Author: MenayO

Diagnosis’

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It’s funny when there’s no one specific diagnosis for your child.  There’s no banner to wave or cause to support. No dinners or fundraisers or awareness day.  Specifically my son.  Thomas was first diagnosed with bipolar disorder shortly before his 6th birthday.  This was the first diagnosis to try and explain the behaviors we were dealing with.  And it made sense at the time (still does for some behaviors).  About 5 years ago we saw a well respected neurologist who in combination with Thomas’ history and test results (MRI, IQ tests, etc…) declared our son as one with “static encephalopathy” which is short for brain damage that won’t get worse nor will it get better. 

I covered these diagnosis in the very early entries of this blog but I don’t expect anyone to remember, if you do I’m impressed :).  Anyway I find myself sometimes envious of those parents with specific diagnosis.  Not envious of the specific diagnosis believe me I don’t think any special needs parent has it easier than any other special needs parent. 

I think I know what I sometimes miss as Thomas’ mother. When he was first diagnosed bipolar I dove into an online support group and found the most wonderful people there. The support I received was second to none and the people were so full of compassion. They had knowledge either learned first hand or they were very well read keeping up on all the latest literature. I even attended a fund raiser with one of my friends (Diane) and we had a ball. These days with Thomas not living home and not being “exactly” bipolar I don’t feel identified with any such group. I still adore and keep in touch with the people I met but we don’t just see our “kids” as just with bipolar, we support each other as parents on a similar journey. As parents period. Parents who have a child with special needs. Overall I think that’s what it should be about. We’re all parents dealing with situations outside the “norm” when raising our children. We all have similar feelings about certain situations. There are many universal emotions we all go through. Although, to play devil’s advocate to myself I do understand certain disorders/diagnosis do have specific issues only another parent or care giver would understand. On the other hand, one of the best conversations I ever had was with a woman I had never met. I was given Jeanette’s phone number so I could speak to another parent who’s child was aggressive to her and they had to place their son in residential care. Jeanette’s son is autistic, but diagnosis didn’t matter one bit. We met and bonded over similar behavior, similar emotions, similar fears. We spent over an hour on the phone talking and even laughing.

These days with Thomas away at school I don’t get many opportunities to talk with other parents like I used to. His school holds events here and there but we’re not always able to go due to the distance and the girls’ schedules. Some days I miss being a part of that “group”.

Discouraged and disconnected.

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I haven’t blogged in a while mainly because I haven’t had much to say.  I’ve been discouraged and disconnected.  Discouraged because my job hunting (along with many others) has been fruitless.  Disconnected and not feeling a part of my life, like it’s just going on without me.

Today I’m relieved to admit I no longer feel discouraged or disconnected.  No, I haven’t found a job but it’s ok.  I’ve stopped measuring my worth as “less than” because I’m still at home.  I’m where God wants me to be right now and no amount of temper tantrums will change that unless it’s what He wants.  I’m still actively job searching but no longer discouraged. When the right job comes along and I know it will, everything will fall into place. It’s just taking a lot longer than I had hoped. But it’s not my plan anyway.

As for feeling disconnected, I didn’t even realize I was disconnected until Tommy pointed it out to me.  I thought I was “ok” not realizing I am missing out on my little world. I wasn’t really enjoying anything either, even thrift shopping believe it or not was not working it’s usual magic.  When you do get disconnected it’s not pleasant and you distance yourself from everything and anything. Hence me not blogging. (This isn’t to say any time I don’t blog I’m feeling that way, sometimes I really don’t have much to say)  I realize (now) this is part of a defense mechanism I have from dealing with the trauma of Thomas being aggressive with me.  I feel like “still??”  This is still freaking affecting me?  My gosh seriously?  But yes it is.  I guess there is no expiration date in dealing with things that are traumatic in your life.

Speaking of Thomas, he will be home this weekend for Mother’s Day.  I’m glad he’ll be here and he’s really looking forward to coming home. 

So I feel like writing…

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Yes I feel like writing but I don’t have a specific topic I’d like to cover.  I notice I get more inspiration when I write about God.  Why is that? I think I’m still on a spiritual high from singing with the choir yesterday, nervousness aside.  I notice Mondays after we sing are usually quite sweet.  I’m still singing the songs from the day before in my head.  Singing His praises.  What could be better than that?  I’m no longer doubting if I am “enough”, it seem once I get things off my chest by writing this blog, the issue seems to resolve itself.  Coincidence?  No, since I don’t believe in coincidences only God’s plan. 

I’m really looking forward to Easter service this year.  It’s the first year I’ll be singing with the choir on Easter Sunday.  In the past few years it was too complicated with the kids and/or Thomas.  The songs that were chosen are just perfect and glorify our Lord in such a wonderful way. 

What else do I have to say?  I’m not sure.  I know I’m in a good place today and the sun is shining and my family is healthy and God loves me.  Jesus died for me.  Today I read Romans 5:8 “…but God shows his love for us in that while we were still sinners, Christ died for us.”  Powerful.  

Isaiah 55:9 spoke volumes to me today.  “For as the heavens are higher than the earth, so are my ways higher that your ways and my thoughts than your thoughts.” 

I have on my phone for a screensaver 2Samuel 22:33 (KJV) “God is my strength and power: and he maketh my way perfect”  Isn’t that just the truth.   

 

 

Enough?

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Today (Sunday) was choir day.  I usually love choir days (at our church we typically sing 2 Sunday/month).  But today I was so nervous.  I have no idea where this nervousness stemmed from.  I am not usually nervous to sing with our choir, I love singing with the choir.  But during these past rehearsals I began wondering if I were good enough.  I loathe this anxiety of mine.  Loathe it. That is where this nervousness stems from.  Once we started singing in front of the church the nervousness went away and I truly enjoyed singing His praises.  Singing to our Lord. Singing with my choir family.  And I remembered how blessed I feel to be a part of this ministry and to be able to worship Him, like this. 

Recently I’ve been wondering why I doubt myself so.  There are times that I wonder if I’m Christian “enough”, but I don’t have an answer for what would make me *more* Christian.  Reading the Bible more?  Praying more?  Witnessing to strangers? Believing more (if that is possible)?  No, I don’t think those are the answers either.  But regardless I feel like there is more I should be doing and I pray consistently for guidance and discernment to know that the path I will be set on will be His path and not any other’s. 

These are my thoughts.  I’m not looking for advice or to be analyzed.  I’m putting this out there as perhaps I’m not alone in my thoughts.  I can’t be the only one wondering if there’s more I should be doing for our God.  And what exactly might that be?  What if I suddenly get an epiphany of direction, will I follow it?  I like to think that yes I will follow His lead because after all His plan is the only one that would be perfect regardless of my or anyone’s thoughts on the matter.  There are days I feel on the precipice of change.  And I get nervous.  Yes, that nervousness again.  However nervous I may feel I do trust him and I know His way will be the perfect way.

 

Guardianship

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Check off one more thing I never thought I’d be doing, filling out paperwork to become our son’s legal guardian. Thomas turns 18 this year.  I dislike dealing with this stuff even though I know it has to be done to protect him.  The fact that he is going to be 18 years old is enough to blow my mind all by itself. 

This isn’t a poor me/pity post.  I’m in awe of where the years went. When I was in the thick of fits and tantrums and running from doctor to specialist trying to get help time seemed so slow…it dragged to be honest.  I remember the first time we had an “official” diagnosis, Thomas was just about 6 years old.  How the heck did I get through 6 years of no answers?   Somehow I did it.

Now today I look at the papers for legal guardianship and I’m amazed that we all made it through the past 18 years.  I know I couldn’t have made it through the past 5 years or so without God in my life.  His hand is on our lives and for that I’m so very grateful.  Without The Lord I know Thomas wouldn’t have been admitted to the school he attends now. The fit is so right. Things don’t just “work out” that way without His control being asserted.   His path and way cannot be denied. 

I know when I stop procrastinating and really sit down with my husband and fill out the guardianship papers we will need help and guidance and I know we’ll get what we need.  

Being Changed

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Lately I find myself reminiscing about how I used to be.  Some of it is the “me” pre-depression, I think I was pretty happy all in all.  In the middle of all that I’ve been changed by the Lord.  Changed in that I don’t like to do certain things, some I never liked at all but would indulge here and there so as to not be a spoil sport.  But last night was kind of a turning point.  My husband and I met old friends for dinner which was great, we hadn’t seen this couple socially in years and it was nice to get together.  After dinner, Tommy and I agreed to go to a sports bar to see another old friend’s band play.  I thought if would be fine but honestly it wasn’t.  Let me just pre face this by saying in the past 10 + years I have not been one to go to bars.  I prefer to go out to dinner with friends and talk normally like human beings, not scream in each other’s ears over the mayhem and loud music of  a bar.   Same goes for loud parties.  Call me old I don’t care.

So we’re at this bar and I rarely drink anymore.  Mainly because of the medication I’m on but I honestly believe this was part of the Lord’s plan as well.  You couldn’t talk to anyone without yelling in their ear plus the place was very crowded.  That part is a plus for our friend’s band.  The band was great, loud but great, they all had a wonderful time playing together and they sounded awesome.  But…this is not for me and I knew it when I agreed to go.  I found myself wondering when this happened.  That I would be at a bar pretty unhappy to be there watching everyone drink around me at times reminiscing to when I was ok with it.  When I would have a few drinks and chat, make small talk have a few laughs.  Really try and have a good time and I would have a good time.  But last night I just couldn’t.  I wouldn’t drink for fear of the alcohol making me want to go to sleep, I wouldn’t make small talk because it was just too difficult over all the noise.  I felt so changed, so very different from everyone around me.  I kept thinking of how I used to be.  I was different.  My comfort zone was different. 

I’m not a “better” person these days.  Just a different person.  I don’t care for crowds, and being where all the people are, just give me a table for two and we’re cool.  I might have one drink.  But these days I find it’s hit or miss if I enjoy that drink or the way it makes me feel.   

 

I felt so very changed last night.

Wandering

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My thoughts that is, they’re wandering as most of us would probably admit to.  I wander mostly to what life would be like if I worked a full time job outside the house.  Would things be that hectic?  Would it alleviate my boredom?  Hard to say and/or predict.  Don’t get me wrong I’m thankful my husband has been able to provide for us that I have been able to stay home but dang man, this staying at home mom thing seems to get more difficult as the kids get older.  In my personal experience, I find that I’m taken for granted.  My girls *know* when I’m home and that they can call to come home from school (this past time my daughter was NOT all that ill that she had to come home, I only discovered this only after I picked her up).  Another daughter asked to be picked up because she was not feeling well but well enough to attend some classes but not well enough to take the bus home~again information I discovered after I did the driving and  picking up of said daughter. 

I know my husband appreciates me as I appreciate him.  I don’t want either one of us to take each other for granted and so far we’ve been “ok” in that category.  My kids on the other hand…after last weeks picking up – a- pa-looza.  I made the decision that just because I am “home” doesn’t mean I have to pick everyone up just because they want me to.  I think when you stay at home long enough you start to feel “well that’s what I’m here for”, but honestly no it’s not.  I’m here at this time in everyone’s life to ensure the house runs smoothly, not to pick up kids that aren’t even sick (like really sick you all know what I mean). 

So as a result of being taken for granted my thoughts wander. Wander about working full time, part time, any time that wouldn’t take away from when I have to be here. Not an easy schedule to work around but those are my requirements. I won’t make excuses for why I’m still home. Things with Thomas kept me here at this station longer than I thought I would be.

So now my thoughts wander and I wonder what’s next?

Prayer meeting

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I attended my first prayer meeting ever at my church this past Friday night.  I wasn’t sure if I was going to go at first but I swear the Holy Spirit works through my children as it was my oldest daughter who encouraged me to go.  I arrived a few minutes early and was fortunate enough to find parking.  This next part was odd.  When I was walking up the stairs to enter the church I swear I felt a sinking feeling in my stomach telling me to leave.  Like a feeling of dread.  That I shouldn’t go.  I wasn’t apprehensive about going, I had made up my mind earlier in the day while emailing my friend about the meeting.  We were to meet there.  I never had a feeling like that before and it made me very uneasy.  I still continued on and entered the church.  The minute I did that the feeling left as soon as it came on.  Say what you will but I believe the enemy exists and I believe it was him trying to discourage me from attending the prayer meeting. 

I had the pleasure of sitting with 3 other strong Christian women along with my friend (who is also a strong Christian as well as a wonderful friend).  I feel blessed to have been surrounded by such women.  The prayer meeting was powerful.  Powerful.  We prayed for ourselves.  The elders and Pastors anointed those who were ill with oil and they were prayed over.   We prayed for people sitting next to us, we prayed for our youth and their parents, we prayed for our children and the children’s ministry and the children’s ministry leaders.  We prayed for our Pastor and his family.  It lasted over 2 hours and people were still praying and the Pastor invited everyone who wanted to stay that they were welcome. I left after being prayed over at the alter. It was amazing.

The people leading us in prayer were so eloquent and moved by the Spirit. Their words were perfect and inspiring to the soul. I wish I could pray out loud and so be Spirit led. I’m more of a stoic/quiet pray-er. I know God hears me. I believe it is quite the gift to be able to pray out loud for a group of people, many of whom you don’t know personally. And I believe it’s even more of a gift when your words touch the very heart and soul of someone listening. It’s the gift of the Spirit leading you to relay a much needed message to someone you don’t even know.

Prayer is so powerful.

I’m not going to be dropped on my head.

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I read on a friend’s facebook post today, “God didn’t bring you this far to drop you on your head”.  That statement made me literally stop in my tracks.  The post was not directed towards me but rather a friend of this friend but in my heart I know I was meant to see that.  How could anymore be more true right now, to me anyway.  I’ve been having a hard time lately trying endlessly it seems to figure out what exactly I’m here for.  This being a SAHM gig is getting stale to me and I feel the need to *do* something but what that something is?  I’ve been wondering have I been forgotten by God? Maybe he’s forgotten about his plan for me?  A silly thought yes I know.  Then after reading my friend’s facebook post I realized that God hasn’t forgotten me, he’s brought me this far hasn’t he?  Why would he then drop me on my head?  He wouldn’t.  His love is far greater than that.

It never ceases to amaze me how great and awesome our God is. He’ll accept our anger and still cover us with His grace, He’ll always be sovereign even though we accuse Him of being unfair. He is and always will be our God and I give thanks to Him that He will never drop me on my head after bringing me as far as he has brought me. To His glory may all things point. He will never leave us or forsake us. I need to write these things down as a reminder to myself and maybe someone else needs to read it as well.

I will continue to pray and praise Him even in the darkness He will shine His light and I know that He is near.

Acclimated

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Acclimated that is what my son has become to his school.  Or should I say his “home” now.  It’s odd to think of your child calling somewhere other than your home *their* home.  I’m not complaining and surprisingly not upset about it.  But my son is most likely more comfortable at his school/home than here where his family lives.  I noticed this past week that when Thomas is asking to come here, he doesn’t ask to “come home” he asks for “a visit”.  I respond in the way he asks, that yes he can have a visit.  I notice I don’t say he’s “coming home” either. 

So this is probably item number 856 of things you should know as a parent of a special needs child who needs residential placement.  Some days I wish I journaled the first time Thomas was in residential.  There are many instances that stand out bright and unmistakable but I wonder what didn’t make it in the memory banks.  I know we felt very empty when he went the first time.  This time it wasn’t emptiness.  Relief was there as well as disbelief and I know I was glad to be able to feel safe in my own home and know Thomas was in a safe place as well.  The first time he was so young but back then I wasn’t worried about his age as much as his behavior.  We just wanted him “fixed”, make him well that he can come home again.  And they did. 

This time, residential is not to fix Thomas it’s permanent, we cannot provide for him in our home.  He isn’t safe to live here anymore.  Heavy huh?  Again, I’m ok with this.  I don’t like it, not one bit.  I’m still his mother.  But things are what they are. 

So I guess one could say we are acclimated to Thomas in residential too.  We’ve made our home very comfortable for “us” who live here at this home. We’ve shifted and adjusted and have become acclimated to one of our family living elsewhere.  Almost dare I say “normal”?  Or whatever normal is.  One of my favorite people used to say, “Normal is just a setting on a dryer” and I would laugh.  But it’s true.