When my very dear friend passed away suddenly a few weeks ago, another sweet friend who always has the right words to say gave me a simple little wooden plaque with the word “hope” inscribed on it. She had tied it with a pink satin ribbon which I have chosen to leave on. The soft, feminine drape of this ribbon reminds me of the female friendship I have not only lost, but also enjoyed for too brief a time. And yet this small word, “hope”, stares at me from the hard, raw wood of this piece, begging me to consider what it means.
I’ve pondered this word now for weeks. It’s small yet so powerful. When I consider death, hope to me does not mean I hope for the best that perhaps my friend has gone on to a better place. Not at all. Although I continue to grieve the loss of this beautiful lady’s presence in my life and miss her beyond words, my hope is a confident certainty that she IS with her Savior and that I know without a doubt that I will see her again one day.
Hope may mean different things to different people. As an EDS Mama, I would not have been able to continue on without hope. How could a mother possibly watch her child struggle on so many different levels without hope? How do you bear that the child whom you carried lives in constant pain for years with no relief in sight? How do you manage to care for the rest of your family when you are exhausted from being a full time caregiver and have nothing else to give? How do you go to doctor after doctor knowing something is wrong with your child but nobody can seem to help you? Even after a diagnosis, how do you find any joy in life when nobody can fix things enough for your child that each day is not still a struggle?
The answer, my friend, is because of hope. But what matters is the object of your hope. Hope in anything else besides God alone will disappoint you and make you feel hopeless. Some might hope in their own strength, hope in a doctor or a specific treatment, hope for a good response from others, or simply hope for the best. Some may find it safer to have no hope at all and just experience life for what each moment in time presents. Did you know the bible refers to God as the God of hope? Romans 15:13 NIV says, “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” In what are you hoping? Are you feeling hopeless? I pray that God would restore your hope as you focus on the God of hope.
Am I convinced?
One of my dearest friends passed away almost two weeks ago. This friend helped me to heal as an EDS Mama. I thought that I needed to connect with other EDS Mamas to heal, but I learned that God can use different trials in life to teach the same lessons. We developed a deep friendship even though our trials were not the same. She taught me to take care of myself and taught me practical ways I could get a break from the load I was carrying. One of her favorite ways was to simply go and see a movie without discussing our burdens. I miss her terribly and I feel frozen in time. I have not felt much interest in Facebook or my blog. Here I have a verse on my blog that says I AM CONVINCED! It says "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39 NIV. Do I really believe that? A week before she suddenly passed away I had mailed out the first of four packages to moms and their EDS daughters, a mission to which I felt called. Now, I'm finding it difficult to move on in a sense. I know my friend would not be happy with me. She would want me to continue to make a difference in the lives of others. I know that what I am feeling is grief and that to heal I have to allow myself to embrace those feelings in order to move forward.
I am trying to read my bible and ask God to heal me. I have been reading on a website called www.shereadstruth.com in their “Mourning and Dancing” series. Today I read a verse to which I cling. Revelation 21:4-5 NIV says “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, 'Behold, I am making all things new.' Also he said, 'Write this down, for these words are trustworthy and true.'" I thought I had seen my share of life and death as an EDS Mama, but God is teaching me that I have not. He’s asking me to sacrifice more that I hold dear. These verses in Revelation comfort me as I have cried bucketfuls since my friend died. It is hard for me to imagine no more tears and no more pain because in this lifetime, there is plenty of both! But there is coming a day such as this. God is making all things new and as a believer in Christ, I get to experience that one day just like my friend has.
The pain I feel from her loss is indescribable. But my God knows me intimately and sees every tear I shed. When my EDS daughter was facing death’s door, I was convinced. God is reminding me what that feels like in a different scenario. Don't get me wrong...I AM CONVINCED. Nothing can separate me or you from God's love. It is deeper and wider than the ocean. But at the same time that we believe these truths, our human hearts can hurt. I'm trying to take more time picturing what my dear friend must be enjoying in Heaven these days. I hope to be posting to my blog shortly and I know that God will continue the work in me that He began. I would appreciate your prayers as I continue to mourn and learn to dance again and allow God to make something new.
As we drove into Petoskey State Park, the sky turned an ominous black. Just as I parked and stepped outside my truck, the wind whipped fiercely and raindrops began to fall. Mothers hurried their children along with their sand shovels from the beach to the safety of their cars. I smiled as one little boy’s shovel still had the price tag hanging from it as if it was purchased just for today. I questioned why I had purchased the $11 permit to even enter the park this day but today was supposed to be the day my son and I had planned to spend at Lake Michigan. Hoping to salvage our outing, we turned around and drove out, deciding to window shop in Petoskey until the storm had passed.
Apparently everybody else had the same plan. Driving in town was utter chaos. We parked our truck and paid our fee at the meter. It was raining so hard that I decided to leave my purse in the car, since I had packed neither an umbrella nor a coat because the weather report had said it would reach ninety degrees today. We walked through the rain, going in and out of shops, shivering the entire time from the irritating wind that tried to wreck our adventure. Eventually, the rain let up and so we headed back to the beach.
Once we were back at the park, we gathered our towels, our bag full of sunscreen (we are fair skinned and blue-eyed), and our water bottles and eagerly walked toward our spot in the sand. My son quickly disappeared with his cousin to hunt for Petoskey stones which gave me a little window to walk along the beach by myself. The storm had passed by now and the sun was peeking through the clouds, but the waves were strong and made their presence known. I watched families swimming in the lake, parents in chairs on the beach keeping a careful eye on their little ones, and couples hand in hand walking past me.
I came to a little area where no one was around and just stood there for a moment watching and listening to the waves. I took a deep breath in as the wind blew against my face. And I felt God’s presence. It was a moment with me and the Creator where I was fully aware of His power. Everything in that moment, the wind, the waves, the sand, the clouds, the stones, and the sun all pointed to Him and I wanted to stay there forever. Peace washed over me and every care disappeared in His presence.
I took some pictures hoping to use them in my blog. I walked some more, pondering what I would say about this moment. How could I incorporate the behavior of a wave, how it came in with a force, washed in stones, and flattened the sand to a perfect canvas on its exit? And yet, I felt so at home in this experience that I realized I had nothing to add to the magnificence of God. My journey as an EDS Mama faded away and the peace that I felt left me longing for more, realizing that perhaps it might be similar to what it feels like to finally walk into the eternal presence of God.
Eventually my son returned and we spent the last hour wading in the water, scooping up piles of stones and actually discovering some Petoskey stones. The storm had passed by now, but still the strength of the waves almost knocked us over. I thought about how the trials of life bring us waves that threaten to do the same, and yet we adapt and learn to play in the waves. Take a moment today, EDS Mama, to somehow set aside your waves and simply be in the presence of God. “Be still and know that I am God,” Psalm 46:10 NIV.
EDS Mamas are hurting creatures. We may feel alone, misunderstood, sad, and disconnected. Nobody gets us! Our current friends simply cannot understand us, our husbands wonder who we have become, and some days we don’t even get ourselves! It is human nature to want to be understood. It will not change our circumstances, but in some way, it makes our load lighter, if only for a moment. Something about being understood feels like a breath of fresh air. We want it so badly, but we just cannot find it.
You might try searching for an understanding ear by joining some chronic illness groups on social media. I thought surely those who had walked a similar road would be able to relate to me. Well, I did find other EDS Mamas through these groups who were just like me and we were instantly connected because of a mother’s love for her sick child. But darkening the joy of connecting with these mothers was the storm cloud of running across a lot of seriously hurting individuals who were angry and somewhat belligerent, perhaps rightly so. They had been deeply hurt in their lives and it was evident. Some just could not open their hearts to another hurting person who had a different viewpoint on subjects that should have connected us through our common journey. I was a bit surprised by this because EDS has caused me to respect others’ medical choices, a lesson I thought most in these groups would have learned. I was spending way too much time trying to find just the right words to explain my viewpoint and diffuse the situation. I found myself feeling anxious and questioning what I was doing, wondering if my mission was worth the heartache it was bringing into my life.
Eventually, after much prayer, I decided it was not worth the toll it was taking on me. I pulled myself out of these groups with a determination to focus on my blog, hoping that God would orchestrate His deliberate connections. After all, I did not have to help God out! Those who wanted to read my blog, who felt it was encouraging, would continue to read it. This lifted a big weight off. This time around, I used my personal social media page to connect with friends and family and it became enjoyable again even though its shortcomings remain in the “friend world.” It can still leave one feeling lonely, not quite fulfilling those deep needs to be completely understood. I am grieved somewhat for those who are housebound due to disability as many of them use social media as their sole source of friendships. It cannot possibly take the place of real life relationships.
You might also try to find connections with others who can relate to you through attending support groups. While these places gave me a sense of feeling understood in some regards, it became difficult to hear so many experiences that were even more devastating than my own. I tend to take on the hurt of others and sometimes these meetings weighed heavily on me. On the other hand, I miss these folks when I don’t attend regularly and I do need to visit some of these again to catch up. Also, those who oversee these groups not only aim to raise awareness in the community, but also work hard to provide valuable information to those who attend the support groups.
You could also try to seek out other mothers who have chronically ill children, however, those friendships I have gained are ones God brought to ME and so I continue to pray for Him to send me more! Still, these relationships (even though they may be ordained by God Himself) present some challenges or should I say, present some opportunities for us to learn lessons that God has for us! One must ask God what it is He wants us to do with these connections He has placed in front of us. We should desire that all mamas move forward in their lives. Sometimes another mom will choose a different approach with their child than we are choosing. Do not be disappointed, sweet mama, if you find this relationship that you thought God sent your way is changing direction at some point. God is refining you through what feels like an impending loss! It might not be healthy for this friend to continue to spend so much time with you because they need to focus very differently than you do. We may hold them back in their progress just because of our medical choices. It does not mean we no longer care about one another. On the contrary! We have to allow others to do what is best for their child and their families. This can be a painful process because you may have become attached to this mother. But when we release them into God’s hands, we can be ready for the next one that will come across our path who we are meant to encourage. AND you can always be connected through praying for them!
Social media, chronic illness groups, support groups, human friendships…they can all leave us feeling unfulfilled and lonely still. I am NOT saying these avenues are bad! They just simply cannot ever fully meet all of our needs. There is one friend who sticks closer than a brother, one who will pursue us and want to spend time with us. “No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.” John 15:15 ESV. He won’t EVER turn away from you and it will only feel refreshing to be with Him! Once you find this friend, you won’t need to search for understanding in all of these others replacements that never fully satisfy. Are you ready to accept His friendship? He is waiting for YOU! Psalm 139:2 MSG says, “I'm an open book to you; even from a distance, you know what I'm thinking.” He knows you and He will support you perfectly.
I was exhausted beyond exhausted. The last several days had been very full. I reclined on my daughter’s bed to talk with her and as I conversed with her there, I began to consider shutting my eyes for a bit and snoozing a while in hopes of gaining a second wind to carry me through the last few hours of my evening. I might even be tempted to sleep right through until morning. Just as the sweet allure of this temptation began to set in, my phone rang. Oh no. It was a friend from church. I knew her as an assistant in the children’s program. Of all days, she probably wanted me to substitute for her tomorrow morning. Here it was, Saturday night and I do not like last minute plans. I have to admit that I let the call go to voice mail because I did not even have the energy to speak with her. My mind went back to the last time she called me looking for a substitute. That time, I was unable to help her because I was going to be out of town. As I laid there with my eyes closed, a little voice started to tell me I could go to bed early and that I would have more energy in the morning. I clicked a few buttons to listen to her message. Sure enough, she was looking for help the next morning. When I called her back, I learned I would not have to prepare anything to teach the kindergartners through second graders. I was only filling in as a helper. I simply had to show up and be present. That I could do. I agreed to help her out and she thanked me over and over.
The next morning with tears in my eyes as I listened to the teacher speak about the video the children had just watched, I realized that God had determined for me to be there. The “bottom line” of the message was that “Knowing Jesus Changes Everything.” I became emotional as I realized these children did not yet know the full life impact of this phrase. I felt humbled to be in this moment where this amazing truth was hopefully entering little hearts where it might grow to the point that it could be pulled out during a tough trial as an adult. See, my friend, knowing Jesus changed everything for me. It changes our whole perspective during the storm. It allows us to cope and persevere. It means we can see beyond our circumstances to minister to others in the moment and see a future for ourselves that has no burdens and is only full of goodness. And it changes us forever. Knowing Jesus really does change everything.
The verse we focused on this day said, “Now faith is confidence in what we hope for and assurance about what we do not see,” Hebrews 11:1 NIV. My mind flashed back to many dark days as an EDS Mama where I could not see Jesus even when I was looking for Him. I had to come to the place where I had confidence He was there even when it did not feel like it. I thought I had faith when I was a child, but I realize now that it was in this long, difficult journey as an adult that He was burning faith into my heart. Do you still have hope, Mama? Do you know there is so much we cannot see? “And He said: ‘Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.’” Matthew 18:3 NIV. Go to your Father in Heaven as a little child and He will build your faith.
As an EDS Mama who struggles with anxiety, I like to find natural ways to help me unwind. I already have a lemon balm plant in my garden and love to cut the stalks throughout the summer, hang them upside down in my basement, and once they are dry, pull the leaves off and store them in a big mason jar. Lemon balm is known for its calming effects. To make it into a great afternoon or evening tea, simply grab about a tablespoon of the leaves, stuff them into a tea ball and place in a mug. Pour some boiling water over the tea ball and let it rest for about 5 minutes. If I’m really tired, I leave the tea ball in my mug and just go and sit down with it. After a few minutes, I just sip away and don’t bother removing the tea ball. In other words, it does not matter how long you let the tea leaves steep. It’s not rocket science.
Today I picked up a peppermint plant at my local home improvement store all with the purpose of drying the leaves in the same manner for making my beloved peppermint tea. I find it really soothes my stomach after a meal and when I have a headache, I like to relax with a cup of this tea. I’ve been purchasing organic peppermint tea at the store but I figured, why pay a premium price when I can grow it myself?
Both of these teas I mention could be chilled and made into a refreshing summertime treat. I’m going to try that soon this summer. On a funny note, between my EDS daughter and my allergic son, we keep our air conditioning on from about March to late fall, so a hot cup of tea along with slippers sounds good to me!
Lately I’ve weaned myself off coffee for different reasons. I had a horrible headache for days as my body craved this stimulant to which it had become accustomed. You ask what my go-to morning beverage is now? I pour a single packet of stevia in a mug which is a natural sweet herb. Then I squeeze a quarter of a lemon in a separate bowl. I boil some water and pour it over the stevia to dissolve then I add the squeezed lemon in. Some would argue it’s not great on my teeth because of the acid, but I figure it can’t be much worse than the acid in the coffee. Besides, I don’t drink pop which is acidic. In addition, lemon is very alkalizing to the body even though it is an acidic fruit. I also purchased a rosemary plant at the store today. I’m anxious to try cutting a small sprig of it and adding it to my morning lemon water.
I hope this inspires you to nurture yourself, dear one. Nobody really takes care of moms and I know you do a lot to care for your family. Make sure to care of you because a lot of people depend on you! Plus, it just feels really good to take some time out for yourself.
Mother’s Day was so special to me this year. All of my children pampered me in unique ways which made me rejoice in their individuality. God made them each so differently and I love, love, love seeing that lived out in real life! I felt truly loved and although I have failed in many ways, God has healed in many ways. I wanted to share a beautiful wooden sign with you, EDS Mama, which my youngest son made from simple boards he assembled and painted himself. His sister will vouch that he worked all day on it. When she investigated to see where he was that day, he peaked around a corner in the garage to answer her calls, drill in hand. I was not expecting such a large, creative gift from him nor the verse which he incorporated. I have pondered that verse since he gave it to me. As an EDS Mama, it has great meaning and I had to share it with you.
“I will lie down and sleep in peace. For you alone, O Lord, make me dwell in safety.” Psalm 4:8 Let me repeat that first part. “I will lie down and sleep in peace.” Wow. I did not rest peacefully for years. I had to keep a listening ear for my daughter practically every night. I had trouble shutting off the miserable pictures of each day’s events. To watch one of your children living in chronic pain leaves vivid memories you wish you could forget. When I awoke each morning my first awareness was this heavy burden of living with EDS. Sleep was not peaceful, but the first part of this verse tells me that at some point, I WILL lie down and I WILL sleep in peace.
“For you alone, Lord.” This whole journey points to Him alone. He gets all the credit and all the glory. It would be easier to go on with my life and focus on me, making up for all the years I lost myself because I was busy being a caregiver. But He changed me. The rest of my days will be spent telling of His goodness and faithfulness. He uses dire circumstances to point the eyes of the world to Himself. As EDS Mamas we get to meet with God alone and witness His works.
“Make me dwell in safety.” No matter what life brings, I am safe. Nothing can happen to me or my loved ones that can truly bring harm. Even in death we can be safe through Jesus Christ. “For to me, to live is Christ and to die is gain.” Philippians 1:21. Once I would place my feet on the ground in the morning, it was my routine to make my way to where my daughter was sleeping. I would wait there and watch for the up and down movement of her chest, my assurance that the breath of life was still present. God alone made her dwell in safety. He watched over all my children when I was unable to attend to them all. His goodness never fails.
I sleep much more soundly these days. He has built my faith. God alone. Do you sleep in peace, dear one? You can dwell in safety. I love that word, dwell. It’s where we live each day. Through God Alone.
It is very strange, EDS Mama. When I was in the midst of all the times in and out of hospitals and doctor appointment after doctor appointment, I was tired of it all. I did not want to continue on that path. I really actually hated everything about my life. Eventually, God gave me peace and a boldness (after many years) to share Him with those He sent me to on my daily journey and I grew to enjoy the excitement of seeing God work even in difficult places. Now we are in the place of managing a chronic illness and with a diagnosis now, we are not finding ourselves in the constant hospital setting.
The thing I am struggling with now though is that I actually miss those times. I find myself in a different (somewhat boring) place. I’ve come through the fire and God has taught me so much and I feel like I am still waiting for Him to show me what He wants me to do with it all. But I am realizing it is His plan and His work and I have to wait on Him! I am trying to be faithful with where I feel He leads me, but I do not think I have seen the entire picture of everything He has planned.
If you find yourself in the midst of all the doctor appointments, physical therapy, financial woes, and hospital visits and procedures, I challenge you to soak up those times and look for God at work. Do not leave that time of your life without seeing God work in this very unique place He has you. You have been given a special mission. Before you know it, you, too, may find yourself coming out of the fire and wondering what to do with your life. Strangely enough, you might miss those times like I do. For me, I’m spending some time sitting at the feet of Jesus, waiting for Him to show me what He has planned, what He wants me to do next. I’m praying for peace and contentment in the day to day, but I want to see Jesus work in BIG ways still! He won’t disappoint, that I am sure. But He is still doing a work in my heart, teaching me things I do not know yet. Jeremiah 33:3 says, “Call unto me and I will answer thee and show thee great and mighty things thou knowest not.”
In our ladies’ bible study tonight, we did an exercise where we took all the letters of the alphabet and wrote out corresponding words which describe the character of God. I arrived on the letter H and a tough lesson God had taught me as an EDS Mama popped into my mind. I wrote the word Humbler because God in His perfect and righteous care for me humbled me big time over the years. I used to think I had things pretty much together and I wanted to take some of that credit. God showed me that He cannot use a prideful spirit and that everything is really about Him anyway. I’ve said before in previous posts that dealing with difficult doctors and trying to get the help a chronically ill child needs has a way of making you feel very, very small.
The Lord has used all the caregiving I learned with my daughter to equip me so that I can also do the same for some elderly loved ones in my life. He has given me every tool I need to get this job done. But just like the ones God brought out of Egypt who wandered for years in the desert, who forgot His miracles and grumbled against Him, I did the same thing today. When I should have had patience, should have kept my eyes on the One who equips, I was impatient, not very gentle at all, and quite frankly, perturbed. Let me be clear, this was no fault of my loved ones. I was frustrated by circumstances. Like His chosen people, I had forgotten His goodness, faithfulness, and provision that He had taught me not too long ago. He humbled me tonight at this bible study when I realized I missed the opportunity today to bring Him glory and instead, chose to let pride creep in, focusing more on myself than on others. I had missed the chance to be a healing balm to someone. A big part of this was my fault as I’ve been putting God on the back burner and not spending time with Him like I should.
The good thing is that God is Forgiving (letter F). Tomorrow is a new day to let His provision shine through me to encourage those who need to know God cares about them. It’s my job to keep spending time with my Father so that my focus is where it should be. I want to move past The Humbler and embrace all the letters He offers to me.
As I sit by my window and watch the snow fall quietly, consistently, and softly, forming a protective layer on the earth, it reminds me of God’s protection, how He covers me in so many ways that I do not even think about. It is constant, thick, and not one area is left uncovered. Quiet like the snow, you would not know it was there until, in a moment in time, you look and see it. Today it will be a heavy accumulation, much like the way I like to see God’s protection. I smile as I think of His love in this way as if it is too heavy to even shovel! Even my snow blower would have a hard time cutting through it!
An EDS Mama also protects her child; it is her job. We have done it for so long that we do not know any differently. A Mama’s protection is strong and it is fierce. Sometimes I think I should have more accurately named my blog “Mama Bear”! We try to protect our loved one from the hurt that we ourselves have encountered along the way, hurt from doctors, nurses, psychiatrists, counselors, peers, ignorant strangers, and the list goes on. We have been somewhat successful in sheltering our child so that she can put what little energy she has into some blurry glimpse of daily function.
But there comes a day when our child is no longer a child. We have to allow him or her to begin taking on more responsibility in a lifelong journey. It is hard for a Mama to do this because it will not be easy to watch. There will be hurt, tears, frustration, and mistakes. It was painful for me when I was in the midst of it all, but I know it will be even more difficult to watch my daughter become her own advocate. She will experience first-hand the judgments, dis-belief, and mean spirits of others. On the other hand, she will witness the love of Christ as He works through believers who will cross her path, making the journey all worthwhile. She will watch God work through impossible circumstances and work everything for her good.
It is all part of growing into the woman God wants her to be. If I interfere with this by constantly trying to protect her, she never fully learns about His grace, guidance, mercy, forgiveness, provision, comfort, and fierce protection. Sometimes I try to help God by telling Him how to protect her. “If only you would do this, Lord, her life would be so much easier!” I’m so thankful that I can trust Him fully to cover her with the heavy snowfall of His protection. He does not need me to tell Him how to do this. This Mama Bear just needs to get out of the way! When springtime comes and the snow is gone, His protection will still remain. “God is our refuge and strength, an ever-present help in trouble. Therefore, we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day.” Psalm 46:1-5 NIV.