I FINALLY got time to go for a prayer walk this morning and just chill with the Lord. I usually do this a couple times a week, but life has been so chaotic recently that I have not been able to carve kid free time out to do this... and man was I IN NEED! So glad I could make the time this morning. This post is mostly going to be fun pictures I took this morning mixed with random thoughts that are demanding release from my brain.
One of the things heavy on my heart right now is Nathaniel's health. We have been on a roller coaster with the craziness with his foot for the last couple of weeks. (If you missed those posts you can catch up HERE and HERE)
When the sensitivities finally came back Nathaniel had THREE separate strands of Staph in a a foot with no open wound on it... Not good! The treatment options were difficult and thoughts on them were varied. But we came up with a plan that his primary doctor and I were good with, and Praise the Lord, it seems to be working. So he is wheelchair bound again, with his zero bearance brace on again, on heavy duty antibiotics, and we are treating the wound area daily. The chair is not much fun for any of us, but it makes me so thankful that it is not a constant, everyday thing in our lives yet. The brace is no big deal, he always has some sort of brace on his feet, so it's just a different one. The antibiotics concern me, but I know it's the only way to treat this infection, so I am dealing with it. The wound treatment is the part that is killing me. His doctor put in for a home health wound care specialist to come by a couple times a week to check it and help with the wound care, but of course his state ran insurance refused. So I am still doing all of the packing and dressing changes... and loosing tons of weight in the process! And I am not really sure that it is looking perfect, but it is improving... so I guess that is all I really need to know... Ugh! We go back and have it checked on Wednesday, so I am hoping for some answers on how it looks then.
In the past 6 weeks or so I have taken a really hard look at life, our family and what exactly we need to be supported and survive in a positive manner. I have faced some pretty hard realities as a mom and as a person, but I think my heart is coming around to the needs and what my head has been hiding from for a while now.
One big and hard decision was to seek psychiatric support and put Nathaniel on some more medication. I knew that the plan would be to medicate him into a state where the negative and harmful behaviors were gone, but I was very concerned that he would be so medicated that he would loose his personality and be sort of like a zombie. But in truth, I am so happy with the results I am totally kicking myself for not doing this sooner!
Years ago in the medication search for him we found the key that unlocked his brain. It was night and day different and so obvious that this was the right answer for him. When he is on his "thinking meds" as we call them, it is like a TV that is full of static or snow and someone adjusts the antenna... all of the sudden he is more clear, he is even old enough to notice the difference now. I prayed and prayed that it would be the same with the new medications, and God is ever faithful. Nathaniel always had this angry edge to him, any conflict or expectation he didn't like sent him into a fit of rage. Very physical, violent rage. But with this new medication it is like the edge has been removed. He still gets angry and frustrated, but he doesn't go straight to violence, he is much more teachable and redirect able in the moment now. Again, it is night and day difference in our household! We have not had a physical outburst or rage in 21 days!!! Before we were completely lucky to go 2 days between rages. All of the bruises I so regularly had all over my body from him have healed..... Things are so different in our house right now, and it is a peace that I can breathe in!
I know that the medications have side effects and risks, but to me keeping him at home and out of a group home is completely worth the small risks associated with the medications. I am not advocating this for everyone, it was something I completely had to pray over and come to terms with, but for our family it has made an INCREDIBLE difference and we are so happy!.
A few weeks ago I went to a seminar on neurological brain damage and helping people with it live to their fullest potential. It was completely eye opening and enlightening to me, but it also made me face some hard choices and readjust my brain. I think it will have to be it's own post. But it did make me take a hard look at the supports that we have for Nathaniel and assess whether they were the RIGHT supports for him. And I think not. I think it is time to move away from ABA Behavior support and move towards a daily living aid type of support. It is going to be hard in many ways (finding the funding, fighting for the need and filling the staff positions) but I think it is what both Nathaniel and I need. I also think that is will help with Audrey too... that poor girl does not get much of her mommy because I have to deal with Nat's needs all the time. I think this road will help balance our family life o much more. Won't you pray for us on this journey?
I really am at peace with my being done with Butterfly Boutique. I fully recognize and see that it is time for me to be at home with my children full time. But what I am not so much at peace with is the loss of Butterfly for our community. I have prayed so long and hard over this one, and I still feel like there is this 11th hour buyer hanging out out there. It is a crazy feeling (and I am wondering if it is just me not wanting to do the hard work of tearing the store all apart!) but I just can't shake it. We are coming up on the last two weeks of business and there is SO MUCH to do, yet I find myself organizing for the "new owner". Crazy......
A scripture on my heart constantly these days
Matthew 6:25-27 25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life? "
God is faithful. He CARES. He provides. He is. That is all I need to get through each day. I am resting in these truths.
The subject of friends seems to be "in my face" these last few days. At home group, at therapy, in my heart and in my desires. It is trippy and I am sure there is a message from God there somewhere, I just haven't figured out WHICH message it is yet. I know the message that I hear is that I miss my two nearest and dearest friends. The ones that look at me and know when I need a long hug vs. when they need to speak truths to me in love. The ones that can speak those truths, but are still right there with you to walk it out. And I really am missing the one that I can sit out under the stars with and talk for hours about the hard things in life. But, alas those friends are so far away right now, and they both have their own lives, so here I sit, virtually alone with only acquaintances (and I have so done that to myself!). Is it time to get real with someone new? And do I trust enough to try after the multitude of someones who have heard my heart and then ripped it to pieces? But on the other hand, can I really keep going alone? Ugh. I see why the Lord keeps putting this subject in my face, I am just not sure I have the energy to walk forward on this path with so much else going on, another betrayal will knock me off the path right now.
Ever feel like the ship lost at sea just riding it all out? That is me these days, but thankfully I know my Captain has the plans and knowledge in His hands... I am just along to gain my sea legs.
Praying that I get those sea legs soon so that this lesson can end!