Dear Ones,

 

I have been reflecting a lot over the last few days, and it's hard to believe that it's already closing in on three years since Jay was first symptomatic.  Lindsay was going into her Freshman year of college, and soon she will be graduating, Sierra was merely 9 years old, and will be a teenager this year, Aubrey, barely embarking on her teens back then, turned 16 this week, and Jessica a Junior in highschool, is now a Sophomore in college.  I find it difficult to wrap my mind around the fact that so much has changed in this time frame, in so many ways. 

 

It was at this time, also, that we were becoming increasingly aware that Jay's mother would need to be in the protective environment of an assisted living facility.  She has progressed far enough now with her Alzheimer's, that they have moved her to the lockdown unit during the day.  We had her over for a movie last week, and after dancing a jig for Jay and trying to make him laugh, she asked me who he was.  Aubrey and Lindsay also escaped her memory.  She could not remember how to do rudimentary, routine tasks, and spent much of the time here sleeping. 

 

As I sat looking at her, in the chair, barely aware of her surroundings, and Jay, in his wheelchair, so keenly aware of his, but unable to even move, I was profoundly saddened.  It shook me a great deal to see how much had changed in so short a time.  I miss both of them so much.  Marion's spontaneous renditions of "Phantom of the Opera" or "The Sting" on her beloved piano.  Jay's impulsive need to sit down and pound out Rachmaninoff.  The way she used to play the piano so all the grandkids could dance, and the way Jay carried on that traditioin with our own children and their friends.  Both of them have left such a rich heritage of music and expression through it, that it's hard to believe they have both been rendered unable to play anymore.  One of so many things lost to us these past years.

 

Sometimes, with Jay, I get lulled into thinking that this is our life now, that things won't change any more than they have.  We have climbed the mountain to get past the ventilator issues, and now things are going to stabilize.  That's what I tell myself.  Then I notice subtle things.  The loss of what little use he had of his hand, the weakening of his arm on the left side..the way his mouth droops as if he has had a stroke, the increasing weakness, that is so noticable since the hospital, and I am jolted into the reality that this is a progressive illness.  I am reminded that he has asked to be taken off of life support if he loses the ability to communicate, and then I am struck with fear when I see his eyes twitching and fluttering as he struggles to use the eyegaze, and in my weakness, I begin to worry, as I remember the statistics, and how even on a vent, they hold true.

 

I would be lying if I said that I am not exhausted, stressed, and incredibly lonely.  I miss my husband so much it physically hurts.  When Sierra is struggling through some teen angst issues, or Jessica is asking to do something with friends, and I think about asking him, and he is sound asleep, or so lost in his own discomfort that he can't listen to me, I feel isolated.  When I am trying to sort out bills, asking Jess to carry the dead rat to the trash, (which she does willingly, bless her heart), figure out Jay's filing system, meet with lawyers, hold the girls when they cry, and take care of manual labor issues around the house, as well as caring for Jay, it becomes incredibly overwhelmiing and I find myself treading thinly on my faith.  I find myself randomly talking to people in the grocery store, or even sharing my sadness with my dogs, just to talk about it with someone.  That probably sounds pretty pathetic, but it's honest.  I am used to, in my not to distant past, support groups for homeschooling, church family on the weekends, and just being able to chat with other moms and friends, all situations I find elusive now.  We have many visitors, but they come to see Jay, and even if I try to visit, most of my time is spent tending to him and is frequently interrupted, much like with a small child.  In addition to that, when friends are here, I use the time to fold laundry, file, clean the kitchen, etc., hoping the distraction of visitors will be enough to keep Jay occupied so that I can accomplish something outside of his care.

 

I am sharing this because I need prayers.  I am on my third virus in as many months.  I cannot seem to get completely well, and sleep continues to allude me.  Jay is cleaned, shaved out of bed, and cared for, but most of the time, I am lucky to get a shower.  Not because I am self-sacrificing, but because it's life or death to keep him clean and cared for, for me more than five minutes in the shower is truly a luxury, but definitely one I used to take for granted.  I do not sleep well at night, fearing that I won't hear alarms that go off.  Jay does not sleep until 4 or 5am most nights, so that means that I am up and down until then also.  The girls help, to the extent that they can, but there are many things that I don't want them doing.  I cannot presently afford more hours of outside help, so I find myself trying to do chores, take kids to appointments and catch quick naps on the hours that I do have help.  I know that the lack of sleep is sending me on an emotional roller coaster, and I try to be rational with myself, and talk myself out of most of my breakdowns ;), but sometimes, it's just really hard. 

 

Please pray for me, that I can get adaquate sleep, that we are able to collect Jay's AT&T disability again, so I can get a little more help, and that I can feel the presence of God in a mighty way and experience that peace that surpasses understanding as I go about my daily tasks.  Please also pray for me to have patience, and to be able to understand Jay more and more clearly as he struggles to communicate.  Pray for me to be able to continue to care for Jay and that God will give me the strength, both emotionally and physically, to accomplish the daily tasks.

 

On another note, I want to thank you all again for your diligence in lifting us up.  Just about every need in my last email was taken care of, once again, within the first couple of days.  You have been so incredibly generous and kind to us, that it's difficult for me to come up with new ways to thank you!  Please know how grateful we are to all of you for what you have done for our family for what is now going on three years.  You have been faithful to us and shown us a generosity of spirit that can only come from God.  Please know that He has used you in a mighty way in our lives, and your consistency and kindness have truly meant more than we could ever possibly put into words.

 

We have also been blessed by the fact that the two older girls have become increasingly financially independant.  Lindsay even applied for, and received her first credit card!  She's been so excited to be establishing her own credit and building up her bank account for the future.  We are also so blessed to know that she will be graduating college, virtually debt free.  She has helped me out a lot already this summer, and has been such a blessing to have around.  Her music adds a  brightness to our home, and her servant's heart has been so evident around here.  Jessica is starting a new job as a waitress at Olive Garden and has grown so much this past year.  She often uses her art to express the pain she is in, and it is so touching, and so much a part of her dad.  They are women now, and I am grateful that their father has had this chance to see them blossom into such beautiful people. 

 

I would ask for prayers for Aubrey as she continues to deal with nervousness and its physical effects on her.  She has such difficulty expressing what's in her heart, and it manifests in other ways.  The doctor has given her until July to try to deal with what's going on with her emotionally, then he wants to take steps to get her some other help.  Please pray for her, that she can work through this without too much in the way of outside invasive treatments.  She is so bright and such a wonderful person.  I would love to see her be able to express what's in her heart without fighting such an intense internal battle.

 

I also ask for prayers for Sierra.  She is still dealing with anger and the emotions of becoming  a teenager.  She misses her daddy, the way he was, and it's hard for her to have talks with him about what's going on in her heart.  I know it's a crucial time in her life to have a father, so I pray that whatever gaps are experienced by Jay's illness, that God fills in other ways.  I also ask that you pray for me about schooling her next year.  I do not, as yet, know what I am going to do.  Ideally, I would be able to hire someone a couple of days a week to take care of Jay and teach her myself.  I know that with God, all things are possible, so I am praying that these last years before high school, I would be able to teach her, and spend time with her.

 

I am also continuing to pray about going back to school myself.  I have long been feeling like I should, but doubting my abilities and worrying that by doing so, I am not trusting God to provide for us.  I have always wanted to go back, whether Jay had become ill or not, but now I feel it's a necessity, so I ask that you pray that God will give me clarity on this issue,and guide me as I look toward an unknown future.

 

As I said before, Jay is doing well.  He is positive and upbeat, for the most part, and trying hard to adjust to his new life.  Sometimes at night, I lay in my bed and try to imagine what it would be like if I could not lift my arms.  How it would feel if I had something I was just bursting to say, and couldn't make people understand me.  What would I think if I had an itch I couldn't scratch, or tears that I could not even wipe from my eyes, let alone hide?  I have watched Jay's mother lose her mind, and he, his body, and have had people ask me honestly, which I think is a worse way to go... I don't know if I can answer that for sure, all I know is that experiencing the horrors of ALS from a front row seat, has rocked me to the core.  It was an awful thing to hear about when I knew of it from a distance, but watching the man I have loved since I was 16, go through this, has been incredibly painful.  I pray daily, that God will be merciful and heal him.  I ask God at night to take this from Jay... I find myself trying to bargain with Him to give Jay his life back.  How do you redefine yourself?  When everything about you, your laughter, your music, your hugs, your practical jokes, your cooking, your sports, are taken from you?  The list goes on and on.  I wonder how Jay goes about re-building all that he is, and creating this new Jay that's locked in his own body.  It boggles my mind, when I try to think about it too much.  How much of us is what we do?  How much are we defined by our actions and what we are capable of?  How much would of yourself would you lose, if you couldn't do anything you physically do today?  Mostly, my heart just fills with empathy for him, and deep grief for the songs in his heart that won't be written, the things he wanted to do with his kids that will never be done, the many hugs he still had in him that will never be felt.  I grieve these things every day.

 

There are a couple of small things that we need help with, but mostly this letter is just to ask you to lift us up.  We are all hurting and broken, and we know that God is mighty and hears our corporate prayers, so our family is asking you to lift us up, generally, for renewed strength and courage.

 

Please continue to pray for:

 

~A way for Jay to use the computer for the internet (cheek mouse, etc).  If you have expertise in researching such things, please do so!

~The pending issues with AT&T disability

~Jay's mother, Marion and his brothers and their families

 

A couple of new needs/requests:

 

~Some kind of wireless doorbell for Jay's bed so he can easily call us.  He is having trouble generating the strength to lift his hand to the bell, and sometimes we don't even know he needs us when we are in the same room unless we look directly at him.

 

~We are hoping to travel again this year, for Lindsay's graduation.  Please pray that that will be possible for Jay.  It would mean the world to Jay if he could see his first daugther graduate from college, when he worked so hard to make that a possibility for her.

 

~Lastly, if I am able to keep Jay's AT&T disability I will be able to afford another caretaker.  Wanda is wonderful.  She goes above and beyond the call of duty, and we love her, but there are times when she is unavailable, and a recent back injury she had (she is ok now, praise the Lord) made me realize that we need to have another person in place.  I would also like to have a team in place so that I can take a weekend  or two off a year, or possibly travel back East for see Lindsay perform once a year or take the girls on a brief trip.  So mostly, I am asking, if you know of somewhere to post an ad for caregivers, to please do so, and if you would like to learn Jay's care so that you can volunteer a couple of times a year to allow me time to travel, I would be so grateful.  We are looking for males preferably, strictly because with the amount of females in Jay's life right now, I am getting a strong sense he needs some "guy time", but I certainly would not rule out women.  Please be praying about this and if you know of anyone that would "fill the bill" as either an occasional volunteer, or a regular caregiver, let me know.

 

I ask that you please forgive me for "venting" in this email, but I prayed before I wrote it, and I know that I am being called to be honest about my personal struggles as well as those of my family.  There will be good months, and rough months, as is the way with most of life.  I know that we will see more blessings as well as many more hardships before we end this journey and we gain nothing by pretending the hardships do not exist.  I know that growth happens in the valleys, and I am definitely counting on the positives that will result from the pain.  I am grateful to a God that allows me my "moments" and loves me anyway, and I am always in awe of how He uses all of you to bless our lives.  Thank you for praying for us and showing your hearts to our family.  We love your encouragement and are so blessed by your time and kindnesses to us.  Thank you, as always, for being "there" for us in every conceivable way.

 

Love and blessings, TJ and the family