax… I also forgot who I was inside at one point it was bad for everyone…so take my advice please and Do not forget who you are!! When I did that it took me a whole year to come back from the time I lost. I gained weight and I was unhappy and a mom to a child with medical needs, made things worse and I thought too hard… to top it off my husband and I got into a lot of fights over life. He is my best friend I married him for all the right reasons, but yeah having a kid with medical challenges in fact challenged us and we are stronger now. I also read Girl Wash Your Face and I took her advice on marriage… read it and live by her suggestions seriously. I have started a new process on me… I have implemented girl time, me time, eating healthy and being happy and making love to my main squeeze… all of which = happy wife, happy life. Most importantly do not belittle yourself over your own flaws, we all have them.

I have fought inner battles of depression over this whole Mom Life adventure that I call my own. I know a lot of women go through things like this. I myself think too much and have panic attacks on the amount of debt from medical bills, wanting to live forever to care for my daughter, trying to understand the horror in this world and even the simple things like what do I wear tonight…. I’m far from perfect and I have had plenty of moments where I lost my thoughts to the deep dark parts of my soul. But I stood back up and I kept going.

Mom Life is hard… being a mom to a little person that has no words to say “mommy I love you” back is insanely hard… I dream about her little voice coming through and saying anything to me… I dream about her future and it’s gut wrenching to think of all the what if’s life brings to the table. But no matter what being a mom is hard and mom life my friend is a rocky, amazing crazy ride.

Thank you all for following my blog.

More good stuff to come 

Until next time

-K-

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Mom and McKinley

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