The summer has flown past. The trunks packed and delivered to Nepal. The youngest has had many ups and downs. We are working on his social skills. This is not going so well.but we are still trying. It is hard especially when we know the voices and loud and saying things like “go chase cars” , or don’t take your meds, or just loudly screeching in his head.
We just try once again, and it seems this is all we can do, one day at a time. His dad is away in Nepal with the eldest sister and her family. The break has been planned and although we had discussed it, the reality is always different. The youngest has been taking an additional antipsychotic, once a day sometime twice, and still the voices are distracting.
So I do what I can, I sit on his bed, quietly praying for the meds to take affect and for him to relax and perhaps go to sleep. And I listen for his even unlabored respiration’s as I tiptoe out of the room hopeful he will rest and feel better in the new day.
So my prayer for today is for me, for me to latch on to and hold on to the truth; That God is faithful, present, active in ,over, and through all things. That He will sustain me and hold me and that I am made in His image and that is enough. AMEN
Ten days, wow, ten days and no voices. Yes, that’s right NO voices, no pots banging, no whispers. Ten days of quietude in the youngest’s brain and for those ten days we are so very thankful.
Ten days of quiet, countless prayers have gone up over and over from places all over the world. Prayers for sustained grace and patience while the voices cavorted about in the youngest’s brain. Prayers for this quiet time.
So today my prayer is one of gratitude fo ten days of peace for the youngest, for the Sovereign Lord who has listened and heard the many prayers.
Well it has been a while since I sat down to ponder things. The youngest is still working , has increased his hours a bit from 3 hours to four, 3 days a week and a four hour dishwashing job once a week. This sounds like less than snail’s pace and it is, but with schizophrenia/schizoaffective disorder that is the best pace. We are building resilience, endurance and fortitude. It is a slow process and for me it requires lots of patience. I am not known for my patience, lol.
We have seen an uptick in symptoms, the voices with their pot banging. The voices with their talks of the cat (who was neutered) being pregnant and going into labor. And last night asking him to check and see if I was okay. I was and I checked on him and reassured him that I was fine.
Due to the uptick we have added additional antipsychotics and tried to get him to schedule some naps and rest. There is nothing we can do because we just can’t seem to figure what the root cause is. Is it increased stress, increased hours at work, thunderstorms, the death of a pet? The list could go on and on endless in the causes, and without much help at reducing the upticks.
So we solider on trying not to make it a big deal, laugh at the inane things the voices say , and just pray. I pray daily for his relief from the pots and pans banging and the voices. I pray for patience and wisdom in trying to deal with the upticks. I pray that I don’t get overwhelmed with the sorrow and sadness as I watch the suffering. I pray for compassionate employers to continue to stretch the youngest and boost his resilience. I pray for the doctor and therapist to have insight into the youngest and for his health and strength. I now understand what “pray without ceasing” means and I pray for relief because the well is dry and I can’t seem to get to that place where “my cup overfloweth” but I know there will be a time when there will be no more tears and my cup will overflow and I will dwell in the house and be in community with the Sovereign Lord. AMEN
This past weekend we had a lot of thunderstorms. It is spring and we often get them, along with lots of pollen, flowers and Easter. He is risen indeed.
Unfortunately the youngest’s brain does not respond well to the pulls from barometric changes, full moons, and other stressors. We have learned this over the past six years and we know it happens. Yet it still catches me off guard and I realize once again that he is not well , he is better, he is working, and he is still making steps forward. The chronic element is what I do not want deal with , but it is there and so I must.
Easter sunrise service was on Job 14:14, “if a someone dies, will they live again? All the days of my hard service I will wait for my renewal to come” . If you are a Christian, the answer to the question is yes, a man can die and live again, renewed and into an everlasting life. So while this renewal will not occur here in this time I do look forward to seeing the renewed son , the one he was meant to be without this horrible chronic illness.
So my prayer for today is that I will be renewed daily, strengthen daily to deal with the task at hand and no more. No more what ifs, no more wouldn’t it be nice, no more dreams of what could be. Yet continued and renewed strength, wisdom, and perseverance for the day- just one day at the time with the presence of the Sovereign Lord who remains in over and through all things. AMEN
It seems this life is all about letting go, of dream, hopes desires and just trying to hang on by whatever means possible including but not limited to praying, searching scripture, reading books on holy envy and other things as well as knitting lots of dishcloths as your mind can’t settle enough to follow a pattern with any more than basic stitches. Ahhh, deep breathing this morning, deep sighs.
The youngest is off at work. He had a rough couple of weeks with his sister being hospitalized and then there was a gigantic full moon which always pulls on his brain harder and in a way different than it does mine. Things to let go- any sense of “normal” around here lol.
Sister was released after 10-11 days, she only took three doses of medication, has done all her follow up appointments and has gone back to work. Being the person she is , strong, self-directed, I expected nothing less than full steam ahead.
We are flirting with spring here, one day in the 60’s, the next barely edging out of the mid 40’s. The sap is running as witnessed by the budding of everything, the pollen, the birds, the bee and the greening of generally everything, whether by pollen or chlorophyll.
So today my prayer is for letting go and leaning in to what is rather than dreaming of what could be (either disaster, valleys or mountain tops and elation). Sometimes being in the present is hard especially when this world calls us to be constantly forward looking and thinking. Since we can’t change the past, and aren’t promised the future, truly we should stay in the present, without dreams and just know that whatever comes , comes with the presence of the Sovereign Lord, who remains in all things, over all things and through all things. AMEN
Just as the youngest gets settled and even though it is a different place that we would like at least it is steady, routine stable —and then : the second daughter is admitted to a mental hospital. She is non compliant in taking meds, has filed a patient’s rights complaint, and the powers that Be have changed her from voluntary to involuntary status. And we are powerless, because she is an adult and we have no POA in place we can’t talk with the doctors, therapists or anyone and we have limited contact with her.
There are many thought that have raced across my mind these last 48 hours and none of them were positive as far as outcomes go. So my prayer for today is for wisdom for her, wisdom for me , peace in the chaos because the Sovereign Lord remains in all things, over all things and through all things AMEN
The youngest has been home about a month and we are all adjusting to the new routine. Some obeservations include, calmer demeanor, more smiles, joking with me and dad, keeping up with chores and calmness in general. These are all good things. Sometimes we don’t appreciate these little things and yet when they are not present
; we miss them sorely. Take a minute and appreciate those little things right now, because in the next minute they can change.
We hope that during this period the youngest is at home that he will continue to take steps forward, and he is. Just last week his boss let the youngest know that he would get some extra time at the office working with job placement. And so we will see. Resilience is defined as : (dictionary.com)
- the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity.
- ability to recover readily from illness, depression, adversity, or the like; buoyancy.
And the buoyancy, elasticity of someone with a fragile brain is always something to discern, and is hard to comprehend. I am in awe of the progress the youngest has made with all the struggles he has had. Like the energizer bunny, he just keeps going, pots banging, voices yelling he still went to work,did his job and kept moving forward. One more thing to say about “returning to the original form”; as a Christian living in a broken world my original form has not yet come to pass, and when I get to my eternal life I will be made complete, the original form, who I was meant to be, made by the Sovereign Lord. And is so for all believers and it is true for the youngest. Yes we can and hope to continue to build resilience and endurance into this life in this broken world. We can also perhaps build some mental agility into the youngest’s brain so that he will be better able to recognize triggers for his anxiety, which in turn triggers stress hormones, which then turns into voices, pots banging etc. . Is this easy, quick, noticeable- no; it is a hard slog through many trials, some successful, some not so much.
So my prayer is for patience in the process, celebration of all the good things, encouragement for the seemingly microsteps and praise for the Sovereign Lord who provides strength, wisdom and guidance from the Holy Spirit. Thankfulness for the Lord who remains in all things, over all things and through all things. Amen
So we end this year having seen lots of progress as well as lots of new insights. Some of the insights are not what we had hoped for or even considered but they are in front of us like bold print on crisp white paper. And they cannot be denied or down-played because they impact the youngest and his quality of life.
We have had several ER visits, several medication changes and one hospitalization. We have also seen the youngest go to work, be successful in a job and search for an apartment -all good an positive things – Except …..
We are faced with the fact that he has a fragile brain, not in intelligence because he is quiet intelligent, but in the fact that almost nothing triggers stress hormones which in turn trigger voices, pots and pans and General bad stuff. This is what I mean by fragile brain. Like last Friday-he went out for his daily run, in the rain which transitioned into a downpour. His phone got soaked and it shorted out. He let us know something was wrong and we went and found out the phone was insured and got a replacement phone. But the anxiety and stress hormones from that one thing caused voices to occur, sleeplessness and he was still not feeling good this morning. He got up, ate his breakfast and went back to bed for another hour or so. Fragile brain syndrome I am calling it.
This puts things in perspective because while the voices are not here today, what happens when the triggers are activated day after day ???? I think we have seen that this year with all that has been going on. Can we put things in place so that when triggers occur he is able to step back and pause, can he notice the triggers himself and pause, and how frequently are the pauses going to be ? Is he going to be able to take the necessary pauses and sustain a job no matter how short the hours and move forward? These are just some of the questions that loom large for 2019.
So my prayer for today is for continued wisdom provided from the One who knows all things and in whom we live and move and have our being. This is a hard job, I did not sign up for it, but I am doing the best I can at observing and calling attention to the needs of the youngest who cannot do that for himself at present. So may you all be blessed in 2019 continue in prayer or those with mental health issues and their caregivers because it is needed AMEN
So last weekend I ran away, not really but I was away. Away from volunteer duty at the clothes closet my church hosts, away from the cantata and all the uplifting Christmas music, away from our annual Love Feast celebration and even more holiday music, scripture readings and smiling faces. AWAY. It was a much needed away. My best friend from 6th grade invited me to her lake house, and without thought I said yes.
We had a great time, it rained all day and when it wasn’t raining the fog rolled over the lake like the sorrows of my soul and drifted away to be followed by another shower and more fog. It was relaxing without thinking, just knitting , talking, napping , eating.
And now I am back , back to the appointments, the blood draws, the routine of ordering refills, picking up meds and everyday stuff.
In this season I have to admit I am not very Christmasy if there is such a thing, but I am better for having been away and gaining some perspective, some validation, some tears over the what is , and perhaps one day I will be able to dream again of what can be. The youngest is still in conversation about changing his living situation , and is still looking perhaps into a different apartment in the same complex . So MERRY CHRISTMAS and remember Emmanuel, God with us is still with us today even if we some times have to be away to find that He is present wherever we are.
So my prayer for today is that away never calls me to be away for long, that away makes me aware of being back home, that away draws me closer to Emmanuel God with me and you because He truly is in all things, over all things and through all things AMEN
The youngest is still sleeping well and doing well after his recent hospital visit. We are still apartment shopping; hoping to find something affordable, close to his work and on a bus line even if he can’t (right now) ride a bus or even stand at the bus stop without sheer panic setting in. And I am second guessing every step and finding myself in pools of tears for no apparent reason. Hubs and I met with the youngest’s counselor on Friday and again I found myself weeping without reason, even now tears are forming and threaten to drip all over the screen as I type.
I am sure part of the distress is coming from me rehashing this year of ups and downs and pausing to consider if this is really the right path. I am stuck in the knowledge that my son’s brain is fragile; so fragile that missing a night’s sleep can send him down the road of constant wakefulness and hyper anxiety. His brain is so easy to teeter into high anxiety and exacerbation of his fears that it is scary for me to watch. Even scarier knowing that I can only point out observations, make suggestions and pray.
In my devotion today Laura Storey posits that we should be asking God questions- just not the why questions. And I admit I am full of why questions. She says to instead ask the how question- how can this trial be used to glorify God. But in all honesty I still want to know the why. And I am not sure I will ever see as it says in Romans 8:28 “all things work together for the good of those who love Him.” But then maybe I am not meant to, but the hurt is real and the grief remains, deep and weighty , tears flowing. So it’s a good thing that tears are prayers too. The first Sunday of advent is tomorrow, and it is Hope. I am not in a place of hope right now, I see little hope and I am raw and tired of hoping only to find that I have to lower my expectations once again and throw another dream in the trash. Perhaps I should just stop dreaming.
So for today my prayer is that hope returns and that I find a way to dream again for now it is a vague and cloudy thing that is like mist – there but IAM unable to grasp, or hold onto it. But God remains in all things, over all things and through all things. AMEN