The Spiro Family

Thank you.....

2011-01-25T05:29:00.000-08:00

We, as a family just wanted to say how touched we were that so many of you came to John's Memorial Service, wrote notes of encouragement ( we will treasure them ) and for those who had the time, waited in line to express your love for us. We felt your love and we know that while the days ahead will be tough, we are surrounded by you, our friends and family who will be there to remind us of God's Sovereign and loving hand in our lives. We trusted him through the journey of ALS, now we must trust Him anew in this journey called grieving. What's been most startling to us is the quiet of no machines running, no "non stop survival" mode of the last 2 months, and no Powerchair sitting by the door. Its deafening in its silence. Yesterday the ALS association came by and picked up the Hoyer Lift and his Powerchair. The Hoyer Lift was a lifesaver for us when we could no longer transport him from his bed to his chair. His powerchair was like another member of the family. Now they are gone as well and our bedroom feels empty, as does our home without John.

The kids are missing the constant conversations they could have with him at any given moment. They loved coming home and popping into our bedroom to talk about their day and to hear their Dad's thoughts on whatever was going on in their lives.
I know that God will bring other men into their lives to help listen and come along side each of them but my greatest hope is found in the following verse.
Psalm 68:5 says God is " Father of the fatherless and protector of widows".

Even in the silence, we are not alone. Psalm 62:5

On God alone, O my soul, wait in silence. For my hope is from Him. He only is my rock and salvation, my fortress; I shall not be shaken.

We shall not be shaken but will grow in our love for the Savior as we lean on Him even more in the coming days.

Lastly, we cannot thank each of you enough for your constant and unwavering support to our family for the last 18 months. You did not watch from the sidelines but you choose to walk through it with us and came along side us and have been there for us, practically, financially and emotionally. We are eternally grateful for each of you, family and friend who have share this hard road with us.

Love,
Kathy, Gabriel, Joseph and Amanda

--Update, From Gabriel
I would like to add my own 2 cents in that seeing you (the Church) and others serve us has helped me grown in my own love and desire to serve in the Church. It is said that actions speak louder than words, that is so true. While I know there were many of you that were not able to actually come over and help clean or bring a meal, or contribute to use ... the fact that you would pray for us is blessing enough. My soul can most definitely say that "it is well with my soul"! Our house has been surrounded by grace and it is only by your love and support that we have been able to walk through this dark road.

Thank you!

P.S. While standing in line, some of you all said that you were also interested in history. If you were on of those people, please message me.

John Spiro's Memorial Service

2011-01-16T10:54:00.001-08:00

The details of John's memorial service are as follows:

Saturday, January 22, 2011
Covenant Life Church
7501 Muncaster Mill Road
Gaithersburg, MD 20877

9:15-9:45 Private Family Viewing
9:45-10:45 Viewing (the family won't be present for this viewing)
11:00 Funeral

* A sign language interpreter will be provided.

Reception immediately following in the church lobby.

If you are interested in helping with the food for the reception, please go to:

http://www.signupgenius.com/go/spiro

If you would like to help the Spiro family financially, in lieu of flowers, a link has been set up to do so:
http://www.spirofightclub.blogspot.com/

Condolences for the Spiro family may be sent to:
9812 Meadowcroft Lane
Gaithersburg, MD 20886

John Andrew Spiro: September 6, 1954- January 16, 2011

2011-01-15T17:00:00.000-08:00

Around 9:00 am this morning, John Spiro went to be with the Lord. He was surrounded by his family. Those who have known John, can attest to the fact that he lived well, died well, and has now heard, "Well done good and faithful servant."

"I have fought the good fight, I have finished the race, I have kept the faith." 2 Tim.4:7

Details on memorial service will be forthcoming. Thank you for all of your continued prayers.

Saturday Update

2011-01-15T16:40:00.000-08:00

Updating from the Spiro home. . . John has been comatose all day with very shallow breathing. He is peaceful and comfortable, which is an answer to prayer. The family is surrounded by friends and family and the evidence of God's grace is abounding in their home. They are grateful to be carried by the prayers of so many - God's specific care has been shown time and again over the past week. We know that John will soon be with his Savior.

The family covets your prayers and we will update the blog when John enters his eternal rest.

Thursday, Jan 13th Update

2011-01-13T15:53:00.000-08:00

On behalf of John and Kathy and their family - thank you so much for holding them in prayer. They are truly feeling "carried". There is such a peace and grace that surrounds their home. Since the meds have been increased, John has become more comfortable and they are grateful to be able to keep him at home. He is sleeping more. The times that he has been alert and even able to talk some have been sweet, precious times for the family. They have gathered around him and shared stories, memories and pictures. They've talked, laughed and cried. Please continue to pray for strength and comfort.

"And when called to face death and eternity--let us especially look unto Him. He will be with us in the dark valley--and whisper peace. He will go with us across the Jordan--and cheer our sinking hearts. He will guide us to the golden gates--and lead us up the glorious streets, and present us unto His Father! "

Update

2011-01-11T14:43:00.001-08:00

Hi Everyone -

Just a quick update on things. After a very long and hard weekend for John as well as their family, it became clear that something had to change in the management of his care. Yesterday was a particularly rough day. John is still having considerable trouble with congestion and breathing and is requiring around the clock, constant care - without any major relief for John. Finally, Kathy visited the Hospice House (Casey House) in Rockville, at the suggestion of the Hospice nurse and others - thinking that might be the next step for John - having them manage his care. This was hard - the thought of having John away from home. After talking with them and others, they've decided instead to try to change things at home and see if they can manage his symptoms and get him to a comfort level without having him leave home. One of the major changes is in the doses of medications (they realize that he should be having much higher doses). Now, they have a new schedule and amount of meds that will hopefully bring John's body to a place of comfort with less distress.
They really desire to have John stay at home with them. Please pray for John's comfort and continue to pray for grace, strength and comfort for Kathy and Amanda as they continue to be the primary, heroic caregivers as well as their entire family.
Thank you for standing with them in prayer.
~Susan

2011-01-05T17:47:00.000-08:00

Family Photos

Photo Credit to Susan Nelson

New Years Update

2010-12-25T11:17:00.001-08:00

We have enjoyed a rich time as a family over Christmas and thanks to Dave Wilcox the sound guy at our church, we were given a DVD of the Christmas Eve service. ( Thank you Justin Cowan for delivering it ) and had a peaceful morning opening gifts and having a delicious breakfast....thank you Susan for the Cinnamon rolls! Now that Christmas is over I have a moment to give you an update on John and life in our household.

I will try to fill you in on the past 3 weeks....... 2 weeks ago was a really rough one for all of us. John's was struggling with his breathing and specifically had a hard time getting his lungs cleared out. There were many very late nights on the phone with hospice......until after their continued encouragement, John finally agreed to take an anti-anxiety drug to calm him down before these episodes begin, and morphine which helps to open up his lungs and improve his breathing. After one of these particularly bad nights , I had a mini meltdown and called Charlene Vigil , a friend and nurse who is part of our church. Many months ago she had offered to provide nursing assistance during the nights so Amanda and I could get some sleep. After holding off for many months from taking her up on her offer, I was now ready for help. That night she came over and was here till the early morning hours assisting us with Chest PT's and suction machines, giving us some much needed rest. She came the next night and did the same thing. I felt like the calvalry had arrived to us war torn soldiers. Since Charlene has begun coming she has now assembled a group of gifted and amazing servants who are nurses and who have kindly offered to help us each night with John's care. We are so grateful that you would do this for our family. Words are inadequate to express our heart felt thanks.

While John is more comfortable now that he is using the drugs to help him with the symtoms, he is also using the oxygen more each day and sleeping more each day. This is what we expected and what will happen as he is able to get less oxygen in his lungs. When he's fully awake and rested...he is still very alert and very much John! His mornings are the best, by nighttime he is much more tired and less conversive. We are so grateful he is not as stressed with his breathing and we have more time to talk and enjoy each other.

While we continue to enjoy precious times together and though we have stopped having visitors, our dear friend and pastor Adam Malcolm continues to visit John and is now reading to him from the book Heaven by Randy Alcorn. A book that is helping to prepare my wonderful husband even more for the moment he will see his Savior face to face and behold His glory. We do not know how much longer John will be with us but we would want you to know that we are all doing well in our souls, filled with God's amazing grace, and so very grateful for the time we have had. ALS has often been referred to as the long goodbye. We have grieved much along the way as John was faced with one loss after another. So many milestones have marked our journey. Not being able to drive anymore, not being able to play his beloved guitar anymore, not being able to stand, or being able to hug each of us, not being able to feed himself........the list goes on and on. There have been many tears, as we each had to face the reality of our new normal. But through it all we felt sustained by grace and given strength we know was not our own.

Lastly, you our friends have made this journey so much lighter through your constant and loving care for our family. You have brought us meals , cleaned our house, sent notes of encouragement, gifts of money to help out while I’ve taken Family Medical Leave from work, brought church to Johnny so he could experience corporate worship, those men who would come regularly to visit with John, giving us time to run errands, Christmas dinners fit for a king, youth groups who cleaned our garage and chipped in their own money to buy us a refrigerator for extra meals, The list goes on and on..............

Romans 8:28 says that for those who love God....he works all things together for good, for those who are called according to his purpose.

By God’s grace we felt very early on that we were called to trust Him and that all suffering brings with it an opportunity to display his work in our lives. We pray that in some small way God has become greater to each of you through our trial, that you would not fear the future and know that God allows all these things for our good and for his glory.

Pictures from Open House

2010-12-17T04:56:00.001-08:00

Worship Night -Nov. 21

2010-12-16T18:02:00.000-08:00

Here are some pictures from the night of worship we had at the Spiros in November.

Meal Sign Ups

2010-12-16T17:52:00.000-08:00

Hi Everyone -

I wanted you all to be aware of a website that has been set up to coordinate meals for the Spiros. If you would like to help the family in this way, please visit this site to sign up. John's care has become quite a full time job, so meals are a great help. Details are on the following website (also located on the sidebar of this blog).

http://www.takethemameal.com/

When you log in, use the name "Spiro" and password "4701".

Thanks!

Update - December 18th

2010-12-16T14:48:00.000-08:00

Thank you so much to each of you who came to the Open House and waited patiently to speak with John. He regretted not being able to visit with every person. We are grateful for each of you and what you have meant to John. We also enjoyed a wonderful visit with John's brother Dennis and his family last week. His sister, Christy, from Arizona and her husband will be spending the holidays with us as well as his sister MaryAnn, who lives in Baltimore. We are so grateful for the time we have to say what's on our hearts and express the love we feel towards John.

Every week his health continues to deteriorate; breathing and speaking are becoming extremely difficult and exhausting. The hospice staff have stressed the importance of keeping him calm and rested. Therefore, with great sadness we must now gently close the door to visits beyond family and very close friends. Rather than spending precious time trying to schedule visits, we as his family now feel

its best that we simply spend our time surrounding, loving and supporting John.

We continue to experience God's grace each day and John's soul is at peace, awaiting the day when he will see his Savior.

Please pray as we continue to care for John.

Link for Financial Help

2010-12-16T04:01:00.000-08:00

Hi Everyone -
A friend from Kathy's work has set up a blog with a paypal link for John and Kathy. If you would like to contribute financially, this is great, easy way! Thank you for your continued prayer and support.

The website is http://spirofightclub.blogspot.com/

~Holiday Open House~

2010-12-04T10:34:00.000-08:00

Hi Everyone -
John and Kathy and their kids are looking forward to seeing many of you tomorrow. (Sunday, Dec 5). I wanted to simply remind everyone that John is not up for long visits or talks. Due to his decreased lung capacity, he really needs to conserve his energy as much as possible. John will probably spend most of his time up in his room and you are welcome to come in and say hello, but please be mindful of this. Knowing John, he would never want to stop a conversation or make anyone feel uncomfortable, so that's why I thought I would let everyone know ahead of time! :)
As a reminder, their home will be open for visitors between 2 and 5 tomorrow. They'd love to see you!

Update - November 23rd

2010-11-18T14:38:00.000-08:00

Well, much has happened in one week...... Since John was released from the hospital we have gotten all the necessary equipment and meds to help fight off any future lung congestion. What a relief!!! We were also able to get hospice care in place which will now oversee our care, our meds and also will provide extra help for some of the daily tasks we have been doing. We are all very relieved and encouraged by their involvement. It also became clear as we considered what the next couple of months will look like that I needed to be home full time in order to care for John and to make the most of the months we have together as a family. I am so grateful there is such a thing as the Family Medical Leave Act which allows employees up to 3 months of leave, while paying their insurance, and holding their job for them. Right now I will be taking off through the holidays and then will reevaluate if I should go back to work on a more reduced number of hours. For now, its been a real gift to have this time together as a family! We could not be more grateful.

Wrote this one day later..........I'm so slow at posting :(

We are now officially in hospice care as we have met with the lady who will be our primary nurse and a social worker. They are seeing about getting a CNA....nurses aid, to come 3 mornings a week to do the morning routine for us. This would be an incredible help to us, so we're praying they have the available folks to be able to do it. We will find out soon. Additionally, our nurse Leslie will come twice a week to check in on John and monitor his status. In the short time we have been with them, we've been overwhelmed by the amount of support we have received.

For many years we have had the tradition of going out with our good friends Steve and Vikki Cook to cut down our Christmas trees after enjoying a breakfast feast together. Well, after a few cold and rainy years and the Cooks moving away to Minnesota we began to go and purchase trees that had already been cut down. This is then followed by lunch at Red Robin restaurant. Last year the ALS association provided the lift van allowing us to do this family tradition. Thanks to your contributions and support in the " Walk to Defeat ALS" they will once again be providing a lift van so we can continue our family tradition.

We continue to be incredibly blessed and humbled by the care we are receiving from so many of our friends and family. The delicious meals, the calls, the gifts of money.......Amazing! Sunday night about 40 people came to our house for what has become known as " Bringing church to Johnny". It was such a rich and encouraging time for John and the rest of our family. The scriptures that were shared, the songs that were sung and the prayers that were prayed.........really helped us to redirect our focus not on ourselves and our trial but on our savior who suffered the ultimate suffering, death on a cross.

John loves visitors but sometimes does not know his own limits :) So, please give Amanda or me a call before you stop by for a visit. A - 240-676-0257, K - 240-676-4921. Even is you are scheduled, its always a good idea to call. Somedays are better than others. Thank for your understanding!

Have a wonderful Thanksgiving!

Love,

Kathy

Home from the Hospital

2010-11-13T09:40:00.000-08:00

We are relieved and grateful to be home from the hospital. The necessary treatments to clear out Johns lungs were very helpful and made him feel much better. Sleep or rest however was another story . After being there one night and one day, we felt we'd recover better at home so asked to be discharged. Friday was the day we were scheduled to go to the ALS clinic for our 3 month "check up", but couldn't make it because of being in the hospital. While in the hospital however, they did perform the lung capacity test which showed that John's number had dropped from 40% in August to close to 25%. The progression is moving at a much quicker rate than we expected. The reality of the disease and its affects hit us afresh and have prompted us to get many things in order. Doctor Mays our doctor and friend is caring for us so well, ordering meds, machines, and also will be getting the ball rolling with Hospice Care next week which will be a welcome relief for our family. In addition we now have oxygen, a nebulizer, suction machine and BPap ..... scattered around our bedroom. All things considered, we are doing well and are looking foward to enjoying precious times with friends and family. God continues to encourage us through his word and assures us we are not alone as we go through this. We covet your prayers for our family that we would glorify God as we walk through the next few months. Your notes, meals, calls, and visits all mean very much to us. We feel so loved and cared for and are so grateful for each of you.

Psalm 9:9-10...The Lord is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, Oh Lord, have not forsaken those who seek you.

Romans 8:18...I consider that our present suffering are not worth comparing with the glory that will be revealed in us.

Love,

The Spiros

#2 Update

2010-11-12T10:26:00.000-08:00

Hey so Amanda here =) Okay so Dad is still in the hospital and is looking to be discharged. He spent the night here and was cough free. He had a nebulizer treatment around midnight and after that was put on the hospital's BPAP machine and tried to go to sleep at 1:45. At 3:30 he woke up and realized the machine wasn't working properly and we called the respiratory man. We ended up hooking up our BPAP machine with their mask, since we forgot our mask earlier that night. He had one more nebulizer treatment and was ready to go back to sleep at 4:45. Doc Mays greeted us in the morning and let us know what was going to happen today. Dad's breathing is doing much better and all the congestion is out of his lungs. This is mostly to due to the nebulizer which Doctor Mays ordered for us to have at home. Right now we are in the process of getting him discharged. We are waiting on his flu and pneumonia shots. The process of getting him discharged can take 5-8 hours, so we are trying to get thing moving so dad can get home to his bed and have a good night's sleep. This morning I was blessed by texts and emails from friends just encouraging our family with scriptures and many, many prayers. Thank you! God is in control of this situation and he remains faithful throughout this time. These texts and emails of encouragement have hammered those truths further into my heart and that is the biggest demonstration of care.

Hope you enjoyed the photobooth pics! We got a couple of 1 am laughs out of it.

Love,

~Amanda

Update on John

2010-11-11T17:56:00.000-08:00

As many of you have heard by now.......early this afternoon on the recommendation of our Doctor
( Doc Mays ) John was brought to the hospital to get some chest X Rays to determine if he had Pneumonia or not. For the past several days he has had a hard time coughing up mucus in his lungs. But, because he has little muscle allowing him to cough , he has a hard time getting his lungs cleared. They are doing many different respiratory treatments on him to loosen things up and clear out his chest. We're doing well and feeling a God's grace and peace. Our good friends the Fortiers are in the same hospital awaiting their son Eric's tonsils removal. We seem to do everything together :). While I stayed with John, Chris Fortier and Amanda went out and brought back pizza for all of us, so its been a real party in the ER. While we wish he was home, we're glad he is in such capable hands and they can treat the problem better than our family could. They are giving him a Nebulizer treatment every 4 hours, which has already made a huge difference. Thank you to everyone for their texts, emails and prayers. They are much appreciated! We feel so loved and cared for as we continue to walk through this season of our life. So comforting to know God orders all our days, for our good and for his glory!

Walk to Defeat ALS

2010-11-04T16:41:00.000-07:00

Last Saturday morning a large group went to Frederick to join in the ALS Walk in honor of John. It was great having John join us this year!

Here is the link for the rest of the pictures from the morning:

http://www.facebook.com/album.php?aid=84083&id=1043064000&l=6a730d5d88

2010-11-03T07:12:00.000-07:00

Amanda here =)

Well as you know we aren't that amazing at blogging. Today is a very special day, it's my Mom's birthday!! I figured this is a perfect opportunity to use this wonderful blog to share about what an amazing woman she is.

My mom is my best friend. It hasn't always been this way. Through the ages of 12 and 15, I was a walking terror. I was running after the world hard and having "fun". All though I wanted nothing to do with her, she wanted everything to do with me. And I was not happy about it. She pursued me with all the strength the Lord had given her. She basically never trusted me, which was very wise. She continually would check up on me and try to talk to me and seek me out. I hated it. I hated the fact that she always had to be involved. I hated even more that she was always right when she would confront me on what I was up to. I hated that she would tell me no. She loved me so much, that she cared more for my soul than she cared about what I thought of her. She knew that challenging me to do things God's way and not the worlds way, would make me dislike her. Glorifying God was more important to her, then having my approval. There were tough times, lots of fighting, screaming, arguing and crying. She took her calling as a mother seriously, she knew that this time in my life she couldn't always be my "buddy" but had to parent me.

I am now eternally grateful for the sacrifice she made for me in my teen years. Thankfully God has saved me! I am so happy God used my mom in my life for his purposes. It grieves me how much I hurt her and how many times she would go to bed crying. Now we are best friends and are able to have a biblically based mother-daughter relationship. I am provoked by her daily example of laying down her desires to serve others. Ever since I was ten she always had me serving at the church, for mothers with kids, conferences, and at home. I love her so dearly and I am privileged to be her daughter.

We are now watching my dad suffer with ALS, it has been more than difficult and testing. However watching my mom earnestly seek the Lord daily and seeing her grow in her love for her Savior is such a blessing. God is strengthening our friendship even more through this trial and I am undeserving to have such a wonderful best friend. Thank you Lord for giving me such an amazing example and for giving her life. Happy birthday mama!!!!!

OVERWHELMED AND AMAZED

2010-09-21T08:02:00.000-07:00

That's how we would describe John's reaction to his surprise party.............

John apparently had been suspicious that something was in the works, but had no idea it would be on such a grand scale :)We are so very grateful to each of you for coming and making it an unforgettable night for our family. It's a memory we will cherish for a very long time. Where do we begin..........for those of you from out of town or are simply reading our blog. The night included lots of music as you would expect from a party for John. We had the Flower Hill Bluegrass Band which John helped to start many years ago, and a jazz group that John regularly played with for various events.

As you will see from the pictures, it was an outdoor event at the beautfiul home of good friends Eric and Dawn Newquist. Many months back Dawn asked what she could do for us.......I mentioned that I would like to have a party for John and she said "Let's make it happen!" The complete generosity of these dear people to open their home to over 200 guests so that this party could happen, brings us to tears. They have opened not only their home but their lives to serve our family.....thank you Newquists!!!

As John pulled up in his limo ( van service provided free by ALS Association ) he was surrounded by his cheering friends. In usual John fashion, he proceeded to peel around in his powerchair doing 360's. The food was delicious including smoked pulled pork provided by our good friend Scott Sheldon of scott@fat-daddys.com.

There was a special program which included songs and testimonies honoring John. We hope to post a video with highlights of this soon. We opened our program with Johnny B. Goode..........followed by the Ballad of Johnny Spiro to the tune of Davey Crocket........you get the idea. Lots of laughter as well as tears of gratefulness as John's friends communicated the impact his life has had on them. It was all so moving and heartfelt and John was deeply moved and grateful.

One of the most unexpected moments came as our friend Harry Gottlieb presented John with his Father's Purple Heart that was awarded to him from WWII. He said " I wanted John and his family to have this for the courage and faith they are showing for not giving up" in the face of their trial. Wow! Not a dry eye in the place. Thank you Harry, John felt so honored but unworthy

Then our pastor, Adam Malcolm presented us with money that our friends has collected to help towards buying a van with a lift. To our amazement, we were given almost $9,000. Unbelievable! We have been blown away by the outpouring of love and support from our friends and family. This was yet another expression of love and care for us. We are so excited to begin looking for a van so we can go places without the cost of a cab. THANK YOU SO MUCH! We'll post a picture after we find one. We have included pictures of the party and only wish we could have included many more of you. It was an evening proclaiming God's grace and God's glory. We are eternally grateful to God!

Below are a few more pictures from the party!

Oops! Forgot one.

2010-08-29T14:44:00.000-07:00

Wedding ring is now on his pinky =)

Some photos from our GW trip!

2010-08-29T14:27:00.000-07:00

Our driver, Joe.

Going around the block checking out George Washington University.

On our way home!

Update from GW ALS Clinic

2010-08-28T14:27:00.000-07:00

Our visit began with seeing our Pulmonologist. The lung capacity test revealed that John was at 40%. It had gone down from 60% 3 months ago. The doctor recommended that he try using the B Pap device at night. This will hopefully help him to not work so hard breathing at night, will allow him to sleep better and have more energy during the day. They will be fitting him for that soon. After that we were seen by our Physical and Occupational Therapists, as well as our speech therapist, Neurologist, social worker, ALS association rep, medical equipment rep and last of all our psychiatrist. John entertains most of these young fresh out of college therapists and they don't quite know what to do with him. We had a new ( our 3rd ) shrink this time so we were able to once again share with her all the ways we are being cared for, the hope we have within us in Christ and the joy we are experiencing in the midst of this illness. She was quite taken aback and said " what a happy story, that is not the norm". What joy it gave us to declare God's goodness towards us. What a change we have seen in our own hearts as we are not only not dreading going, but are actually filled with anticipation as to who we can share with while we're there. This a work of grace and the result of all the prayers on our behalf when we are there. Thank you!

The waiting room is a mixture of people of various ages who also have ALS. Lord willing, we want to try and introduce ourselves to some of them next visit. Having Amanda along worked out really well as she's the primary caregiver when I'm at work and the PT lady was able to show her how to stretch out John's arms and legs. The Medical equipment rep is looking into getting John a device that supports your arm when you can no longer lift it on your own. This could be helpful for eating and drinking.

Due to fluid build up in his hands and feet his wedding ring was very tight and unable to be removed. Our Neurologist was so concerned that she tried to slide it off using soap right in the exam room. After than didn't work they sent us down to the hospital ER to see if they could remove it. But we realized this would take too long and our ride would be there soon. So, thinking we'd take care of it next week we headed home. That night our friends Marc and Terry joined us for dinner and as we mentioned it and they saw John's finger which by now had even become more swollen, Marc got his heavy duty wire cutters and a pair of plyers and cut away. Woohoo! There was just enough room that he didn't cut John's finger. At times these ALS clinic visits may tempt us to be a little discouraged because of the "semi-'futile" nature of the care that is available for this condition. BUT, the reason we are not is that we really believe God in His sovereignty has a purpose for our participation. Again we thank you so much. We feel your prayers!

John's Testimony at CLC

2010-08-10T11:40:00.000-07:00

John was asked to give his testimony at Covenant Life Church. Here's the link if you'd like to watch the video.

Summer Update

2010-07-31T12:29:00.000-07:00

Dear Friends,

Sorry for my lack of an update. After much prodding from friends, here it goes!

Back in May we had our GW ALS clinic visit. Thank you so much for your prayers. Once again, we felt them and know they made all the difference. We didn't learn anything new at this visit, however, had a couple of stories to share.
Our day began with a new driver from a new Cab Co. picking us up. I say this because, I liked their cab better and told the woman driver how much I liked it and commented that our whole family would be able to be in the van at the same time, and how nice that would be. Anyway, she then said to our surprise, " Oh, did you know we sell used ones all the time for a very reasonable price?". We then asked her how much she was talking about and she said usually under $5,000.00. We had never really prayed about a van because it seemed like an impossibility ....... real people of faith :), but now this opened up a potential for actually getting a van. We were so encouraged and told our driver how God had arranged for her to drive us that day and how she was being used by God. She then offered to call her boss and find out whats available right now. On Monday she got back to us and said that nothing is for sale right now, but things change quickly, and for sure some will be available in December. Woohoo! We hadn't even begun our drive and were praising God for the prayers of the saints and for God going before us and providing what we need before we even ask. This would change our lives dramatically. As it stands now, we have to pay about $40.00 to attend church using a cab and that makes it difficult to also go on Date Nights, Youth Meetings and other events John would like to attend. So, this would be something we are excited about and now in total faith for and would appreciate you joining us in praying for a van to become available as quickly as possible.
Our first stop is Pulmonary where we check in and pay our co-pay. So, I'm standing there with John next to me and really I don't think John or I had spoken much of anything, maybe I asked him if he had his insurance card. Out of the blue Tawanda, the individual checking us in said "how long you two been married?" I told her 23 years and inquired why she was asking. She then said, "Oh you two just seem comfortable and I can tell you're in love". THEN, she elaborated and said "You asked him a question and he answered". Who would have known that simply not grunting would be such a testimony!

On to present day.

Since that visit, the disease continues to progress, to where John now has a hard time feeding himself. As a result of this progression, it is difficult leaving him alone for long periods of time. Amanda has quit her job in order to stay home with her dad and be available for his needs - from preparing food, to adjusting his chair, picking up things that are dropped and the list goes on.

We are hoping to find some willing volunteers who could assist us on a more regular basis. This could include afternoon visits or stopping by to help with other personal needs. You don't need medical training, just a willing heart! If anyone could serve us in this way, please contact us at jakaspiro@gmail.com

Even if you are not able to do anything regularly, drop in visits are much appreciated - please call John's cell prior to coming over: 301-437-1510.

We will be returning to the GW clinic at the end of August for our quarterly visit. We don't ever expect to learn much from this visit. It is more a monitoring of the progression of the disease. There is no treatment. The hardest part of these visits is the reality of all that is being lost and our "normal" keeps changing.

"But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body." 2 Corinthians 4:7-10

We continued to be sustained by grace. We are so encouraged and thankful for every prayer, note and gesture of care on our behalf. Thank you.

~Kathy

November Update

2009-12-02T22:14:00.000-08:00

Time for our rather belated November Update.

First things first. With the support of all our friends and family, we were able to raise $2324.00 for the ALS Association. We had over 50 people who joined us in the walk as part of the ‘Spiro Fight Club’ team. Special thanks to Marcy Fox and Jenn Legg from my work, who organized the team and made T shirts for all of us.

Next ...our bathroom renovation. Thanks to the hard work of Marc Fortier, our floor and walls are tiled and showers have been a working ever since. Woohoo!! John is able to be wheeled in on a shower chair and once again enjoy a hot shower. We still need to paint, put up mirrors and a few other things but we are so grateful and so enjoying our new bathroom. Thanks Marc! Joe Mori, Dave Leo, and others have been very helpful in doing other projects (like installing a new door, plumbing, etc) that has helped make life easier.

ALS update, after getting counsel from various people we have gone ahead and made the change from Johns Hopkins ALS clinic to the George Washington University ALS clinic. Our primary reason for this is our desire to be seen by a Neurologist and we were not able to do that at Hopkins. So on December 7th we will be taken, courtesy of the ALS van, to the GW clinic down in Washington D.C. Perhaps by now they’ll be able to give us A firm diagnosis and make us eligible for some trials. This past month had a couple of rough weeks where John was fighting a lung infection that left him especially weak. This combined with the ALS made it impossible to transport him out of bed so after a week, several phone calls and lots of heavy lifting with the family we were provided a sling lift by the ALS loan closet. It’s been such a blessing and would have cost us thousands to purchase. It’s helped us so much in transfer from bed to the chair etc....... Sometimes its difficult to plan ahead for the new equipment that we’ll need so we’re very grateful to have one now. After a trip to the doctors office and several rounds of Antibiotics he seems to be much better. We need to be especially vigilant against future lung infections as its very difficult for John to cough deeply due to loss of diaphragm and other muscles.

Thanks to John’s longtime friend Joe Mori and other friends, they have come up with the idea of “bringing church to John“ as its often too difficult to make the trip. Once a month on a Sunday evening we are treated to a wonderful time of worship. It also serves as a chance for John to visit with many of his friends he doesn’t often see. We’ll include some pictures of these times in future blogs.

One of the youth groups at our church showed up on a Sunday afternoon a few weeks ago and cleaned, organized and did yard work that we were unable to finish this fall. God has continually provided just what we need when we need it. The care and support of our friends continues to amaze us!!

This past weekend we made our traditional trek to pick out a Christmas tree. While the family picked out a tree, we ran it by John who was in the ALS transport van giving a thumbs up. After that we met at the mall where we enjoyed lunch together, followed by a couple hours of walking around the mall. It was so great to be OUT together as a family!!!

We have much to be thankful for and God has showed us his love, care and provision in new ways everyday. John says daily that regardless of his temporary condition, his greatest problem and “disease” has been taken care of by his Savior’s finished work at the cross, and we are never without hope!!

October Update

2009-10-08T08:15:00.000-07:00

We know its been a while since we gave an update so here goes.......OCTOBER UPDATE

We know its been awhile since an update. We will try and do one every couple of weeks but at minimum every month. Much is going on and we are truly overwhelmed by the care and support of our friends and family.

We saw our primary care Physician recently and discussed with him the potential for this being Lymes's disease. So many of you have suggested we check it out and believe me, we would love nothing more than to to hear that diagnosis, but so far, none of our Neurologists or Doctors have been keen on following up with the tests. Our doctor agreed to do one more blood work up and see the numbers. We are so grateful to all our caring friends who have provided doctors names, books, etc. related to this and just know that we have looked into the possibility and all the tests results have come back negative. ( Including Western Blot, CD-57, etc.... So, after this final test result is received, we need to ask that you join us in putting that possibility to rest and not provide more doctors or possible tests. Thanks so much for your understanding!!. Our biggest need at this point is to find a Neurologist to oversee our care and provide a definitive diagnosis. This will allow me to possibly participate in some clinical trials that are available.

It seems there's always a new necessary renovation project happening in the Spiro house to make things more accessible. Our next big project is the renovation of our master bathroom. This has grown increasingly more difficult or impossible to use. This renovation will allow easier access to the sink, shower, etc. Some of our good friends who are contractors are donating much of their time to do this, for which we are incredibly grateful, words cannot express. When Danny and Liz Dustin from our care group heard that we were making some minor alterations to our bathroom they very generously offered to pay for the cost of a more extensive and nicer :) renovation. We are humbled by their kindness and generosity! Work on this should begin soon and we'll post pictures of the extreme makeover! Thank you Danny and LIz!!

We'll be returning to Johns Hopkins ALS clinic at the end of November for a follow up. If we receive a confirmed diagnosis at that time, we may have access to future drug tests and trials. Our very dear friends Dr. Javed Khan and his wife Carolyn are kindly helping to counsel us in some of these areas. Again, God has brought us so many caring, and equipped friends who are stepping in to help during this time. Both practically, and otherwise. Javed noted that John didn't have an IPOD and thought that listening to hymns and other great music would feed his soul, so not long after that Javed gives John a new IPOD filled with many songs to help him keep his heart fixed on the promises of God. This will be especially helpful when he wakes up often during the middle of the ngight. Of course John will likely add Miles Davis and other jazz greats to add to the mix. Thank you Javed!!

We're thankful and gratefully relieved that this week our insurance company notified us that they are covering the full cost of our power wheelchair, minus our deductible. Woohoo!! Recently, John has had many opportunities where the Lord has allowed him to encourage others who were going through trials of their own. Some of these trials may be physical, financial, or emotional but the same God and Savior who is sustaining us is available to them.

We are also so grateful to God for our wonderful and willing children who have each stepped in to serve us when needed. It's a big change for all of us and requires much time and sacrifice, some days more than others. Amanda is taking a lighter load so she is more available to serve John at home. Joe is attending Watkins Mill High for an additional year of school and also will allow him to also be home more, rather than our original plan of sending him away to Job Corps. Gabriel is attending the University of Maryland Baltimore County (Universities at Shady Grove campus) which is keeping him close, though his time is the most limited during his 3rd year of college. We're so glad God gave us 2 strong sons who are there to literally help lift John when needed, which is more of late.

We are so very aware of God's grace and presence as we walk through this. Thank you so much for your prayers. One of our greatest challenges is that we adjust and get used to one level of difficulties , only to have to readjust and get used to a greater level of disability. Our new normal keeps shifting. As an example, the power wheelchair has made much of John's getting around so much easier, but now we are facing the challenge of transferring from the bed to the chair, from the chair to the car.......you get the idea. So..............after a few falls both in public and around the home where it required 2 -3 people to get him back in his chair or his car, we are hoping to find some able bodies servants who could occasionally help out.

Thank you so much to all our friends who have come by for visits, brought dinners, sent notes of encouragement and served us in so many ways. We could not go through this alone. It's been very humbling to be the beneficiaries of so much love and care. We are so touched by getting the weekly cards from our pastors letting us know they prayed for us, and love the weekly visits from Adam as well as some other pastors. We can't thank you enough!

Lastly, my dear friends at work have decided to join a Walk for ALS that will take place in Frederick, Md in honor of our family. We are deeply touched by their thought and initiative and; Kathy, Gabriel, Joseph and Amanda be will be joining them in the 3 mile walk. We are including the information below if you choose to contribute any money towards our goal or decide to enjoy a nice Fall walk in beautiful Frederick. It's on October 31st at 10:00 am starting in Baker Park. We will be getting T Shirts for Team Spiro so if you sign up as a part of our team, we'll get you a T shirt. You can sign up for what they have titled "Spiro fight Club". There is no pressure to gather a certain amount of money, and they make the whole thing easy for sign up. The numbers are growing so if you would like to join us, go ahead and click the link to the left. If you want to walk, you need only put down a small goal amount. Feel no pressure at all as there's no minimum amount necessary and the awareness if what is most helpful to the ALS association.

With love and Gratitude,

John and Kathy

Happy Birthday to John!

2009-09-05T08:44:00.000-07:00

Tomorrow (Sunday, the 6th) is John's birthday! He'll be serving in children's ministry (events center) tomorrow if you'd like to stop in and say hello. If you'd like to send him a birthday greeting, their email address is: jakaspiro@gmail.com.

Finally . . . an update!!

2009-08-26T13:06:00.000-07:00

Below is a letter from Kathy to all:

Well, we just returned from 3 days in Virginia Beach and had a wonderful time as a family making lots of great memories together. Going on a dolphin cruise was one highlight, another was spending the day with our longtime friends the Fortiers who came down from Williamsburg to hang with us. Here are some pictures ....

This was our first road trip since John's inability to walk and while it had its challenges, all in all it went well. We did become very aware that without our 2 very strong sons Gabriel and Joseph along, we could not have done it!! Just moving from wheelchair into bed or bath, to car, etc..has become a test of our physical and at times emotional strength. Some days are better than others, but many days find John feeling weak and unable to perform simple tasks without assistance. We have found several helpful devices to help, such as "grabbers" to pick things up off the floor have been great. While John is so very grateful for the ramp (thank you again Marc Fortier and Joe Mori!) that was installed, (pictures will be posted soon ) it is a rather scary journey every time he does it. The pitch of the ramp is a bit steep due to the small area in which it needed to be built , so he stills prefers to have someone spot him as he does it. Maybe in time it will get easier :)

So many of you have asked how he's doing or progressing and what is most challenging.
The inability or great difficulty to do so many everyday things is probably what is most discouraging for John. He has commented many times that he feels trapped by his body and likens himself to "a turtle living in the world of birds". Just getting ready for his day can require a few hours or more. When we are all going somewhere, like church for example, we need to begin the process well in advance to allow for dressing, bathroom time, getting him down the ramps to the kitchen to our side door, getting the outside ramp set, then from there he rides his power (or manual) wheelchair across our front yard to the car. Getting him from the wheelchair to the car can also be be difficult, depending on the day. It usually requires a minimum of 2 -3 people to assure he gets in properly. Again, we're so grateful for Bill Hennessey who lives with us and is often there to help John get from house to car and back; he's been such a blessing to our family in so many ways.

While this is not an easy journey and one we would not have chosen, we must tell you of the incredible faithfulness of God. Having been priviledged to be in the church for 30 years it should come as no surprise that the unending support, care and love we have been shown is simply amazing! Everything from people being so generous with their finances, sending us pizza every Thursday night (Thank you Paul and Norma) , making it possible for Amanda to go on the youth retreat, (an anonymous donor), rides offered during school, food runs by friends, notes of encouragement, and the many visits of our friends and pastors. Its been so meaningful that so many of you are praying for us!! Thank you, we feel and need your prayers! Every Friday we get a card from our wonderful pastors saying they've prayed for us. Adam Malcolm has visited many times, as well as visits from Mike Bradshaw, Mark Mitchell and Robin Boisvert. What a blessing to be the recipients of such love and care. During the 6 weeks of work where I was not being paid and our insurance was almost discontinued, we were kept afloat by so many of you that were often unaware of our situation yet felt led by the Lord to give us money. These served to increase our faith and bring us such encouragement as we were reminded that God is faithful, even when we struggle with unbelief. He has promised to supply all that we need. For the many men who have come by for visits with Starbucks drinks and other treats just to hang with John, it is so appreciated. He is so grateful for your friendships! We find that we love spending time with our family and friends, now more than ever we covet genuine fellowship as well as the need for laughter. It definately helps to lighten our load!!. Which brings me to my friends; Tracy, Rita, Susan, Terry, Martha, the crazy ladies...Carolyn, Nora and Susan as well as Marcy and Sarah from my work.........., the way you look out for me, care for me, listen to me and support me has been nothing short of amazing! As I sometimes feel stretched beyond measure you are always there for me. THANK YOU!!
We will most likely being seeing an ALS clinic doctor at Johns Hopkins soon to get a "confirmed" diagnosis. This will then allow John to possibly participate in some clincal trials. To be honest, we needed a break from testing, doctors and hospitals, so we took the remainder of the summer off. We'll keep you posted!

As for prayer needs:
That John will continue to seek God and His grace every day when met with new perplexing day challenges.
That Kathy will feel God's encouragement and strength when she faces the challenges of full time work and her desire to be a godly wife and mother.
God's wisdom and guidance for any medical treatments or therapies to pursue.
Daily strength for Gabriel, Joseph, and Amanda as they pursue school and career while dealing with the set of circumstances.

Cleaning Help

2009-08-06T16:56:00.000-07:00

I've added another "help" option to the left. If anyone would like to serve them in this way - perhaps 1x/month or whatever works for you - just press the button on the left.
Thanks again!

Ramps Installed!

2009-08-06T16:06:00.000-07:00

Thanks to the kind help from Marc Fortier and Joe Mori, the Spiros now have a ramp inside their house, making it possible for John to get to the kitchen/lower level on his own! Thanks also to Danny Dustin for providing the wood. They will begin work on the outside ramp that Drew kindly offered after Reid's passing. They will install it on the deck and then will need guys to help build the ramp to the driveway. We will keep people posted as to when that will occur.
Thanks for praying for Kathy's job. It looks like her job will continue, insurance will continue and all money owed for the past 5 weeks will be paid soon. That is a huge answer to prayer, especially the insurance. Please continue to pray to this end!!
Harry Gottlieb and Michael Thompson brought coffee and bagels on Saturday and had a great visit with John. Visits are always welcome but it's recommended you call John's cell to make sure he's up to it on that particular day - 301-437-1510.
Lastly, as you pray, please continue to pray for grace as they face all of these adjustments to their home and life.
Kathy has expressed numerous times how grateful she is for your prayers and care. Thank you!

Caring for the Spiros

2009-07-31T14:14:00.000-07:00

Welcome to the Spiro Family Blog. After talking about how to best care for John and Kathy and their family, a group of us have thought keeping this blog would be the easiest way for friends and family to keep up with their needs (prayer and practical). I will be updating the blog as needs arise as well as to inform everyone of present prayer requests that I hear from John or Kathy. Please feel free to leave comments and encouragement for John and Kathy in the comment section.

Prayer Requests:

that the insurance company would cover the cost of John's new power wheel chair
God's continue provision and insurance coverage through Kathy's job
wisdom and guidance about how to make their house more accessible for John
slow the progression of limited mobility for John
Kathy's work schedule is up for re-structuring - pray for a schedule that would best serve her family
pray for increased faith and grace as John and Kathy walk this road

Practical Needs:

Meals - Rita has offered to organize meals for their family. If you are available to serve them in this way, please click the link to the left.
Rides - Terry is organizing rides for Amanda. If this is an area you could help with at some point, please click on the link to the left.