Wednesday, August 7, 2013

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! 

Thursday, June 20, 2013

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

Saturday, June 8, 2013

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

Today, June 8th, 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 . 

Friday, May 24, 2013

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.

Wednesday, March 20, 2013

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!

Sunday, March 17, 2013

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.

Sunday, March 10, 2013

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.

Sunday, February 3, 2013

A New Hope

What is that fine line between maintaining hope and accepting reality?  Why is hope important? How do you help someone accept their circumstance without taking away their hope?

  It has been difficult dealing with my mom's illness. Reality has set in that she will not be with us for much longer. With this reality comes the balance between being open, honest and helping her to accept this. The difficulty is helping her to live whatever time she has left without being in despair.

 We struggle between helping her to maintain hope and yet facing reality. Knowing that she needs to accept what is to come so she can have peace.   While talking  with my dad about this I started thinking about Hope.  Are we truly looking at what it means to have hope, what does hope really mean?  So I looked up the meaning of the word hope and this is what i found.
Hope is the emotional  state which promotes the belief in a positive outcome related to events and circumstances in one's life. Hope is the "feeling that what is wanted can be had or that events will turn out for the best" or the act of "look[ing] forward to something with desire and reasonable confidence" or "feel[ing] that something desired may happen"
So what does hope mean? Having a positive outcome to events or circumstances.  How do we help my mom to see the positive outcome to her circumstances?    For the past 6 1/2 years her hope has been in positive outcomes to her treatments, medications, doctors appointments, lab results ect. How do we shift that thinking past cancer and what her life has been to a new hope of what her future life will be . How do we help her to change her thinking , to look forward with desire and reasonable confidence to her future.
  My mom knows she will be in heaven and that death is not the end, it is only the end of this chapter. So we try helping her to re-focus  hope,  it is no longer in medication, treatments, or healing, even healing is temporary in this world. We encourage her to focus her hope on those things that are eternal, that will last forever.  Please pray with us that God will help her to see her new hope, hope that comes with a positive outcome;  Titus 1:2" In hope of eternal life, which God, who never lies, promised before the ages began" . Our hope is not on a thing, a teatment or a doctor, it is not our life here on earth, our hope is GOD. Trusting  and knowing that our eternity will be with him in heaven , knowing, looking forward to heaven where  there will be no more pain, sickness, death, sadness, cancer, or tears!  Giving her peace in knowing she has lived her life and been a testimony to God and that it has all been the road to her future hope.
  Ps 39:7 And now, O Lord, for what do I wait? My hope is in you.

Monday, January 14, 2013

Great-Grandma Mary meets Nadalie!

My mom's first great-grand baby was born in Florida a few months ago. It was my parents goal to be able to travel to Florida to meet baby Nadalie, but with my mom's health it just wasn't possible. When it became a reality that she wasn't up for traveling, my Nephew Nick and his wife Erica decided to bring Nadalie to mom! They flew all the way from Florida so my mom could meet her great-grand baby! Oh, and great-grandpa Chuck too!

My mom was in bed when they arrived but got up when she heard them coming in. We had her sit on the couch and Nick handed Nadalie to my mom to hold. All four of us immediately whipped out our cameras and started taking pictures. Poor Nadalie's eyes got huge as we were all standing around her calling her name, trying to get her to smile. It was only a few minutes before fatigue set in and my mom had to go back to bed.

Later that night,  we were all sitting around talking;  Nadalie was happily laying on her blanket on the floor when suddenly, my mom woke up and came out into the room. She didn't say anything to anyone but walked over to where Nadalie was and sat down on the floor beside her. She talked with Nadalie, eventually producing a big wide grin on little Nadalie's face. I think time stood still, we all stopped talking, in fact I think we were all holding our breath watching this interaction between great-grandma and great-grand daughter. I had a million thoughts and emotions going through my mind , I could only imagine what an emotional struggle it was for my mom as well. It only lasted a few minutes before my mom asked Nick to help her up off the floor. She got up and quietly went back to bed. I walked back with her to her bed and covered her up. It had taken all her strength to do what she just did but it was something that was very important to her .

 I pray that Nadalie will remember her great-grandma Mary. I want her to know how much my mom loved her and had prayed for her even before she was born!  I am so thankful that once again I was able to be a part of a very special moment with my mom, a time that we once again could see joy in the midst of such difficulties.

Friday, January 4, 2013

Just 45 minutes can mean so much

Forty Five minutes. I had my mom back for 45 minutes!
 My mom has been experiencing a lot of pain and nausea due to cancer. The battle has been ongoing  for over 6 years but the past year, especially the last few months have been very difficult. This past week  the decision was made to check her into an inpatient hospice center, just for a few days to help to see if they can get the medications better regulated to get her feeling a little better.
 Last night I was with her when she woke up. She got up out of bed , came over to where I was sitting and sat down with me. She asked me what I was eating and ate a little. She sat there with me for awhile chatting, walked around the room , down the hall stopping  to talk with a nurse and even joked around with her. She walked for a few minutes and then back to her room. She smiled at me and asked how the boys were doing, she smiled the first real smile I have seen in so long! She seemed to be totally free of pain for these 45 minutes. I was so happy just watching her, I was in tears thinking THIS is my mom.  She was awake and coherent for about  45 minutes and then needed to go back to bed. She was given another dose of medicine and fell back asleep. I was in tears thinking about what I just saw. I got to SEE my mom for 45 minutes and I am SO thankful! My mom is still there hiding behind the pain, and medicine but she is still there!! Cancer sucks but It does not take away who she is or her spirit ! Thank you God for allowing me to see her, to be able to have a glimpse of her true self to know that SHE is still there. I can't even express how much that meant to me, just 45 minutes!