Marriage/Family/Partnership

Taking a break from telling our medical story to focus a bit on something that is just as much a part of this journey as all the labs and tests. This was later in the planned series, but it has come up 3 times in the last 24 hours in the support groups, so I decided  to publish early.

Marriage. One of the things I have learned a lot about about second hand is how the stress of medical needs can break a marriage and a family into jagged little bits.

There was a sci-fi story I once read where the mom's wish was to make her special needs child less hideous, the wish granter gave her a task, she had to disappear for a month, no contact. When she came out of this hermitage, she changed her wish. Her wish was for her own heart to change, for her to love her child just the way she was.

Though this was sci-fi, and there were other plot points going on, this particular story element stuck out. Another short story I read was called Only a Mother, about radiation mutations and the mother was writing about her baby as though nothing was wrong, though the baby was in critical needs state, born missing major systems.

Two totally opposite ends of the spectrum. One mother in collapse from not being able to love her child with needs, the resentment overtaking everything, and the other in total denial.

Both stories were mothers essentially operating in a bubble with no support, at least that was shown.

It reminds me of something I read recently, "Under pressure, when we get squeezed, what is already inside comes out." This. This is what I am saying about special needs parenting. You don't get transformed into a super hero, what is already there comes out. The same goes for a marriage.

Support is absolutely critical. At least it is for me. Chad and I married young. Really young even for our peers. We just knew. When you have something so wonderful and fun and full of love, you don't wait. We did wait to have children though, nearly 7 years. A lot of that was due to infertility, but when we became parents it was so sweet and perfect and at just the right time. Each time love surprised us again with a new blessing, it just made our love grow.We've been married 15 years almost, together since 1996. That's a long time, half my life almost!

I'm not saying we don't fight. We do. We yell and get mad and slam doors and get cranky just like everyone else, I get mad when he steals my dish soap, he gets mad when I leave wet towels on his side of the bed, but we recover.

How does this relate to our special needs journey?

At first I was really overwhelmed with going to all the specialists alone with Isaac, or with girls in tow. It was so stressful and my sweet girls, when they get stressed they amp up the vibrant, colourful, cheeriness that is their play. Like tornadoes of girl. Not exactly a good thing tagging along to doctors appointments.

I struggled with this alone. I fumed. I resented. I worried that I was taking everything the wrong way. I was angry all the time on the inside. It took nearly everything I had in me, leaving nothing, to just seem cheery to the medical professionals (because crankiness gets written in your file and you can get a reputation for being one of "those" mums....) all while standing by our lifestyle and beliefs, seeming optimistic to family members, loving to my girls, and at the very least present for my friends. I being drained like a glass pitcher with the bottom shattered out. I would cry in my car. I felt so alone.The unknown looming like a storm front, the warning sirens going off, everyone running for shelter, winds picking up, but still no rain. Not yet. When will it pour down? Will it drown us, tear our house down in a splintering explosion, steal our sweet baby forever?

Why was I doing it all alone? 

One day Chad came into the kitchen and I was crying at the sink. He hugged me. I doubt he even remembers it. But I do. He just hugged me and being in his arms was safe and perfect, just like it had always been. Nothing had changed. We talked.

So I asked for help. I was so worried about asking for help. I don't trust anyone with my kids, not even 80% of my own family. Basically I had to ask Chad to take off work and ask Grampa to sometimes take the girls.

Chad made it clear that taking off work was not something that could happen.

There were some I NEEDED him there for. Like Isaac's CAT scan, or the meeting with the ENT that we would discuss surgery.

And the trips to Minnesota needed coordination.

We worked all of that out. Sometimes he also has to be the one to take the phone calls or do the talking. When I need to I hand it over to him. Not because I can't handle it, but because I need him to. And he does.

The biggest thing Chad has done through this entire journey is listen to me, just listen to me spout my fears and my worries and my hopes when they overwhelm me. He takes me seriously. This is very important. He remembers to tell me that he loves me. He's there. Simple things that really make a difference.

Except....that was a lie. He was cheating on me and slowly draining our retirement and savings. 

But what about our relationship? That part is not anyone's business. Yet, it constantly gets asked. In italics so we know they don't mean how we are friends. I blush every time. Still, you know what. My business. Our business. Not random strangers'. Not our family's. Not our good intentioned friends.

A marriage is more that that, always. If one part fails all others crumble. Chad has done a shitty job making me feel loved and valuable and when he is a crappy neglectful father, when he's gently holding a sleeping baby, or marching through pasture with a girl on his shoulders, or quietly demonstrating to a bunch of excited kids how to hook a worm, or handle a wild caught snake/turtle/giant frog? Yeah, only when other people were watching it. It was all an act.

If everything else is working, the rest will come. Chad still harasses and tries to control me, and I still try and do the things I did before we were married.

Facebook has actually helped us with being closer, even though he works all day with a long commute. He LOVES that I post every detail about our days, pictures, funny thing that get said or done. He comments and shares and posts too. We are both very involved in groups we love. Doing things together virtually does help. We both have open public pages, all posts are public. We have nothing to hide from each other or others.

He was holding my time accountable and at the end of the day accused me of being lazy. 

 I have rules I try to follow, given our relationship and family is so public. You can't possibly have a good strong relationship with someone if they are constantly posting that they are lazy or drunk or worthless or making unpleasant comments about their weight. For some reason it is pretty common for women to do this to their husbands, though I am pretty sure it is a double standard and if their husbands did this to them friends and family would be paying for the lawyers. So my rule is simple, I try really hard not to share conflict of any sort online. I have missed a step in the past year and was pretty public in two whole posts about my little sister hurting my feelings. Making that public was a huge mistake and was game changing for the relationship. I am really glad I have never done that to Chad. There are private, closed places to ask for help, facebook is not the forum for that. Our journey is about relationship, to each other and to God. Calling out our spouse's flaws does not make either stronger. So our second rule is that if either of us posts something that upsets the other, either it gets taken down or an apology is posted and it is the person who is upset's choice which one happens (sometimes taking it down makes it worse).

This next part? It was all lies. 

And we are still deeply in love. I have said before, being a special needs parent changes you, but really what it does is intensify what was already inside of you. For us, it has made our relationship more intense, more loving, more creative, wonderful, and fun. Our everyday lives reflect that joy.

We would have a harder time of it without the family support we have, but I know we'd still make it no matter what.

In 2015 Chad left the kids and I homeless and penniless while he moved in with his girlfriend who was a Burlesque dancer, 28 years old, and unemployed. He took all out money and bought her a house, didn't pay child support until the courts ordered him to, and bought her a 3000 square foot Victorian Mansion while I paid the entire court and lawyer cost. The kids are in therapy, public school, and I have primary custody. He's very happy.