A Gift of Understanding

I had the opportunity to attend a conference last weekend.  It was 3 very full days of workshops and lectures. I heard some wonderful speakers and took a lot in. Yet the one thing that left a lasting impression on me,  stood out over all the professional speakers, was a conversation I had with a beautiful 17 year old girl.

We just finished dinner, and were waiting for our last speaker to take the stage.  A young girl came over and quietly sat down at the table next to me. We sat there for a few minutes in silence when I said Hi. She looked up and smiled and we started to talk.  We made small talk for a few minutes then things got a little deeper. She started to share with me her excitement in the fact that she would be leaving for college in 2 weeks, a day she never thought would happen.  She  proceeded to share very openly what it has been like to live with  severe depression and anxiety for the past 6 years. She was very thankful that in the last year it seemed to have lifted significantly.  She said , I do still have some bad days, yet now, they don't defeat me like they used to.  I am able to get through them  knowing they won't last. She said the hardest part has been the fact that no one, neither family nor friends was able to truly understand what she was feeling in those deepest depressing times. She felt very alone yet knew God was and continues to be with her. She holds tight to his promises in the hard days. The next words took me by surprise. With such joy and peace she said " I know what it is like to feel alone, believing that no one understands. If I can help just one other person in the midst of my struggle  to know they are not alone,  I believe my purpose for going through all this will be fulfilled!"  My eyes filled with tears. I realized what a beautiful gift she has to give to others, the gift of truly understanding what they might be going through.

"In our suffering we often ask the question Why? Why, because it is not suffering that destroys a person, it is suffering without a purpose ."  Job; The wisdom of the Cross. Christopher Ash

There are many reasons why God might allow trials and suffering in our life . I do know one reason is that suffering prepares us to be able to come along side others who are struggling.  It brings us to a place of  deep compassion, and mercy which allows us to say with complete honesty, " I get it, I understand!"  Sometimes that is all they need to know, they are not alone and that someone truly understands.  God has purpose in our trials. Once in a while he lets us SEE that purpose.  That girl at such a young age has suffered much. Although still struggling, she is seeking to minister to others. Offering them the gift that was given to her. The gift of hope, and joy she has found through Christ! The gift of understanding. What an encouragement she was to me!

A wave of grief and a moment of joy.

I don’t spend a lot of time thinking about what Ryan can and can’t do. In fact I try very hard not to think about it. Once in a while though, it sneaks up out of the blue and hits me. It  takes me by surprise ,then  grief overcomes me. Last night was one of those times. I was sitting on the couch, minding my own business when my neighbors’ son pulled up into their driveway. I looked out the window and saw that he had a few friends with him. They piled  out and started chasing each other around. He looked so tall, so strong, and it hit me, reality.  He is the same age of Ryan. Their birthdays are only a few days apart. They are both 17, soon to be seniors in high school. I sat and watch him for a few minutes, and then sorrow filled my heart. That is what my son should be doing! That is what he would be doing if it wasn’t for the Duchennes. Reality.

It is times like those that bring to light the reality of what Ryan has lost. At this point, the list for what he cannot do has far exceeded what he can do. It is getting harder and harder for him to have any sense of independence. Today I was watching Ryan as he drove his chair into his room. He reach down to the stand alone air-conditioner, turned it on, then a few minutes later he went back and turned the temperature down. I got to thinking, he does this quite frequently throughout the day. I wanted to cry as I thought about it, watching him do this simple task seemed to bring him so much joy. An air-conditioner? YES! Why? Well, Ryan can control it. He can turn it on and off, he doesn’t have to wait or ask for help, this is one thing he can do, independently!  It may seem like a little thing, it isn’t driving a car like my neighbors son, but it IS something Ryan CAN do and I WILL take it, as small as it might seem, and celebrate it!

Sometimes it is a little thing that can bring a wave of grief, and sometimes it can bring about a moment of  joy. For today I am choosing to see the joy in a little thing that to most  probably seems minuet, but to us we will celebrate it as a small victory of independence for Ryan! 

Courage

cour·age

Strength in the face of pain or grief.

In the past few weeks, the word courage and courageous have been attached to a very well-known celebrity because of his choice to mutilate his body. He is being celebrated and being called courageous for trying to become something he was never meant to be. I am not trying to start a debate on whether or not he should or shouldn’t. Just stating that what he is doing is not my idea of courage. Let me share with you what I think courage looks like in everyday life!

A few weeks ago I was driving home when I noticed a women in a power wheel chair on the side of the road. As I drove past, I quickly scoped out the situation. She was being pushed by a teenage boy and I could see how much he was struggling to push her through the dirt and gravel. It took me all of 30 seconds to do a u-turn and head back down the road to where they were. As I got out of the van and walked toward them I immediately knew, from experience, what happened.  I asked her if her battery died on her wheelchair. The women looked up at me and in a laughing voice said YES! I told them I had a wheelchair van and asked if I could give them a ride home. (It was a rare occasion that I didn’t have Ryan with me). The teenager looked relieved and the women, who I believe had cerebral palsy, said in very strained, broken language, that it would be wonderful!

So began the fun of getting the chair up the ramp into the van. You have no idea how hard it is to push these power chairs. They are 350 +lbs. So the teenager and I struggled, pushing from too high up and about tipped her forward. We stopped and I asked her if she had her seat belt on, which she laughingly said, ALWAYS! We once again started to push, this time practically on our knees to get her up inside the van and then making sure she was securely fastened.

It was about 2 miles to their house and I asked her how she managed to run her chair out of battery. She said she worked at the mall and must have driven around a little too much!  I found out that she works at the mall, and that she drives her chair that 2 miles to catch the bus to get to work.  As we pulled up at her house I couldn’t help but notice she had a very long steep driveway, great this should be fun! As we very carefully backed her out of the van, making sure not to let her chair go to fast, another woman from inside the house came out to help. We did manage to get her up the driveway and safely into the house. She thanked me and I got into the van and drove off.

 I couldn’t help but think about her all the way home. I wanted to cry, well I did cry. I was so very thankful that I was able to help her.  I was thankful that I was driving down the road at just the right time!  I thought about her and how she never stopped smiling, it didn’t even seem to rattle her, I would have been in tears, bawling, if it was me!  I was also encouraged as she shared a glimpse of her life with me, that she had a job and was able to catch the bus to work, she found a way to have some sense of independence! Now THAT is what courage looks like!

I think of her when I hear the word courage, and many others.  I see courage every morning in my son Ryan’s face when I go into his room. He very rarely complains as I roll him from side to side, dressing him, and then lifting him into his wheelchair. He knows what his future hold, he can’t change that, yet he faces each day with courage and a peaceful spirit!
 I see courage when I see my friends teenage daughter, who was paralyzed in a gymnastic accident go back into that same gym, whenever she can, to help coach and encourage her fellow teammates.
 I see courage when I see another friend’s young daughter, fight a rare disease that affects her liver. This disease causing among other things, uncontrolled itching. I see her making jokes about her itching, happily helping her mom clean house, and even fight with her little brother!
 I see courage as I have watched my friend, who lost her 3 young daughters in an accident, fight for the strength and courage to get out of bed every morning and face each difficult day.
 I see courage in my friend as she is losing her mom to Alzheimer’s. Each time she sees her, she is losing more and more of the mom she once knew, yet she courageously never gives up seeking to find new ways to connect with her mom.
 I see courage in many parents as they are dealing with children with some very hard circumstance. They hug and wipe away tears from their children’s face, answering hard questions, comforting, encouraging, reassuring. They courageously manage to hold it together only long enough to be able to lock themselves in their room and let the tears flow!

 These people cannot change their circumstances but each one, in their own unique way, are finding ways to face some very difficult circumstances with courage! I am not saying these battles are easy or that they don’t get discouraged yet they have found a way, in spite of the difficulties, to courageous live each day to the fullest!

We all know people who have and continue to face challenges. I have only mentioned a few yet I know many more. Who in your life would you say is living life courageously? Please tell me, who do you think of when you hear the word courage? Please share their story and even a picture! Let’s be reminded what courage really is and what it looks like in real life!

A little bit of happiness

As time goes on I find myself wishing mom was here to share the little everyday things. Especially now that dad is on the road , seems like a big piece is missing from our lives.

After mom died my dad spent a few weeks going through moms stuff. He had things for us to look through to see if we wanted. One of those items was a black fanny pack my mom used  at the gym and when she would go on walks with my dad. My dad asked me if I wanted it and I said no, I probably would never use it. So that was that. 

Fast forward to now, I am going to be doing a 5 K color run/walk on Saturday and I was telling Ryan I wished I would have kept that fanny pack. It would have been perfect for Saturday, it was small and was just the right size to carry a few items in. Today Ryan and I were at Fort Lewis for an appointment. After our appointment  I decided to stop in at the thrift store on Post to see if I could find something similar for a good price. Ryan stayed in the van and I went in to do a quick search . Along the wall there was a bunch of purses. I walked down the isle looking and what do I see hanging on a hook?  My moms fanny pack!  I was so excited!!  I knew my dad had donated some items to the thrift store but didn't realize that it was one of the items. Plus even it I  had remembered, what are the odds of it still being there? I could hardly contain myself as I bought it and went out to the van.  I took it out of the bag and said " Ryan.... look what I found." He said, " MOM, is that grandmas?!?!" I said, " YES!!! " He said wow, that's pretty cool!  ". I know it is just a bag but to me it was a little bit of happiness, a blessing, an unexpected moment to remember my mom, and to feel her close to me in the little things of life.  I know if she was here she would have thought it was cool, and I know she would be right there along side me as I do the 5K walk, and  I guess in a way she will be!. I am thankful that God brings those little moments to our lives, the unexpected little moments seem to bring the most joy.   Love you mom! 

Facing the Giant

We find ourselves, once again, facing changes. When I got the call I hung up the phone, filed away what I had just heard in the back of my mind and pretended that nothing new was happening. Denial isn't so bad; I was not ready to tackle this new Hill. Now, almost a week later, I realize it is time to face the giant. So I pull out the information from my mind and start plotting how we are going to get through this one. I have to tell Ryan, knowing how he is going to respond, wanting to soften the information and pretend it doesn't mean anything. Convincing him that it is all perfectly normal, pretending for his sake, that it is all okay. 

A few weeks ago Ryan had a sleep study done. We got the results back last week. The news was not what I wanted to hear but to be honest with you, I wasn't surprised. As much as I wish we would be unique in this disease, Ryan is following along the course, just as the textbooks predict.  Ryan’s results showed that he has what is called Hypoventilation. Hypoventilation is too shallow or too slow breathing, which does not meet the needs of the body. If a person hypoventilates, the body’s carbon dioxide levels rises. This causes a buildup of acid and is an inevitable consequence of Duchenne muscular dystrophy (DMD), usually preceding daytime respiratory failure. It also showed that Ryan was having intermittent sleep apnea. This is all due to the decrease of lung function.   

Once again, we have a mountain to climb.  This mountain goes beyond just the physical need for a bi-pap machine; it involves a hurdle of emotions attached to a deeper mean for Ryan. Facing the giant that has been in the back of our minds for years, knowing one day it would show. Let me start a few years ago.

Ryan first attended MDA summer camp when he was around 8 years old. He didn't like it and I had to pick him up early. The following year we talked him into trying it again, and like the previous year didn't make it more than a few days before wanting to come home. I didn’t understand why. It was an environment built around his needs and the needs of other with neuromuscular disease. It was supposed to be a place where he didn't feel out of place, where everything was inclusive. It took a long time before Ryan finally opened up to what was truly bothering him about camp. It was during bedtime that he noticed older boys having to be hooked up to a machine to sleep. He didn't understand it and was afraid. He said, mom they must not have the same disease that I have because I don't need that. Then he would go on to say that maybe his disease wasn't as bad as theirs, because he didn’t need a machine to help him breath.  We tried to explain to him the best we could, not wanting to go into too much detail of what his future would hold. Knowing there were details that his young mind didn't need to know.  So over the past few years we have slowly started to introduce the fact that the bi-pap machine is very helpful, and as gently as we could, let him know that there might come a time where he would in fact need to use one as well. He never wanted to talk about it; he didn't want to accept the fact. Whenever the doctors would bring it up, Ryan would shut down and ignore them. In his mind, as long as he didn't need the machine then he wasn't as bad off as other boys with Duchennes. So now we are forced to except that this is now going to be part of Ryan’s life. We have to help him not only get used to the physical discomfort of the bi-pap, air being forced in and then pulling his breath out, but that in deed we are to the point of needing this and all the meaning behind that. To Ryan it signifies another loss, facing reality that indeed this disease has changed his life again, facing the giant that he has tried for years to ignore.   For us it is once again grieving another loss. Helping Ryan to be okay with it, pretending we are okay, yet knowing in our hearts that we have to grieve yet another loss in Ryan’s life. We have to accept it, grieve it, so we can find our new normal again

National Duchennes Awareness day. Please help to give our boys the gift of time.

Today, June 8^th, is National Duchennes Muscular Dystrophy Awareness day.  

Duchennes, or DMD affects 1 in 3,500 boys. It can come into any family. It knows no boundaries and is non-discriminate. It does not care your race, where you live, or if you have a family history or not, it can happen to any family!  

It happened to us.  Duchennes entered into our family when Ryan was 5 yrs old.  We have no family history of it and we were taken completely by surprised.  Although the diagnosis its self is probably one of the hardest things you will ever  hear, when you are told  that there is nothing you can do to help your son makes it one of the worse things you will ever hear.  Currently there is no effective treatment and no cure. Duchennes is 100% fatal. Your son is given a death sentence with this diagnosis. That is why today is so important for those of us that have boys in our life that are dealing with this.  We need people to be aware of this disease, once awareness happens then the community can help us to push to find a safe, effective treatment or cure soon.  Soon is the big word here. We don’t have time on our side; you see DMD causes our boys to die at a young age. Young age meaning most don’t live to see their 20s. Ryan is almost 16 yrs. old. So thanks to DMD Ryan’s life is ¾ of the way done. Can you imagine that? That is the reality of what we are dealing with.  I won’t even get into the details of what he physically has and will go through in his short life thanks to DMD.  

Time, we don’t have the luxury of time.  So for this one day, would you please post this on your time line? As I said, DMD parents feel helpless, but one thing we can do is push that DMD awareness happen. As we all know in our world, those things that have the most press and exposure are the things that get the most attention. We are hoping that more exposure will mean more pushing for research, which will hopefully one day SOON bring hope to DMD families, to Ryan . 

A change in Perspective

I was recently asked to share an experience in trials, and how they are sometimes used to prepare us. My first reaction was no thank you! It took me almost a week and lots of prayer before I was willing to even allow myself to go back, to remember a very difficult time in my life. It was something I had not thought of in a long time and yet as I began to remember, God allowed me to see it differently, he transformed my perspective and allowed me to see that there was good that came from it. 

I went back to a time,   12 years ago while living in Alaska that  I became very sick.  The doctors had no idea what was wrong, I had every test imaginable done and yet there were no answers. Each day I would wake up feeling the same, awful.  I was a mom of 4 small children and I could barely take care of myself, let alone my family.  My parents were living in Florida at that time. I remember calling my mom, crying telling her I didn't know how I was going to get through the day. I know my mom felt as helpless as I did but she encourage me to  turn to God, look to him for my strength, be okay with the not knowing or understanding the why. She would make me say out loud over and over, that I do believe in you God, I do believe you are who you say you are, I do believe you are with me and will get me through this, that I trusted him to give me what I needed to get through the day.   Slowly over almost a 2 year period, I started to feel better. It was during this time that I became  dependent on God in a way that I never had in my life.  I had to come to a point of total trust in him to get through it and to have peace.   It was by far one of the hardest thing I have personally gone through. I did not care about the why; I just wanted to feel better.  At that time, I honestly could not see good in any of it.  I was just thankful when I started to slowly feel better.

It was around 1 year later that Ryan, who was 5 years old at the time was diagnosed with Duchennes Muscular Dystrophy.  We were told about his disease over the phone and told that there was no treatment or cure, that there was nothing we could do to stop this. I felt that familiar feeling of helplessness overcome me.  As time went on and I slowly started to process and understand what it all meant,  I once again had to turn to God, to tell him I did not understand the why, but that I knew he was there, and that I trusted him.  I could feel God come along side me. He was giving me peace in a very difficult time. It was very fresh in my mind how he was with me during my illness and having had a little time to look back, I could see specific ways he was there.  He reminded me of that now, how he helped me through each day. I knew that no matter how difficult things may get he would not leave us to go through it alone. I knew that because I had experienced it. God prepared me for what was to come with Ryan.

I can honestly say that I would have given anything not to have had to gone through what happened in Alaska, but looking back, I can now see that God has used that time in a positive way, to prepare me, for what we are going  through with  Ryan. Those things and what we have gone through with Ryan  helped to prepare me, to be able to come along side my mom , in her battle with cancer  in a way that I would never had been able to otherwise.  For that I am thankful. 

Trials, difficulties, we all go through them. What is the purpose, can any good come from them?    As you are going through a hard time, you may feel very alone.  You may not understand the why. Let go of it,  you don't have to understand just Surrender to God in total trust, allow him to change you. There might be a time when you get to  the other side, it could even be years later, that something will happen, a circumstance will come up and God will be able to use you in a way , that he may never have been able to if you had not gone through that particular difficulty.

This is the verse that my mom sent me in Alaska. I have held onto this promise from God for over 12 years and I will continue to believe it.

Psalm 27:13  "I am still confident(hope) of this: I WILL (expect) see the goodness (answer) of the Lord in the land of the living. WAIT for the Lord; take heart and wait for the Lord"....HOPE..EXPECT..ANSWER..WAIT.

My Chains are Gone!

My Chains are Gone.

As I sat at moms memorial service, listening to the song “Amazing Grace/My Chains are Gone”, I was overcome by strong feelings of Joy and Peace. I missed my mom terribly and was confused to be feeling joy in the midst of sorrow,  joy at such a time as this? Joy in Sorrow, How can that be?

 The last few weeks of mom’s life were very difficult, full of pain and struggle.  While she was in the hospital I stayed with her most of the nights, watching over her, not wanting her to be alone. I awoke one morning after having a dream.  In my dream there was someone sitting in a chair looking out as if they were watching, waiting, and full of anticipation. In my dream there was also a little girl, she kept trying to sit down but was too excited.  The little girl was so full of joy and excitement she couldn't help but to keep jumping up and twirling around.  Everything about her was happiness and joy!  We are told in Hebrews that we have a Great Cloud of witnesses cheering us on. I couldn't help but think that those in my dream were those  in heaven, looking down on my mom, watching, waiting, knowing that something exciting was about to happen. I could feel their joy; joy in knowing that my mom’s battle was almost over. They knew they would soon be welcoming her into heaven with them.   I shared that dream with my mom. I told her she would not be alone, that her arrival was much anticipated in heaven.

That day at her memorial, as I listened to the words, “my chains are gone, I've been set free”   That dream came to mind, I felt the joy of those in my dream , joy and peace know that my mom is now with them in heaven, she has been set free. Thank you God for giving me that dream, so I can now picture her as that little girl. She is free, twirling around, full of happiness and Joy.  Surrounded by those she loves, she is now part of that Great cloud of witnesses, continuing to do what she has always done, cheering us on!

Mary Beth Huffman

Born in Terre Haute, Indiana May 7, 1943. Mary Beth Van Gilder began her journey through life. Mary was the youngest daughter of Fred and Ethel Van Gilder. Her early years were spent with her mom who was a traveling school teacher, living in a variety of hotels and boarding houses. Little did she know that this nomadic life was a foreshadowing of her lifestyle in later years. Although she  loved being with her mom and traveling around, in order to maintain some stability for her teen years, she moved in with her Grandmother Harrite and Grandfather Oscar. She loved her grandparents very much, they became like her second parents.

Mary was very outgoing in high school. She showed off her spunky personality as a majorette in the marching band as well as a Jr. Attendant for the football queen during homecoming. She met the love of her life Charles Huffman when she was only 15 yrs. old. Chuck often joked that he fell instantly in love with Mary but had to wait for her to grow up so he could date her. He didn't wait long and they were married in 1960 when Mary was 17 yrs. old. Mary showed us in her marriage to Chuck what a true helpmate was. Her love and support of Chuck was genuine and steadfast. She knew when to come alongside him, and when to step in to keep him in line. Chuck took excellent care of Mary in their 52 years of marriage, loved and adored her to all the ends of the earth.

The earlier years of traveling with her mother helped prepare Mary for life as a military wife for 20 years and a Pastors wife of 24 years. Mary became a first time mother in 1961 with the birth of her first born, Beth, shortly followed by Carol’s arrival in 1962 and then Donna in 1964, her last bundle of Joy. Mary loved life and was always up for an adventure. She loved people, and had a gift of knowing when someone needed a listening ear, a shoulder to cry on, or just a big hug. Mary was lovingly nick named "the card lady". A big part of her ministry was sending cards. She touched the hearts of many with an uncanny ability to be able to choose just the right card, in perfect timing that brought words of blessing and encouragement to the recipient.

Mary loved spending time with her eight grandchildren and she was more than excited this past year with the arrival of her first great-grand daughter.  She prayed daily for them and loved them with all her heart. She left a lasting impression on each one of them.

The last few years of her life showed Marys’ strength and determination more than at any other time of her life. As she battled cancer she amazed us with her continued love of people, stopping often to ask others in the hospital if they were okay and if she could pray with them. Even though she herself was battling she took time to make sure those around her were cared for, including the doctors. She let Jesus love shine through her to those she came in contact with.

Now looking back on Mary’s life journey, we can confidently say she has fought the good fight, finished the race, and kept the faith.  Now we know she has received the crown of righteousness that the Lord will award to her on that day.

A little glimpse of my moms heart.

Wanted to share just a little glimpse of my mom heart.
She is currently at an in-hospital palliative  room. This past week she was having a really bad day so we thought a roll around the hospital might help to lift her spirits. Our nice, young nurse Katy got my mom situated in a wheelchair along with her iv pole and oxygen tank headed off down the hall. My nephew Justin and sister Beth walked behind her  pulling her extra equipment along. My mom was very quiet as they walked through the hospital floor, not saying a word. When they approached the nurses station my mom made them stop There was an older male nurse walking by, she reached out to touch his arm stopping him.  His name is Scott and while he had not been one of her nurses this time around he did help care for her on one of her previous visits to the hospital.  My mom took his hand and very quietly wanted to thank him for the kindness, compassion and wonderful care that he showed to her when she was in there a few months ago.  It took him a minute to recognize my mom, smiled and softly said thank you.  Then the parade of equipment and my mom continued down the hallway and back to her room.
A few days later Scott was moms assigned nurse. She was having a difficult time and was struggling. Scott came in to help make her comfortable. She started to apologize to him for being so much work, he took her hand and said , Mrs Huffman, it is my pleasure to care for you,  he proceeded to thank her for taking the time the other day to stop him in the hallway. He had tears in his eyes when he told her that she would never know how much that meant to him,  that it was the nicest thing anyone had ever said to him since he started working in the hospital.
My mom, in the most difficult circumstance, stopped for a moment to minister to that nurse. Thank you God for once again allowing me to see this special moment, a reminder of who my mom is . I truly believe one of our jobs here on earth is to be the hands and feet of Jesus. For people to be able to see Jesus in us, and that is what my mom has done and continues to do even now.

My mom Mary and her grandson Justin. Getting ready for a walk.