I haven’t written in a long time.  There’s so much that I haven’t done in a long time. Things that need to be done.

Zavier has taught me so much.  Inspired so much.  But lately it’s been really, really hard.

My husband got a great job and was doing amazing.  But he left it.  For our family.  For me, quite honestly.

This blog was made for Zavier.  To share the realities of living with a child who has significant special needs. And lately the reality has been so hard. 

Our bedroom has no door. He kept slamming it over and over until the screws in the hinges came out. 

His latest favorite activity is to pee. On his bed.  On our bed.  On the floor.  On himself.  We bought onesies for him that he can’t take off.  But we were working on potty training because he’s 8. And now it’s been hindered.

He has a cubby bed that we have have to zip him inside of sometimes because he gets so angry and throws things. 

When my husband was working,  I was barely able to get my work done.  For my job.  For my career.  For a career that I love.  That I earned a Master’s degree in.

So my husband left his job so that I could keep doing mine.  But it’s still hard.  And it’s hard on him too. He has to have knee surgery, but there’s very little rest when you have a child like Zavier.

He’s an amazing dad though.  He’s taken in 3 kids that are not biologically his. The oldest 2 are from my first marriage.  He came full time into their life when they were already teenagers.

My youngest daughter met him when she was 3. She’s from an unhealthy relationship, but she’s the best thing that happened from that experience. 

My husband has raised her and loves her as his own. Every year,  he takes her to breakfast for her birthday.

He’s started to do something for my oldest daughter as well. My oldest son is fully grown and lives in another state, but they have done a few things together that were special.

Things have been really hard the last few months. We were feeling hopeful and excited when my husband got his job.  And now we’re stressed again.  Less money in an economy that is trying to take every cent we have.

We fought for medical Healthcare for a year after Trump took office. Before Trump, my son had full medical coverage. Then Trump took office and Elon and DOGE cut jobs. 

We had to decide on which bill not to pay so that we could afford his immunosuppressants.  All while trying to pay for ways to keep him from destroying our house.  We’ve installed locks to keep him out of our bathroom after he flushed his toys and poured cups of water on the floor.  And we have cameras in every room.  But we are exhausted.  And we are struggling financially and emotionally. 

It’s hard to love your child so much and watch them destroy gifts you bought your husband,  doors that give you your privacy.  He even once poured out his very important immunosuppressant medicine.  Thank goodness it was after we got state medical again.

The thing is, this administration has hurt us.  Life is really difficult most days.  But my husband is amazing.  We’re about to hit our 5 year wedding anniversary.  And in December,  it’ll be 10 years of being with each other. 

Through thick and through thin. Through sickness and health.  Through step children and children with disabilities.  Through financial success and financial hardships.

We’ve been through it.  And every day, I’m so thankful that I have him.  A man who has shown me every day that I matter.  That my happiness matters.

I love you Marc.