So we are starting again!!! Lol, isn’t that just like life to start over and over. The youngest met with his peer counselor person this week for the second time and hopefully this will help him move forward. I asked him what they talked about at their time when I picked him up and he told me “setting goals” . Wow, music to this tired momma’s ears. I have been speaking to goals for a long time and sometimes it was falling on deaf ears, but perhaps now when a new person helping goals can be set and accomplished. And perhaps my goals were just too small, because some days were like, just get a shower, ok, not a shower, how about a wash, ok, not a wash how about letting me wash your hair, and finally hair washed . But perhaps that was the way it had to be at that time. Continue reading
Since the youngest developmental years were robbed by his psychosis, we have been playing catch up. And it is a hard task, for while he has the disorder schizoaffective, we his parents, have had to witness the effects/affects of what this disease has done. It has affected my parenting greatly and perhaps not for the better. One of the things I believe is that parents are to guard, guide and direct their children so that they become productive individuals, honoring God and people. Ahhh, but when faced with this disorder, one takes the guardianship piece and makes it priority, unfortunately and we lose the piece of guiding and directing. How can you give that extra push when anxiety reigns and shows up in the simple things like riding in a car, causing panic attacks. How do you judge when to push and when to be still??
So anyway this week we pushed, we arranged for the youngest to help one of the deacons at church paint one of the classrooms. And he did it, yes there were some deep sighs and a few moans and probably an eye roll or two, but he went and completed the task. AND HE WAS VERY PROUD OF THE JOB!! Cue the parade!!
We also pushed again today when at family, he was introduced to a peer counselor. Someone who has been through similar things with psychosis and is now working and living on his own at a facility which the youngest has hopes of going to some day in the future, tiny little steps , but good ones .
so today is a day of thanksgiving, for those who reach out and take the risk of working with the youngest whether he is volunteering at painting, stepping outside and making new connections. Praise to the Lord, El-shaddai, the all-sufficient one who remaining with us daily, allows us to lament in His ear and welcomes us no matter what our condition, just as we are, tired, old, sad, happy, tearful any way we want to seek His presence, He remains present, near offering comfort, though maybe no answers because His grace remains sufficient, His Love perfect,His grace unending. My prayer is that I never forget these even on the worst days, and that I remain thankful on the better days. AMEN
So this week and last have been hard on me and perhaps I am over thinking things. There is an art to acceptance, but there is also an act of giving up. And how do you discern the difference?? this is what I have been pondering this week and last. For me it is hard to accept that I now have to drive 17 miles to get the youngest to his appointments because his anxiety is at the point that causes panic attacks when we are on major roads with traffic. And even when we take the longer, back way which has less traffic, I look in the rear view mirror and see him clutching the headrest in front of him for dear life, white knuckling the ride, this is not a peaceful country excursion, no, it is quite hard on him and of course on me also.
I wonder if this is as good as it gets and should I accept it, or should I keep on keeping on hoping for improvement , or should I give up and say ok perhaps this is it. The argument goes around and around in my head and no answers come forth. And I also think that I am not helping by giving in and taking the back, longer way, wouldn’t it be better to have the youngest “tough it out” but then would the anxiety become so high we could not even go out and yes this has happened before so it does stick in my mind a possibility.
I have not mastered this art of acceptance, nor have I given up in despair though there are days when I want to sleep all day and deal with everything tomorrow or never, neither of which is acceptable. And so it goes. The struggle is real, the possibilities small and large at the same time. Confusion abounds, discernment elusive and fleeting.
So my prayer today is for faith in the sovereign God who through all this mess and confusion , this dreadful schizoaffective disorder, remains immutable, remains in all things, through all things and over all things, and for me to remain under His will and in His care AMEN
I was just reading about Laura Story and her Husband Martin, and their story of his brain tumor and the consequences of surgeries, and she said ” what choice do we have, we will always be in the midst of this battle with these consequences, and we have to do it every day, and boy she hit the nail on the head.
It has been two weeks since the youngest came down and said “my voices are back” and I feel like I have been stuck in mud, thick gooey, quicksand like mud. We are still moving forward and we have new hope for a peer companion to come alongside with the youngest and help in the next month or so which is a positive strong thing to praise the Lord for such programs. But the reality is that we too, will always be battling this disease of schizoaffective disorder, and there will be blips, and muddy slow as snail paced weeks when the progress seems oh so small.
This is the time when I lean into the grace of God, who gives endurance when all I want to do is to curl up in bed and have a week-long cry. This is the time of a sacred sorrow, a deep lament like the psalmist does in Psalm 13. I can feel the deep distress of him who wrote ” How long, Lord, How long are you going to turn your face from me?” It is a deep cry , gut wrenching call, seeking the most high God in moments of weariness and distress. And yet it is not without hope, for the one who calls out also acknowledges the sovereign Lord, in whom he places his trust at the end of this lament. Someone recommended the book A Sacred Sorrow by Michael Card, and I am thankful I chose to get this book. It is a beautiful work about sorrow, because we all have sorrow at some point in our lives and rather than rushing through it, perhaps we need to sit with our sorrow, cry out to God and lament like those of old, Job, David, Jeremiah and even Jesus. Perhaps we need to bring back this skill of weeping before God, bearing our souls and being comforted by the one who is Comfort. It is hard work this lamenting, and it is sacred work.
So for today I am thankful for those who point us to resources whether it is a book or personal experience. Thankful we have a High Priest who understands our laments, and for the Spirit who intercedes when all we can do is curl up and cry for loss of words. Thankful for those who stop and say prayers for peace and comfort in times of lament and thankful for the Son who bore the cross so we can come freely to the throne. AMEN
So one week ago the youngest came down and stated that his voices had returned. And today one week later they are gone. Blip, they are here, blip they are gone. After getting blood work done, we got the results today, and his level was low on the one drug which sedated these voices, even from one month ago a big dip, so blip the voices returned.
I have to admit it was scary, as a nurse my first thought was “on no, a medication breakthrough, this is not good” , but in thinking about what had changed and I could think of nothing that we had or had not done that would precipitate a drop. And I do not know if this will last or if once again the voices will return.
The amazing thing is we changed nothing but the voices have gone. Today I am giving full credit to God because all those prayer warriors who I sent out emails, texts, and just plain asked said prayers. Some are people I do not personally know, they lifted my family up in prayer after reading my last blog or they heard from a friend, or in church , on the email list serve and they paused and said a simple prayer. AND GOD PAUSED, BOWED DOWN AND LISTENED. 1 Peter 3:12 states “for the eyes of the Lord are on the righteous and his ears are attentive to their prayer” and this is so very true for me tonight. I feel that power of those precious prayers from all those who lifted the youngest up,my family and me up in your prayers.
I know this disease is awful, horrible, debilitating on the worst days, but on days like today, I feel victory. We had a blip, we faced it and we prayed. It did not take us to a place of fear, a place of not moving forward, no we slowed down our stride but we did not quit and this is victory, small but now the youngest knows he can do this and if the voices return at some other time, he will be able to look back on this blip and remember it is a blip, not a mountain, not a deep abyss just a blip.
so today my prayer is once again a prayer of thanksgiving, for prayer warriors seen and unseen, but mostly for the Lord who pauses and is attentive to our prayers. It reminds me of the Psalm 8:4 ” what is man that You are mindful of him, and the son of man that you care for him” . Indeed pause and consider how wide and long and high and deep is the love of Christ (Ephesians 3:18). We are Easter people and we are dearly loved even on the blip days, so do not fear , for IAM with you , do not be dismayed, for IAM your God, I will strengthen you and help you and uphold you in my righteous right hand (Isaiah 41:10) AMEN
So this morning while I was sipping my coffee, the youngest comes down and in a not so calm voice says “my voices are back ” , and the look of fear in his eyes. So as calmly as I could I asked ” what are they saying” . In the past these voices have said, demanded, coajoled and screamed so good question. The youngest answered ” Welcome, welcome”. So I said to mayself well that’s not so bad, and aloud I said” ok well, we need to call and see if we can meet with the doctor today.” And so the day began.
You just never need to hold on to plans too tightly, because they can always change. And you can either be rigid and fight the change or you can be flexible and go with the flow, make a different plan and still move forward. As the Randy Travis song says, “nothing breaks if it can bend” and though I am older my agility seems to be getting a workout these days. This morning as I got up my mind prayed out ” this is the day the Lord has made and I am placed in it, guard, guide and direct my paths today. And I got on my t-shirt which has “fear not” written on it in bright yellow letters. My plan was to get the youngest to the lab for his monthly blood draw, pick up my finished tax forms and get new phones for us which we had ordered but had not come and I had decided to go to the phone store, interact with the staff and get that done. Well the blood got drawn as per protocol, after the doctor visit and with additional tubes to be drawn, the phones are here and I am trying to figure mine out (technology challenged in my own way), but the taxes did not get picked up and I was not able to have fellowship with some of the ladies at church, but all in all a successful day. And the voices diminished, to a mumbling noise, not the shouting voices of the morning. Perhaps this is when we sigh loudly, take multiple deep breathes, and acknowledge that we have no control, that the youngest may always be plagued by these voices but hopefully not so as to interfere with his activities of daily living. It is a puzzlement that confounds , frustrates, and produces anxiety, it’s irrationality completes throws you off guard. For me , I am profoundly blessed as I have prayer warriors so when something odd occurs, I send out texts, emails, calls and ask for prayers for peace. This is all I can do and I believe it helps me stay calm and dissipates the anxiety, because if I am calm, then the youngest remains calm and we both move through the day a bit easier,
So my prayer for today is thanks to all those prayer warriors who have sent up prayers and do so at a moments notice and just stop to pray to the God who remains in, over and through ALL things. Amen
So today is a day for learning Greek, no not the whole “it’s all Greek to me” kind of thing, but just one word. Egeiro, get up, arise, move. Translated in the New Testament as one or all of those things. This week while reading my 40 days of decrease by Alicia Britt Chloe , I came across this word egeiro; to make a transition from one place to the next, and indeed there always seems to be some kind of transition here. These past few weeks have been hard because the youngest has slipped back from his forward progress into a cocoon mode going back to the familiar. During our family session without the youngest present , we came upon the possibility that perhaps this was going to be as good as it gets. Or not. One can only wait and see. This is part of the long road, the path which has been set in place by the Lord of all, who is in all things, over all things, and through all things. And I have been placed here, for a purpose, on purpose. I have also been reading Esther and she also was placed in a particular moment in time. She embraced her moment and was written up in history. But I am not so sure of embracing this moment for I find myself being drawn from extreme anger to extreme sadness and complete frozen in time non-movement. It all seems too much on some days. I struggle with the concept of “come follow me” with my nature being “are we there yet”. And the not knowing what the end point is, if there truly is one at all. And while doing all these things were are to be joyful in trials and patient in affliction – really?!?!? It would make more sense to me if that verse had said we are to learn joy in trials, and to learn patience in affliction, but that’s just me. And these trials make you think, since the trials are to refine you like gold (Malachi 3:3) really how deep and wide and long is your own sin nature since these trials are long and deep and wide. Others seem to have it easier but perhaps they are just better at hiding the angst. How are we as Christians, to learn and grow if we do not speak of our trials, but instead go to church and show up with our polished facades and halos brightly shining. Where are the tears, the anguish, the sorrows?? And how can we receive comfort, direction, encouragement if we just hold all our junk inside, after all we are to bear one another’s burdens (Galatians 6:2). Perhaps if we learn to be vulnerable with others, we shall also learn to be vulnerable before God, after all He is not surprised by anything, no-thing, nothing surprises God!!!!!
So for today my prayer is that I have patience, endurance, I am not to joy at the present and may never be but I confess my unbelief daily, expectantly await the next miracle which is just around bend which only God can see because the road is long.
So this is the Lenten season and it seems that people are fasting all sorts of things like chocolate or coffee. But I have been reading about fasting and today for my fast I am to fast premature resolution. Deep sigh. Because these last few weeks have been difficult.
the youngest has slipped back into a cocoon mode of staying at home and when he does get in the car there are panic attacks. Not sure why. Now what does one have to do with the other. Well, I can be resolved to moving forward every day, but that resolution goes down the tubes when the panic attacks hit, and I have to step back one or two or a dozen steps and then start the forward motion again.
I can resolve to be patient, but again my impatience shows when I am awakened in the early morning with” I have a migraine and can’t go to therapy” like happened this morning. That raw spot that longs to be healed has the scab torn off yet again when the therapist says things like” Y’all , your son is seriously sick, we have his psychotic symptoms under control, but his anxiety is off the charts and I don’t know how he will survive outside you home, but we are working on it”. Yes that was said and it was like a sucker punch to the gut, and my “premature resolution ” of the youngest getting stronger and moving forward suddenly seems light years away. And I think at my age that my frailty is showing when hubby says ” you are old” well he hasn’t exactly gotten younger ” but I don’t feel old says he, “you look old!” And yes I am old and these thing sent to try me don’t make it easier. Premature resolution reminds me that we can not and should not think that over is over, because God works in God’s time and always in His time. But it does make you pause and consider how deep and wide your own sin nature is when all these trials are meant to polish you so that you shall be like gold; mine must be way deep cause I have been being polished for a long time and I am tired and sore. Knowing that He who began a good work in you, will continue that work is another verse that comes to mind along with the question “are we done yet? ” and again light years loom large at the scope of things.
so for today my prayer is for no premature resolutions seeping into my brain, that I will remain in patience and endurance. That the grace of God will somehow flow in me and extend to others even on the hard days when it is way easier to cry than it is to smile. For migraines to disappear, for anxiety to dissipate, for peace to reign over anger and impatience amen
Nobody likes change but throughout our lives we are in an almost constant state of change and transition, so it is a conundrum that we dislike it so much. Funny how you just get used to one way of doing things and they change. Sometimes the transitions are quick and easy, and at other times they are long, drawn out occasions with lots of starts and stops along the way.
We are on a season of transition with the youngest. And for the most part it’s a good thing. He is stable on his meds, stable in his environment and so the therapist and psychiatrist, have been weaning him from his once a week/once a month visits to once every other week/once every two months visits. Which is good and frees some space for the usual household events to take place without fiddling with the calendar and making adjustments.
BUT it has also caused some anxiety to start freefloating around the room and it seems a bit uncomfortable. The youngest knows he needs to press forward, but the anxiety holds him back. He recently received encouragement to seek vocational rehab and work skills training. We are encouraging him to take this next step before going to a community which supports those with serious mental illnesses and helps with job placement and housing, but he seems disinclined due to the anxiety. This is one of those long, stop and start transition deals.
So today I am thankful that I have had practice at the stops and starts of life, thankful that though the road is long I am still on it,thankful that the Lord is still present daily and that I can call upon Him because He is not surprised by any event, or circumstance that occurs. I repeat my verse of the year today this new light of transitions and it brings peace, hope and joy for my weary traveling (thought not leaving home) soul. Isaiah 26:3 says” I will trust the Lord forever, for the Lord, the Lord God is the rock eternal” and I am assured, reassured blessed with His comforting presence. Amen
Today was family meeting day, where our little triad goes and sort of has a check in with the therapist, to see how things are going what changes , what successes, what setbacks etc. are discussed. So far all has been going fairly well, or so I thought and hoped. But today on the way to the office the youngest had a panic attack, accompanied by shaking and breathing problems and short sharp answers to “are you ok?” The response was “NO” . So I was reminded that the youngest has a serious mental health problem, which no matter how much improvement we have, it still exists! It made me send up a quick prayer for peace and help right then and as I was driving the car in traffic I couldn’t do much more than that. It caught the hubby off guard also and his response was” oh for heaven’s sake” which I am sure he regretted the minute it left his mouth and he followed with ” just take some slow deep breaths and here you can hold my hand”, which was refused. Being caught off guard is hard and while I could not just stop and cry which is what I wanted to do , I could say a prayer for peace and help , maybe that was what was needed. The youngest got himself together, but was still shaken when we got to the office, so I slipped my arm in his and gave him a little squeeze , just to let him know I was there, no words said, but I could feel his step relax and he seemed better. We did discuss the reactions at session and we all agreed that it was the unexpected nature of the anxiety and panic which caught us all off guard.
That is what it is like with schizoaffective disorder, you can do something over and over again like getting in the car and going to a session and Boom, anxiety sets in and then panic and there you go!!
Today I am thankful for the presence of the sovereign Lord, who hears every prayer the quick ones and the long ones, as well as the short, desperate ones. And I am assured He hears them all, captures the tears in bottles and remains present. I long for the day when I don’t have to think about such things as panic attacks in traffic , it probably won’t happen, but the sovereign Lord has and does provide miracles so I will await with hopeful expectation, eyes and ears alert, and will still be caught off guard!!! But that is one thing about God – HE is never caught off guard !!