Wednesday, September 2, 2015

How we have been doing since my mother in law's passing.

I realized that I haven't posted about how we have been doing since my mother in law passed away on 7/15.

She had been sick since May and pretty much continuously in the hospital.  She was put on hospice on 7/8/2015 back at the nursing home where she had lived for 5 years.  She passed away the evening of 7/15/2015.  My mother in law had been very decided that she did not want a funeral, but did allow a Memorial Service.  She wanted to be cremated.  Our Senior Pastor came the night she passed away and spent some time with us (just my husband and I - it was after the kids went to bed) praying, remembering, and singing.  My husband had sat with his mother most of the day (I had been there in the morning with him) and he had left for a short time when she passed.  He had sung How Great Thou Art to her.  While she had been pretty much unresponsive for days he felt that she had heard him singing to her and tried to respond.  He had struggled that whole week with wondering if he should be there when she passed or not, and thus not sure if he should ever leave her side.  In hind sight he is glad that the decision was taken from him as he had put off all day the errand he had to run and finally left at 8:30 to get it done - and she passed away shortly after.

The nurses and staff were wonderful and spent time talking with us about how she was.  She was a loved and appreciated resident as she was usually very patient and non-demanding.   I sure hope that I can be that way...but I feel that I very much fall short of those descriptions!  My husband handled it all very well.

He did such a great job of caring for her over the past 6 years since she moved down here to be near us.  He took care of all of her medical appointments, went with her to most of her medical appointments, advocated for her often, took care of her financial needs, paperwork, etc.  He visited her as often as a father of 6 kids still at home could visit her.  He was an exceptional son to her.

We marveled at the perfect timing of her passing.  We are so busy all of the time and God took her at a time that, when we look back, we smile and remember that He has perfect timing.  He didn't have her die on M or T when I worked long days and my husband was at home watching the kids most of the time (he did go the 6 blocks to see her several times, but had to be home with kids too).  I had offered to stay home those days but he reminded me, "we have a wedding to pay for!!"  Thursday we had to leave for our daughter's college and to move her in to her house.  Wednesday he spent essentially the entire day with his mother, and she passed away just before 9 p.m.  God is good:)

The kids went to camp the following week so we held the Memorial Service 14 days after she passed away. My husband really went back and forth if he was going to do it at all and decided to go forward with it.  Our Associate Pastor did a beautiful job.  It was very emotional and I was thankful for our friends who came around our kids offering support and physical comfort during the service while I tried to comfort my husband.  We were so touched by those who came that day to support my husband.  It was very touching and we won't forget those who have loved us during this time (even though we have yet to send out any thank you cards:(

The day after that we drove 8 hours to her home town (stopping through at our daughter's house to move more items in).  My husband got to spend the evening with his dearest cousin that he grew up with and was like a brother to.  I kept the kids occupied in the pool.  Friday morning (after practically no sleep due to Grace and JJ) her graveside service was at 11 and my husband did the talking.  He was very nervous as talking in front of people usually results in my husband become extremely emotional and unable to talk.  Faith vomited 40 minutes before the service and I thought "what else can possibly happen?!?!?"  Thankfully she did not get sick again and no one else got sick for the drive home!

We got to the service on time.   My husband enjoyed catching up with his family members, many of whom I have never met since we do not have much contact with either side of his family.  I am not sure how many showed up but I think it was around 50 of us standing  around the grave site.  Perhaps a few more.

JJ had enjoyed getting his own water before the service and I had warned him that he would have to go potty if he kept doing that.  He argued with me and kept drinking.  So...5 minutes before the service, in the middle of a large cemetery, he announces he has to go potty.  One of my mother in law's 7 siblings overheard him and laughed - telling me to take him behind a shed a ways away.  We ended up "behind the shed"...twice;)

My husband got the service started and the girls were emotional.  My husband got emotional.  I went to stand behind him rubbing his back and praying for him, and Beautiful took over comforting the girls.  I didn't know how his family would respond to my standing there with my husband, but when I whispered to my husband if he wanted me to leave he whispered back, "stay, it is working."  So, I stayed:)

He did a precious job and honored his mother well.  There had been rumors of a family member showing up that was not welcome, and we were so very thankful that he did not show up.  Thus, it was a sweet time of my husband's family remembering my mother in law and them expressing their appreciation for my husband for all he did for her. It was a healing time.

Afterwards we went to a restaurant to eat.  Then I took the kids to a park to burn energy while my husband kept visiting with his family.  We ran some 'races' and had fun until he came.  We drove home and got back before midnight.  Unfortunately the last 90 minutes in the van involved Grace screaming vile things and refusing to calm down...but at least it was the very end of the trip.  She was way to over stimulated and out of control.  She was feeling what the rest of us were feeling - exhausted, frustrated with 16 hours in the van in 2 days, and emotional about her grandma.

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Since then we have been doing pretty well.  There are times when I wake up and mentally assess what the day will look like.  I will think, "I need to do keep the kids occupied with ___________ so that my husband has time to go see his mom."  Then I remember that that won't be happening.  I had not realized just how much time he spent going out there, or how much of our mental energy was spent thinking about her, how to take care of her "business," etc.  It has just been reality for the past 6 years.  It is an odd weight that we did not mind bearing, but did not realize how heavy the weight was.  She was never a burden, but the realities of caring for her were significant.

My husband often thinks of her, of course.  We took Buddy to a movie one night and after we left he said, "I was just thinking that I was excited to go tell Mom about the movie...then I remembered."

He is busy taking care of her final paperwork issues.  He always took care of all of those things for her.  I was not part of any of it.  I appreciated that he took all of that on his shoulders.

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Probably the most significant change has been with my husband.  Rather than him being consumed with grief for her, he really believes that she is now in a better place.  While he misses her, he genuinely believes she is no longer in pain and is with her Savior, and that brings him much peace and comfort.

His eyes sparkle again.  I had forgotten that.  There is actual joy and humor in them and not just weariness.  It is obvious that he is not feeling the weight of the world on his shoulders as much.  Even with us marrying off our oldest daughter 8 days after burying his mother and the reality of the stress of the rest of our stressful life he is less stressed than he has been for...years...many years.  I know that most of that is due to the faithful prayers of our church and friends.  There is absolutely no way that we could have survived this summer, much less thrived, without the prayer support of so many people.

There is no greater testimony of how much stress has affected him than with his glucose numbers.  He was diagnosed with Type II Diabetes on 12/12/12.  We have spent thousands of dollars on 3 different holistic programs to keep him from going on insulin - focusing on diet, exercise, and supplements.  Within a week of his mother passing his glucose numbers were in the normal range 75% of the time.  Without supplements. He even went to "testing" it a bit by having some wedding cake here or there or another sugary treat and there has been no increase in his numbers.  The other 25% of the time the numbers are still lower than what his low numbers were before.  He is feeling better.  It is good:)  He is doing well!

That is NOT to say that there isn't a fair amount of stress in our lives.  Yesterday I was 9 hours into a long day of work and called to quick touch base with my husband.  I asked how things were going and he responded in a very weary and exasperated voice, "do you want me to tell you the truth or lie?"  I said, "well, since I still have over 4 hours left of work...lie."  :)  When I did get home at 9:30 he had the Middles in bed and was making Grace's school lunch in the kitchen while listening to "Oh Glorious Day" on his ipod.  He gave me one of the ear buds and we just slow danced in the kitchen while soaking in the words to that song.  Life is still plenty stressful, but we also take advantage of moments like that to keep us focused on God, be attentive and appreciative of the hard roles each of us have in this family, and treasuring the moments of comfort we can get from each other as time allows:)

Tuesday, August 25, 2015

JJ Update: August 2015

It has been so long since I have blogged that I have all of these topics rolling around in my head.  I will try to tackle them one by one with the shortest first:)

JJ finished music therapy the beginning of August.  He seemed to enjoy it and likes music a lot.  He still wouldn't interact with the other kids in the class and even when they do the story time and the kids move 4 feet into the center of the circle he wouldn't let me remain at the wall - I had to be right there next to him touching him for him to feel safe.

But, there is a new speech therapist working with him (an associate of Ms. Erin) and JJ has been doing GREAT with her.  He isn't having any problems with interacting with her, responding to her, talking to her, doing what she asks him to do, etc.  He is finally feeling safe enough in that environment to do speech therapy like every other kid would do it.  She has added some occupational therapy components on recommendation by the OT who is also in the practice.

My work schedule has increased, so in an attempt to keep working only 2 days a week (except 2 weeks ago, and this week, and next week...oh who am I kidding) my husband takes him to Tuesday morning therapy now.  I miss taking him as I know that I follow through more during the week with the current therapy being worked on than my husband does, but for this season of life this is reality.  The new SPL is very pleased with JJ's progress.

Myself, I see his speech improving stalling a bit.  He still has to be reminded for the /f/ sound.  He doesn't spontaneously enunciate it properly (it is always a /s/ sound).  But as soon as I say "try again" he is able to identify in his own mind the word he mispronounced and do it correctly.  The SPL assures me that this is huge and should be encouraging to me.  He still struggles mightily with being able to sound out /f/ in the middle of a word, and some struggle at the end of a word.

While I don't see much improvement, Sunday we saw a friend we haven't talked with for months and she was quite shocked with his volume of speech, and said she could mostly understand him (even if some of that came from context).  So, that was encouraging.

I was also encouraged that on Sunday we attended a home school kick off picnic.  There were A LOT of people there.  I would hate to overestimate but I think there were possibly 130+ adults and kids there.  It felt like there were 100 kids alone.  Anyway, JJ took off and played with kids that I know he doesn't know.  With everything in the past year we haven't seen this group for a year, and at least 1/2 of the group was new.  Thus, these were strangers to JJ.  Yet, he ran off with them and while he mostly stood off to the side and watched the chaos of groups of kids playing, he did find some to play with and didn't require a sibling to be near him.  It was the best social improvement I have seen yet.

He is also feeling much safer at church.  Which means that he runs from me and won't stay put.  I guess that is progress in one way, but it is sure frustrating!

He loves to be read to at night.  He still needs me to lay with him at night.  Every single night he says to me, "will you sleep with me Mommy?"  Like something has changed in the past 5 years! But it is sweet that he always asks and doesn't take it for granted.  Then every night while we are laying there he says to me, "Mommy I miss you at work Mommy."  Bedtime is the one time he gets my undivided attention.  I love snuggling with him.  He has taken up a preference for having his back scratched.  I also see that as progress as he used to have such sensory issues and back rubbing or scratching was very uncomfortable for him.

Oh, he had a birthday this month too!  It was the week after Beautiful's wedding.  He was sooo impatient for his birthday.  They got back from their honeymoon and gift opening day happened to fall on his birthday.  Thus, the in-laws were here for gift opening...and we had left over wedding cake as his birthday cake lol!  It will have been the best decorated birthday cake he ever got lol!

He is now 5.  I am starting on some preschool activities with him.  He has so little interest that I have to keep it low key or he refuses to do anything.  He is starting to like to use a pen.  Thus, I have him use a dry erase marker tracing numbers and letters.  He likes to do that.  He still holds the pen extremely awkwardly and it shocks me that he can trace so well with that grip.  He refuses to hold it any differently.  I have asked the SPL what to do about that since there is an OT in their office she can ask.  They said to hold off for now.  He used to just do jagged lines closely together...but in the past 2 months he is actually drawing circles/bodies for animals/people!!!!!!!!!  I am very happy about that progression.

I am shocked with his cleverness.  The kid doesn't forget anything that he hears and he can argue a point so logically that I am left stunned that I have been outsmarted by a 5 year old.  One that comes to mind was over the weekend I was telling James and Faith to clean up their clothes.  Usually JJ is in there and creates a mess of what they are trying to clean so I asked him to leave.  He responded with, "this is my room too, why do I have to leave?"  Obviously the correct answer is "because I asked you to leave so you don't hinder your sibling's cleaning efforts" but his use of logic astounds me and usually stops me short.  If I give him one answer now, I can be guaranteed that he will remember it and use it to try to win an argument with me in the future if I stray even a little bit.  I am used to Grace who just screams mean things at me that aren't based in this universe much less logic, or Superman and Faith who just mutter under their breath but do it.  So, it takes me aback to actually have to come up with logical answers.  It is like raising Buddy all over again lol!  Oh, wait, Buddy still argues using logic with me!

This got much longer than I anticipated.  Off to another 12 hour day of work, and looking forward snuggles at the end of the day with this little guy who misses me when I am gone and continues to give me much enjoyment:)


Sunday, August 23, 2015

One Of Those Sermons That is Written for Me

Have you ever gone to church and felt that the service was designed with you in mind?  That was my experience today.

This morning started out very poorly when I ended up in a very ugly confrontation with Grace.  Mornings and bedtime are her worst time of day due to medication not being in her system.  This morning was terrible.  I am trying to think through all of the "whys" this morning was worse than usual.  It is always worse when we are on a time schedule.  Usually when she acts the way she did this morning I would have just kept my mouth shut, taken her food and put it in her bedroom where she was need to eat alone and not come out until she was calm.  But, it is Sunday and I have to teach Sunday School so that wasn't an option.  Thus, I did the absolutely wrong thing...I engaged in her argument with her.  Arguing with Grace is like arguing with Hitler.  There is just no way possible that any logic or any positive is going to come out of it.  But foolishly I did it anyway.  I got myself so worked up I was ready to make phone calls to have her placed elsewhere.

Thus, by the time Sunday School was to start she was in her room, my husband was left home to supervise her, and I was off to teach 4/5 year old Sunday School by myself (normally my husband helps me teach).  And I was not in any frame of mind to teach Sunday School.

I taught Sunday School and felt like I got the material covered well.  However, there is a difference between teaching material and teaching in the Spirit.  The latter was not happening.

So, by the time I got to the church service I was even more angry.  I was upset with Grace for her behavior.  I was upset with myself that I allowed her to bait me, again. I was feeling worthless as a Sunday School teacher and struggling with the decision if I should even continue to try to teach or not.  That warring with my reality that if I don't teach JJ won't attend.  Essentially I was feeling utterly hopeless, helpless, and angry.

In church I have to sit next to Grace and put her on the end of a pew so that she cannot disturb the other kids.  This is also the same reason that we have put a small table at the end of our table at home and moved her to that table - so she cannot physically disturb anyone else at the table.  However...that does not stop her from running her mouth, which is what happened this morning.

Anyway...

I was sitting next to her and just being near her was making me angry.  

Then the service started.  Our Associate Pastor ( the one who worked with Beautiful and her husband for the pre-marital counseling and was supposed to officiate their wedding but was diagnosed with a brain cyst less than a week before the wedding and had to have brain surgery) was back in church for the first time and talked a little about his journey and continued needs.  They continue to have a long journey ahead of them.  They talked about the power of prayer for how far he has come.  Then another man stood and gave his testimony of a serious medical issue that was healed with no outside intervention.  Again, the testimony was about the power of prayer.  

I was deeply affected by it.  I realized that I am so hopeless about Grace that I have given up praying about her.

Then, the sermon was about Genesis 16 where Abram and Sarai are given a promise for descendants, but they get impatient when they feel that God isn't working so they try to meet that promise in their own way.  

God spoke to me in a lot of ways and reminders.  I was reminded of the time right before we adopted Grace when I was sharing my fears with the then Associate Pastor and asked him "what if we adopt and the child turns out to be the anti-christ?"  His response was essentially, "God is Sovereign.  If that is what He has planned what can you do about it?"  He challenged me about the role of suffering in our lives and we are not meant to have life be easy.  He is powerful over all, Sovereign over all, and is always good.  The message I took from it was 1) obey God when He calls and 2) don't expect it to be easy.

Boy, isn't that the truth...

God also pierced my heart with the reminder that I have given up hope in what I think the outcome should be.  I need to keep my hope in His outcome even though it clearly differs from what I think the ideal is.  I need to obediently walk whatever path He has for me and quit thinking that I know what the end of that path looks like.  Abram, when given the promise of countless descendants, seems to have thought it meant he would have many children.  Thus, he engaged in behavior to further that goal rather than God's goal.  I was reminded of the many, many examples God gives us in His Word that people thought God meant one thing and responded wrong out of that false expectation...and how often I do the same thing.

I cried a lot during the service.  It was emotional for me but cathartic.  I have given up hope.  I have given up praying for the situation with her.  I came to realize that I have stopped praying because, quite frankly, I don't even know what to pray for.  Do I pray for her to be healed?  That may not be God's plan.  Do I pray for me to be able to endure raising her without the anger I felt today?  I don't know that is the best either as I find myself pulling my heart back from her in the attempt to not be so hurt with her words and actions.  Probably I should be praying for God to give me eyes to see her the way He sees her, hands to love her the way He wants her to be loved, a heart to adore her the way He adores her, and words that speak love to her the way He would speak to her.  

I am vulnerably asking you to help me by praying for me that way too.  I can't do this without others praying for me.  I will do another post about the power of your prayers regarding my mother in law situation and the wedding through the months of July and up until the August wedding.  I KNOW that your prayers got us through that.  Please pray for me in this too.

I am afraid.  I am so afraid of her future.  I cannot begin to tell you how terrible things get here.  She does not act like this for others.  Those who know her would not believe me.  But those of you who have adopted kids with attachment and neurological compromises do understand.  These kiddos are totally different at home than with others.  It gives me good insight for my profession, but I am ready to know it and move on!

Once God clicked that worldview back into perspective my anger with her dissipated and my anger with myself increased.  She cannot help it.  She is a sinner.  She is neurologically compromised.  And she has a mother who is also a sinner with extraordinarily high unrealistic expectations.

Then I started to think of reality.  The reality is that she is difficult.  Very difficult.  To leave the house with her results in huge amounts of anxiety for me that probably exacerbates situations.  There is no way that anyone should engage with her for the first hour in the morning before her ADHD meds have taken effect.  Also, anytime after 6 p.m. is a gamble on how she may respond.

Today we are supposed to attend the home school kick off picnic.  I long to see other like minded parents.  I long for our kids to get to play with other kids and laugh and engage.  But...I have little hope that it will turn out well.  I am always so afraid of being in the van with her.  In the van we cannot get away from her.  Her venomous words when she is angry, tired, and the meds are out of her system are not for the feint of heart.  She just does not stop the words no matter what consequences you inform her will incur if she continues.  I have many times thought I would have a heart attack while listening to her talk to me just from my physiological response to her words.  At home we can just put her in her room and go to the living room and turn up the TV so we cannot hear the words.  In the van that is not an option and everyone is affected by it.  Usually JJ will get so worked up by her words that he starts to scream, then hits and kicks me from his car seat.  It is just so ugly.  I am  scared to go anywhere with her.  I never know how it will go.  She is teaching JJ terrible things, and he does them in public so then people think that he is the one with the problem (not saying that he doesn't have impulsive control/anger control issues too).  Her influence is just.so.ugly.

But, when she is on the meds and not angry she is the sweetest, most compassionate, loving, thoughtful, caring, helpful, precious child ever.  Then I feel terrible about the consequences that I have to follow through on from her behavior when I honestly don't believe she was capable of rational thought.  For example, for her behavior this morning we informed her that she will have to stay home and not attend the picnic.  But, that means that someone has to stay home with her.  Buddy would love to get out of a social event...but that isn't good for him either.  The kid is a hermit and we need to stretch his comfort zone.  Do I stay home?  Then I know my husband would be extremely stressed to have the other children by himself.  Does my husband stay home?  Then I would be hugely stressed to have the other kids by myself lol!  Do we just take her and keep her close to us the whole time?  Most of the time I don't know what the "right" answer is with dealing with her.  

I was convicted about that in the sermon too when the pastor talked about "Man's Folly: We tend to seek God's blessing apart of God's means, or we tend to use human effort to receive God's blessings."  I keep trying to fix Grace via "tools" that are not well backed in prayer.  I know that only He can change her heart and that is what is required...but again, I have given up.

Thus, we usually just don't go out with others at all.  Which means that we isolate.  Which means that the kids don't get to have friend contact.  Which means that my husband and I don't get to have friend support.  But, if we go out and the kids act up we certainly aren't enjoying ourselves and the people around us certainly don't want that behavior around them either!

Anyway, I am now rambling.  I don't know the answers.  I know I need prayer.  I know I hate being vulnerable and asking for help but that is part of the problem.  I know I need to be praying more diligently and specifically.  

I am so thankful that today, a day when I was so upset I would have liked to have just skipped out on church all together but attended because I had to, God forcefully met me right there.  What a tangible reminder of His presence, His faithfulness, His power, His sovereignty, His compassion, His grace, His mercy, His love, and His perfect timing:)

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Well, we went to the picnic.  All 7 of us.  Grace was read the riot act about the expectations for her behavior and attitude.  She was informed that if she gave any argument or disobedience at all we would all be in the van heading home - no 2nd chances.  She did well.  As soon as we got in the van to come home she started up.  I had planned ahead in my fear of her behavior and had brought her bedtime medications - including her sleeping pills.  I had her take them right away when we got in the van and she was sleeping in 10 minutes.  We kept her near us at all times.  She did well and was allowed more than the arms reach that was initially discussed as she ran around within our view with the other kids.   I need to remind myself that this outing went ok.  I need to remember some of the reasons it went ok (although that doesn't guarantee that it will work next time).  The best part about it was getting to see friends.  A dear friend and prayer warrior of ours who has a special love for Grace was there and I got to be real and vulnerable with her.  She listened.  She promised to pray.

It was a good decision for us all to go:)

Please pray for us.  If you would like to be a more specific prayer warrior for me please let me know privately and I can share more with you.  I would also be honored to get to pray for you too:)



 

Thursday, August 6, 2015

Finding Joy Again

Having a daughter getting married tends to make one turn inward a bit to consider oneself.  I am been thinking about my own hang ups and how they have affected her while I have been trying to raise her into the woman that God wants her to be. I have also been thinking on how my hang ups may be affecting the process of wedding planning/preparation and her actual wedding day that she wants to be so special and unforgettable, and of course I want that for her as well.

I have learned over the years that I do not like to accept help from people. I have a huge hangup with believing that others help but yet feel obligated, coerced, required, etc.  That the emotion involved is a sense of frustration or even a lesser degree of resentment. I have had a lot of examples of people in my life make me feel that they felt that way.  Out of this I developed a "need" to be self-sufficient such that I would never make anyone else feel obligated to help me or, while they were helping me, feel like they would rather be doing anything else in the world except however they were helping.  I had no frame of reference that others would want to help me because they simply wanted to help.  Too many times I heard people say "yes" to helping someone else, then complain behind their back that the reason the other person needed help was that they were lazy, or incompetent, or...whatever.  I did not want to be the source of those conversations, especially when my biggest need has been to help with our kids.  This week I read an excellent article on what not to say to parenting grieving the loss of a young child.  There are also things to never say to an adoptive parent - one of the biggies is "well, you chose this."  Not helpful.  On so many different levels. Actually, it is downright damaging. Determined to not have someone think that I am just "pawning my children off of them" and abdicating my responsibility to them I have just hunkered down and become more self-sufficient.

Over the years this "need" to be self-sufficient has become an increasing problem as the difficulties in our home have increased.  I have felt more and more alone.  More and more misunderstood (unfortunately I had plenty of actual examples of that).  And became more and more determined to not "bother" others. I have discovered that this has unfortunately led to me actually pushing away well meaning people who genuinely want to help and bless us because it has felt "safer" to do so than to trust someone, count on them, and have them removed or worse, think ill of me.

Last weekend I attended an EMDR training (Eye Movement Desensitization Reprocessing).  I have been extremely skeptical of it since learning about it 20 years ago, but TBRI has strongly encouraged it's benefits so I thought I would at least attend the training.  It is a therapeutic technique used to help people process trauma so they can move forward rather than stay stuck in it.  All of us were required to be practiced upon.  Half-way through the 3rd day I had my turn.  I had remained skeptical up until then despite watching others and hearing of the experience.  EMDR has people focus on a memory of a time they had a "trauma."  I focused on one when I felt not genuinely cared about.  I commonly have the experience that I "know" something in my head but have a hard time getting it to my "heart."  To "own" it.  For example, throughout the horrible process when Superman and Faith's sister left I had "known" and focused and focused and focused on the character of God to get me through.  But it took that one specific moment for it to get it from my "head" to my "heart" so I could really own it and move past the "trauma."  That essentially is all EMDR does.  It just speeds up that process.  So, something I have struggled with for 40 years, by the time I was done with the entire 20 minute experience I was shockingly...better.

Being the skeptic that I am I have been thinking a lot in the past 15 days about what "better" has actually meant, and if it has sustained.  First, it has sustained.  Second, aside from me being able to move on from the hang up of "insist on being self-sufficient at all costs" (and boy have there been too many costs) I was able to really have a heart level peace of "God cares about my heart genuinely, He is enough, and let Him bless me through others - that doesn't make me "not enough"."

The next morning I was driving to work, listening to praise music, and I became aware of the oddest thing.  I was...happy.  Upon deeper reflection I even ventured to say I felt...joy.  Both of those are emotions I have admittedly not felt in a long time, more than a momentary fleeting experience soon to be followed by the heaviness of "reality."  I don't put a lot of stock in "happy."  After all, life on this sin-filled spinning sphere is pretty "not happy."  But the lightness in my heart was a pleasant surprise.  Despite dealing with the death of my mother in law and her memorial and burial last week.  Despite the shock (to all of our congregation and community) about the medical situation with the pastor that has worked with Beautiful and her fiance for so long and now is unable to perform the wedding - resulting in us having to find a new pastor with 6 days to the wedding.  And despite the stress of putting on a large wedding (NONE of which is anywhere in my comfort zone or ability) for our first born beloved daughter and her leaving (320 people have RSVP'd "yes"!!!!)  I am still feeling that peace that comes only from God and has been elusive from me for too many years.

So, practically?  I am so happy about the 320+ people who want to come and share this amazingly precious day to honor our daughter and her fiance.  I am overjoyed that so many people want to come and care for them.  I am focused on the glorious purpose of the day and not the practicalities between now and then. I am, very oddly for me, relaxed (Ok, as relaxed as I think I can get) and delighted with the sheer number of people who have offered to help for the wedding, my being completely ok with it, and not having ANY of those ridiculous thoughts that until last Sunday I was constantly plagued with, and resting in the fact they the have asked to be a part of this to bless us and want to bless us.  I am actually believing that God's opinion is the only one that matters...and it is enough.

I am feeling joy...who knew I could?

Ah, there are so many other little things that are also different, but I have been doing this while printing out the wedding programs and have come upon a major glitch so I must go deal with it.  Not overwhelmed with it, just chuckling and saying to myself, "at this point are you really surprised?  lol!"  In 53 hours our daughter will be married, God will be glorified, and God will still.be.enough:) (and hopefully we will have had enough chairs for everyone to sit on and food for them to eat!!)


Thursday, July 23, 2015

My Husband is the Best of Men

When you want to know how a man will treat his wife, look at how he treats his mother.

My husband's mother passed away 8 days ago.  That has led me to reflect on his relationship with his mother, and the excellent man he is.  He always had a special bond with his mother.  He felt himself to be her protector of sorts.  When I have asked him if he has any regrets about the past 6 years as her caretaker, he says that he does not, that he just simply loved her where she was at and that was enough.  He strongly felt that God called him to so attentively care for her, and feels glad that he got to do what he was called to do.

My husband and I met when he was 20 and I was 19.  I always remember him getting his mom special gifts on her birthday/Christmas/Valentines Day, etc.  She loved unicorns so a gift usually involved one of those, some flowers, and always included a DQ ice cream cake.  He showed his mother love through his attentiveness to her.

He does the same for me:)

We moved away to another state, had children, couldn't travel back as much as we would have liked, but still maintained contact.  He still talked with her on the phone regularly.  His parents divorced about a year after we married so he became her confidant and protector. After she retired from her job he worked hard to convince her that, due to her health, it would be best for her to live with one of her remaining 3 sons to be better taken care of.  She took years to decide, and eventually spent a week with each of her other sons, and 2 weeks with us, to decide where/if she wanted to move.  She felt most welcomed in our home and we moved her down her the summer of 2009.  In 2007/2008 she had a falling out with one of her son's after he said he would not honor her wishes of not having a funeral/other issues (after their father died and that son was in charge of his funeral).  She changed the power of attorney to my husband as she knew he would honor her wishes.

So, in June of 2009 my mother in law came down in a truck driven by her other son and laden with boxes.  We supplied everything else and set her up in an apartment.  We were often there trying to help her get her health in a better place.  We invited her over for meals and kid's activities.  Then in February 2010 she slipped on some ice while getting into our van when my husband was going to take her grocery shopping and she broke her arm.  Her health was very poor anyway so this development meant she could not care for herself at least while her arm was broken.  She lived with us for 2 weeks and it was an eye opening experience.

First, my mother in law's health was far worse than we had realized and we got to see that up close and personal.  Secondly, my mother in law completely put me to shame in terms of her attitude.  She was the most unassuming, content, laid back, relaxed person I have ever known.  She did not complain about anything.  She was willing to just take whatever happened and smile and be happy with it.  Of course, there are downsides to a personality like that (such as not taking the bull by the horns and changing the course of your life), but as a person who tends to be that kind of person (or, many may say I am the bull myself!!) it was humbling to have her be introduced into our chaotic family of 7 and just roll with it.  It really touched me to see her in situations that I would feel humiliated in and she just accepted it (needing help).  I began to think about what I act like when I feel out of control and need help, and how I needed to act more like her and less like...the bull in a china shop.

Two weeks into that experience we had talked and talked about her going into the nursing home for a time, then to assisted living to help her with her cares and her diet (her diabetes was very fragile and did not like to respond like it "should").  She also fell randomly and that was obviously unsafe.  My husband had been working on funding, etc and we pulled it all together and got her moved.  I am so glad that we had that 2 weeks of her in our home.  It was utterly exhausting but a tremendous blessing.

Since that time we took her out as her health allowed and visited often.  My husband spent the most time with her.  He enjoyed just talking with her and being with her.  To take the kids meant he and his mother's serenity was interrupted so he only took them about 1/2 the time;)  So, he just loved her.  3 years ago when the process began for her first amputations he was right there.  Through the past 3 years of every 1 - 3 weeks of specialist appointments for her skin breakdowns not healing, he was there advocating for her.  Through the countless hospitalizations (I don't even want to try to figure out how many there were in the past 6 years), he was there loving her, advocating for her, and trying to keep her calm and knowing she was loved...that she mattered.  She wasn't able to make decisions for herself.  She was content to let him make those decisions, another blessing in the midst of all of this.  She didn't get paranoid and fight him.  It was also a blessing that his family members did not argue his decisions.

It was difficult when he had to make the decision to put her on hospice.  Her skin breakdowns just weren't healing and she was in pain.  Her glucose was all over the place.  Her veins kept collapsing so the local hospital couldn't help her with fluids, she needed a central line.  She was internally bleeding somewhere so her iron levels were very low.  One or two weeks before he put her on hospice her hemoglobin got down to a 3.8!  Her dementia was more and more pronounced.  She was refusing meals/fluids.  There are a lot of things to consider at that point personally, spiritually, medically, relationally, etc.  That last week of watching her die while on hospice was difficult for him.

Yet, he faithfully loved her and was there for her.  He advocated for her pain management and her comfort.  He did not let things go but insisted on answers.  He took care of his mom.  He was her protector, her advocate, her knight...her son.

During all of this my husband has worked hard to not just be her son, but also my husband and our children's father.  He has struggled at times to not feel guilty when one of those roles has taken more precedence for a season, yet he strove to keep a balance.  As his wife, I never ever felt neglected.  I always knew that what he was doing for his mother was what he should be doing.  I always knew, that he would do the same for me or our children if the situation arises.

Even in the midst of the last 6 weeks of her life with 4 hospitalizations and the hospice, he has tried to balance us all and be attentive.  There are many examples that I will keep close to my heart of how he has tried to make sure that I knew that I am also his priority.  I have been very touched by how hard he has tried, and succeeded, in doing this.

I am also thankful for what he has modeled for our children.  He has shown them the Biblical example of how to care for one's parents, or spouse, or any loved one: for better or for worse, in sickness and in health, until death do you part.

He honored his mother's wishes and had her cremated and did not have a funeral.  Next week we will have a memorial service and then drive to her home state to bury her ashes on one of her son's graves.

He is a great husband.  He is a great son.  He is a great father.  He is a great man.  He is a most excellent man.  He is the best of men.  I am blessed to be his wife.






Thursday, July 9, 2015

Too many balls in the air!

Ball 1: My mother in law is not doing well.  We put her in hospice yesterday.  We know that it will be a blessing when she passes.  She has so incredibly many complications with her medical issues (all diabetes related - diabetes is a terrible disease!)  She has dementia.  She started to refused to eat and drink so we are taking the cue to just let her go.  We cannot force treatment anyway.

We debated at length about if the kids should go and see her or not.  My husband did not think the kids should see her - especially how she was on Tuesday.  She was unresponsive most of the time, but at the end of the night punched him as her sundowners took over and her combativeness began.  We had just spent time with her the previous week - a brief time between hospitalizations when she was up and alert and able to hold a relatively ordinary conversation.  But, we decided yesterday to let the kids come up and say goodbye to her.  They really don't know her any other way than in the nursing home (since 2010), multiple hospitalizations, often not knowing who they are, etc.  She has always had such a gentle and welcoming spirit though and is always ready with a smile.  She is not a complainer.  That is a trait that I wish I could emulate better - I must say that my stress level is currently such that I fear opening my mouth because not much positive comes out.  I am pretty much utterly overwhelmed.  So, I have tried to avoid posting on fb or making other chit chat as my dad taught me that if I didn't have something nice to say I should say nothing at all!  Why am I blogging then?  Partly because if I can't speak I still need to get the words out...partly because blogging helps me to unravel my thoughts and put them in some kind of categories and logic.  Sometimes.

I totally digressed there.  I am afraid this post will involve many bunny trails.

So, last night all 8 of us went up to see my mother in law.  My husband was already there and he was uncomfortable when we got there.  The problem is that my mother in law thinks that my husband is her ...husband.  She believed that she was in the hospital and they just had a baby girl.  She was thrilled that so many people came to see her and the baby girl.  She was laughing and giggling.  When words came out of her mouth that were actually words and not gibberish we all didn't know what to say so we just smiled and agreed.  That resulted in my husband being a little (jokingly) frustrated with me when she told me to talk to her husband, I asked where he was, she pointed at my husband, and I just agreed.  I am not good with words right now and don't think that I am describing the visit well, but we were all laughing.  We were all poking fun at my husband.  He was very good natured about it and laughing too - nothing was mean spirited about any of it.  We were not laughing at my mother in law.  It was just probably the best way to deal with the tension and the reality.  My husband is torn between wanting to spend this last time with his mother and being really creeped out at her insistence that he is her husband.  We laugh a lot that he doesn't even look like his dad did.  I am not being irreverent, really.  We were so thankful that the visit was light and full of laughter as a last memory for the kids.  I don't know if we will go up there again as a family.  We will let the kids decide if they want to go or not.  JJ loves to go up and see his grandma and didn't really notice that anything is different.  She hasn't been able to have real conversations for a long time anyway so he just sees it as getting to say hello and be "busy" in her room.  The Middles - it is a little different.  They have already had more loss and abandonment and rejection than anyone should have to have.  Grace is still quite traumatized by her aunt dying Memorial Day 2014 and all of the grief with that loss (and that she hasn't gotten to see her bio family since then).  Superman and Faith are just - quiet.  Like usual.  It is hard to get them to put emotions into words.  Buddy is matter of fact and not relational so he is fine.  Beautiful is struggling with death, loss of a grandma right before her wedding, loss of us as parents being focused on her wedding as we are dealing with this trauma, etc.  It has probably been the hardest on her, and Grace.  We have taken the opportunity to use this to discuss the importance of  having a saving faith in Jesus and what the reality of death is about.

Alright, that was quite enough of that topic I think...

Ball 2:  The Wedding  There is really no way for me to even put any of it into words.  IT IS LESS THAN ONE MONTH AWAY!!!!  I am stressed.  overwhelmed.  afraid that it will not be pulled together in time.  frantic that I am forgetting huge details that will make this all a disaster.  and reminded constantly that this.is.not.my.giftedness!!!!  Stomach in knots.  Crazy.  Despite what is happening with my mother in law we still have to keep moving this forward.  My husband needed a break from 3 days in the hospital and with his mom is as "stable" as she can be for now he and Buddy took off for Menards (and other stores) to try to restore his equilibrium lol!  He loves to shop.  I would rather do almost anything than shop.  Ugg.  If she still remains stable tomorrow we will be heading to another town to get the boys' suits, all of the kids dress shoes, all of the paper products, etc.  Again...Uggg.

A friend came over last night and made the bouquets for us.  She is so amazingly talented and I am.so.thankful!

Ball 3: Letting Go
I don't like this ball any more than the others.  I hate letting go of Beautiful.  If I stop and think about it too long I start to cry.  So, I will keep this short.  I am so happy for her.  I am so proud of her.  I am so thrilled for the next adventure of her life.  But I will miss her fiercely.  She is my Beloved, my First Born.  I refuse to be one of the "those" mother in laws...but boy will this be tough for me!  We keep trying to have as much time together as possible, but between my mother in law, the wedding plans, work, the other 5 kids, and Beautiful working 6 days a week from noon to 8 lifeguarding we don't see her much.  I wonder if it will be this hard with all of the kids?  I feel like by the time JJ is gone we will be in the nursing home lol!

Ball 4: Grace
Grace, Grace, Grace.  About a month ago we doubled her ADHD medication and added a sleeping pill again.  We have also retested her neurotransmitters and will see if she needs another supplement.  We are hoping that there will be more nutraceuticals she can take to help more.  The current plan is certainly helping.  ADHD is a terrible disorder too:(  We have discovered more holes in her walls - one of them all the way to the outside.  My husband was not happy with all of the repairs that he will need to make to that room.  I deep cleaned every corner of her room last week and took out all of the objects she was using to make the holes.  She still sneaks them in there but I will just have to keep on top of it.

Ball 5: My Back
I really hurt my back again.  It seems to have been around the time I helped at camp but I can't think of any specific incident that would have hurt it again (that probably answers if I will help at camp again if asked).  The pain was getting pretty bad again and I absolutely cannot even bear to think about the pain getting back to the level it was at in July 2010 when I was first diagnosed with the herniated disk and started traction...6 weeks before JJ came.  I look back to that time and shudder.  In the past 5 years I have regularly gone to the chiropractor and continued traction - but it has not been nearly as regular.  I will make sure I get back into a routine.  I have had traction and an adjustment twice in the past 4 weeks - once being yesterday when the pain was down my leg and I struggled walking.  I am MUCH better today.  I have learned over the years what things I cannot do (NEVER sit on a floor, not sit in recliners,  no walking inclines, no jumping, not sit with my legs out in front of me, etc).  Ironically those things hurt me far, far worse than carrying our now 45 lb 4 year old.  Odd.  Thankfully JJ rarely wants to be carried anymore - yay!!  So, I am just dealing with pain and trying to be very careful:)

Ball 6:  JJ
This one is a little happier and I will end on this note:)  JJ is doing great!  He still has his temper tantrums that are crazy.  They are not as frequent.  He is eating well.  Talking better - the SPL is very, very pleased with his progress.  I keep thinking that he is quite understandable compared to 6 months ago, but we have had the opportunity to be around a variety of people lately and most of the time they do not understand him.  So...progress but still a long way to go:)

The music therapy has been, I think, a key part to his improvement.  That is common with kids with Apraxia.  He still hangs back and won't engage much with the other kids and sits on me rather than in the group.  I have taken Faith with twice and she got him to engage so will keep doing that and try to back out a bit.  He needs the social interaction.

An aside - I have thought a lot about this, but will only briefly mention here, how much being in the music therapy class with all of those other kids with speech/language issues - has helped me to see JJ's issues more clearly.  One of those issues is that those other kids have speech issues but do not have the severe separation anxiety that JJ has.  I have thought a lot that his anxiety was due to people not understanding him so he looks to me a lot to answer for him (or he can't "retrieve" the word to say).  But he just plan and simple has severe anxiety around strangers.  Immobilizes him.  Praise the Lord we home school him and he doesn't have to go to a situation every day that terrifies him!  He really relaxes with the music too:)

The biggest blessing (and frustration to be utterly honest) is sleep.  Sleep has always been such a problem for him and with all of the Apraxia symptoms we didn't know how sleep fit.  Well, it must have been all related because now that his brain is finally "waking up" and he is improving so quickly...sleep is most definitely being affected too.  So, that means that he is now waking between 6 and 8 a.m. most days of the week.  The other days it is closer to 8 - 10, but most days it is early.  However, this does NOT mean that he goes to sleep any earlier.  Thus, I get 5 - 6 hours of sleep:(  AND, for some reason he is waking more in the night which means that while we had a 3 week period in May/June that he slept in his own bed ALL NIGHT (Oh, what sweet restorative sleep that was for me!!) he is now up and in our bed often by 2:30 a.m.  If I actually get out of bed and take him back to his bed he is back by 5.

The up side is that he is eating earlier in the day without being nauseated!  yay!
Clearly his brain is waking up and he is making awesome neurological connections!  yay!
When we have to wake up early for something (church or therapy) he isn't sick any more (well, actually, he usually is up on his own way before that now and doesn't have to be woke up).  But still,  yay!!!
When he fell asleep in the car on the way to therapy this week (he woke up at 6 a.m. after sleeping less than 6 hours) and I had to wake him up...listen to me be giddy here...HE WOKE UP AND DID WELL!!!!!.  If you remember back to session 3 and my description of him falling asleep before we got there and his typical reaction of being woke up you may understand how happy this makes me.  I cannot even go on enough about what a major, major development this is for him.  Ecstatic I am!  I can practically see his little neurons joining, making memories, and learning lol!

The down side is that I am not getting good sleep.  But, that is certainly not a new development in the past 5 years lol!  Once I am woke up at night I cannot fall asleep for all of the "to do" lists and "what are we going to do about that" discussions that run through my brain.

So, that is that.  We have been eating subway, pizza, PB&J (actually, i never made PB&J for my kids but somehow Superman discovered at camp that he loves it so has been begging for it lol!), and whatever can be thrown together.  I really need to do some better meal planning but I just can't wrap my head around it.  I have a roast in for supper tonight - that will be helpful.

I am hoping against hope that I can get a nap while the 4 watch a movie without causing chaos this afternoon.  Hopefully I can sleep and not be worried about what they are doing...

Superman has finished his undefeated baseball season!!!!!  We have the tournament this Saturday and Sunday...in the 90 degree weather;)  It will be great lol!

Sunday, June 7, 2015

My Current Crazy Life

Uggg, so much!

My mother in law is in the hospital again.  She was in for 5 days with pneumonia, then got out for 3 days, and is back in with a blocked/kinked small intestine.  She is in a hospital 90 minutes away this time.  Due to the diabetes, dementia, and sun downers her treatment is very complicated.  She is non-compliant.  She is delusional.  It is sad.  My husband wants to be there with her, but she doesn't know who he is (thinks he is her husband) and that is making her very agitated and it does not help. It is hard to know how to proceed.  We are just agreeing to what the specialists say at this point.  Her veins keep collapsing so they are putting in a picc line right now.  Hopefully she will not pull that tube out too...

So, in addition to that craziness, I had agreed 2 months ago to be the camp Psychologist for Royal Family Kids Camp this week.  That means that my husband won't get the support from me that he needs this week, and I won't be home to help with kids like he is used to W - F.  We got last minute approval that 2 of our kids get to go to Royal Family Kids Camp, a HUGE blessing, and that should help his stress level.

I am stressed about camp.  My idea of being outside is to go hiking for a short period of time, or opening the windows of the house lol!  I am also known, as I have told you before, as the "fun sucker."  So "camp"  well, the idea of it just stretches me beyond any area of comfort.  But, I am excited to teach the counselors/staff about TBRI and how to work with these kiddos differently so I am doing it.

Grace did tolerable for 3 weeks!  And the past 4 days she is dysregulating again.  I am SOOO glad she is going to camp this week...  Even before she was 2 we noticed the cyclical nature of her dysregulation.  I have not found her symptoms to be consistent with bipolar disorder, but we are about ready to try anything...  It is extremely hard to live with her.  I feel terrible for the trauma the other kids go through.  Beautiful is ready to be away from it (in all honesty, we all are).  Very ready.  That breaks my heart.

Right now she is screaming at me such vile and venomous things as she has been put in her bedroom until she calms.  She argues about EVERYTHING.  She threatens.  She is exasperating and exhausting.  We really need prayer for her to be healed and for us to be able to endure her/enjoy her.  There are no words to explain how difficult things are with her.  She can be so precious, and in public she never displays the full extent of her venom.  But then...

JJ is doing AWESOME!  He loved music therapy last week!  He clung to me and did engage as long as I was right there.  He actually yelled out his name right away when they were doing introductions!!!!  He is doing so much better with talking.  In fact, we have had to laugh several times in the past 2 weeks as we have, for the first time, wished that he DIDN'T talk lol!

My husband and I took Beautiful (and JJ) to her wedding dress fitting and then to Red Lobster for lunch.  JJ loudly announced his need to use the restroom (not in those nice words) and has done so several times in other public venues (like church).  We try to keep our mortification to a minimum and just be pleased he is speaking his mind, but sheeesh!  Aside from that we had such a precious and sweet time with Beautiful.  61 more days and she will be married and gone.  I try not to think about it...

There was a car accident next to our house this week and I was getting everyone ready to go to the pool.  JJ went outside and went right up to the police office and talked to him (while the guy was trying to do the police report...).  We have never  taught him to beware of strangers as he is scared of everyone, so when I talked with him afterwards about that he just kept asking "why" he shouldn't go up to strangers and talk to them.  He has been priding himself on waving at everyone on our walks and says every time, "Mom!  I waved at someone!"  It was hard to figure out how to tell a kid who has been terrified of strangers, to be afraid of strangers now that he is getting more bold.  I am still not really sure how to address it that won't put him back into his shell.

JJ loves to move his body to music and get really wild.  Last night we went to a dance and he danced for hours.  It was so fun to see him be that free with strangers!!

He is also getting amazing with articulation and word retrieval!  I am shocked with the words that he is able to retrieve.  For example, twice in the past week I asked him what a bunch of colors were...and he retrieved the words spontaneously and correctly!  Praise God!

With this new found vocabulary explosion (again, he had it receptively, now it is expressive) is also some serious independence asserting itself.  He sees Grace rebel against us 24/7 with words and actions and he emulates her.  He spews the same words at us.  He is too smart and thinks up things to push limits, some of which Grace never even thought of.  Sigh...

For example, as I was typing this Faith came running in and told me that JJ was stuck up in a tree.  I went to him and asked him why he was in the tree, he said he was chasing a snake and got stuck and was scared (impressive word usage!).  But, when I firmly reminded him that it was good he was scared as he was not to climb a tree as he could fall down and get hurt he said, "why Grace climb it?!?!"  I reminded him, again, that Grace is also not supposed to climb the tree.  He doesn't understand why he isn't allowed to do what he sees his 5 siblings do, whether their behavior is due to them being older...or due to their rebellion.

Wedding announcements went out!  That really makes it real...  The guest list was my most stressful part of this process (thus far).  We have so many people on the list that our church will not hold them all.  It was hard to figure that part out hoping not to offend people.  But, it is figured out to the best that we could and we will just trust God with the rest:)

Well, I am off to try to enjoy my last night of rest before the next 5 days of chaos.  I look around and think I should get the bathrooms cleaned, the laundry put away, etc before I am gone.  But then I think...naaaaa.... I will just hunker down with the kiddos and my husband instead;)