I will do my best to explain where my head and heart are these days. This weekend was rough for me, everything was bubbling over till I finally exploded or imploded...whatever it was, it just wasn't pretty.
It all seemed to start in the spring/summer. Too many things going on to fully explain and frankly each one deserves a full blog post on its own.
: Brayden - when can we reach a plateau, a steady time with him? There is something to constantly do, a doctor to call, a problem to address. I naively thought he would only have one appointment this entire summer and trust me he had plenty more than that. His needs have become so complex. I am literally the only one who can care for him. Jeremy can only do so much, obviously because he works. I am the one to go to the appointments, handle the insurance, medications, supplies, etc. Which is totally fine but it has its moments of feeling isolated and too much pressure of being the only one "qualified" to make decisions regarding Brayden's care.
: Carter and Luke - I have been stressed this summer and unfortunately I feel like the fall out from that lands on them. I have been grouchy, then I am short with them. I PROMISED them at least three times this summer that we were going to an amusement park and every time something major came up for Brayden and we never made it. They are so patience and loving. I have had to apologize too many times this summer for not being more understanding and kind to them.
: Mother Bear - being protective of my children. Brayden has seizures and they are painful and frightening to watch. Yet, he has them ALL the time. And we hear terrible "warnings" about not recovering and/or breathing problems during or because of seizures. Brayden vomits violently too many times in a day. He has days when he is uncomfortable in his own body. As a mother, all you want to do is to make the pain go away...and when the best doctors are doing their best and this is what we have to "settle" for, then it hurts. I hurt for my child. And I want to protect Carter and Luke, praying that having a brother with medical needs doesn't damage or hurt them in some way. I never want them to feel like their are less of a priority.
: Jeremy - when he and I are off, the whole thing is off. He has been incredibly busy with work, more so than ever, even since I have known him. This summer was not filled with fun family outings and quality family time that I so wanted. It was consumed with everything else. Days would go by and we barely had sentences with each other. Not because of anything bad, just not enough hours in the day. Then with all fall activities (starting in Aug) our time was/is more consumed. I felt as though I could not/was not able to share my needs/emotions/stresses with him and holding way too much in to myself. And he has been too stressed to hear me.
: Double life - we live in the medical special needs world with a son whose needs require meticulous care and attention. AND we live in the "normal" world with Carter and Luke trying to give them every opportunity.
: Help - we had a bit of a rough summer with Brayden's nurse and unfortunately we had to say goodbye last week. She became part of our family. She loved Brayden. But it was no longer a good fit. Now, we begin the process of looking for another nurse (which took months last time).
: Stuck - Jeremy and I are not the best "lay around the house" people. We like to be out doing things. As Brayden is getting bigger, his equipment getting bigger and getting out get harder. Oh, how I want a fabulous trip just to get away. We joke that if we did not have Brayden we would probably spend too much money on traveling. However, it did help to have a pool this summer.
: Being a mom - as some point in being a mom you realize that your life becomes nothing about YOUR life but about taking EVERYONE else around you...taking care of your self quickly gets put to the bottom of the list. Being a mom is such a joy, loving your children and husband is precious, so most of the time you gladly put everyone else's needs first...but man it can be exhausting.
All of it just kept building up. All of the above came crashing down on me this summer. I know I put to much pressure on myself to get everything just right. I have high expectations for my family, for myself.
All I really need to do is just surrender...