Today was the coolest experience. I drove into the pharmacy parking lot to pick up a prescription for my daughter. I was finishing a conversation on my Bluetooth, so I sat in my car for a bit after parking. Right across from me was a man who pulled up into a handicapped spot. He drove a sporty black car. As I talked, I watched this guy from the driver’s seat start to grab pieces of equipment from his car, pulling them into the front seat. Was it a walker? I couldn’t tell. Then I saw a wheel and then another. I saw a dog looking like part pit bull sitting in the passenger seat and I wondered if it was a service dog. Eventually, this man finished putting together all his pieces and I see him move himself from the front seat into a wheelchair right outside the driver’s door. He grabs shoes and puts them on his feet.
He starts to wheel himself toward the pharmacy and his dog watches him, asking, “Hey! Where ya going?” I say goodbye to my sister and walk inside the store only thinking that this is my last stop before I can get home. It’s been a long day and this is my second stop to pick up medication for people. I make my way to the back of the store and I notice this man down at the end of the counter at the drop off area. He is dropping off a prescription for himself I gather from the conversation. I approach the other end of the counter and give my daughter’s name. I thought it was one prescription I was picking up but it looks more like five or six.
As I’m finishing up, this young man wheels over behind me and I realize I know him. I ask the pharmacist if this is someone who used to work here and he says yes and reminds me of his name. And then I remember… this was the mildest tempered young man who waited on me so many times over the years. I finish my transaction and turn and wait while he finishes a conversation with another customer.
His wheelchair puts me in comfortable territory. He remembers my last name from old times. I tell him how cool it was to watch him put his wheelchair all together in the front seat of his car and what an improvement that is over my memories of lugging a very heavy wheelchair out of the back of my car for my daughter. We talk a bit more about his car and how he’s adapted it since he suffered a motorcycle accident which left him a paraplegic. I make note of the smile on his face. He’s adjusting to his new life. More than anything, I was glad to tell him that I missed him and that it was so good to see him.
It’s days like this that make me very grateful for all we’ve endured. We cannot compare stories. This young man has suffered tremendous loss. So have we, but our stories are very different. I cannot understand everything he experiences day to day. But our experiences cross over even if only a little and it feels like I am not intruding; I may enter into this discussion with him because God has allowed. Interestingly, I met a couple earlier today where the husband was recently diagnosed with Parkinson’s. I gave them a copy of my book, God’s book really, which I pray God uses to give them a little comfort.
Thank you, God, that you use everything for our good. Romans 8:28 NIV: “And we know that God works all things together for the good of those who love him, who have been called according to His purpose. How are you seeing God work all things together for good for you?
Today was a good day for me and God. I drove to a pharmacy which is a fair distance from my house. I handed in the prescription for my daughter as we do every month. Today was different. The pharmacist returned to the counter and told me it was going to cost $285 for me to leave with this filled prescription.
What could have happened next is that I could have panicked, could have raised my blood pressure, could have started to get a migraine, could have raised my voice at the pharmacist, and done the same with the insurance company, could have believed for a bit that God was not there for me, could have worried about the future, could have worried about how I was going to pay for it now and for the next eleven months, but with God’s help, I did pretty well with the whole situation. Today was a good day for me and God.
He has taught me that He is over everything, even when it feels like things are not going my way. I calmly walked over to the doctor’s office who is in the same building and sat down while they looked into the matter. They said it had nothing to do with the prior authorization. I next called my daughter who called the insurance company. (I was thankful she was at home to do these phone calls.) I sat in the waiting room and prayed while she handled this part. After a while she called back and explained the problem, saying it would take at least 24 hours to resolve. She absolutely needed the medication today so it was not an option to wait another day. We both agreed that I would have to pay for the medication and hope the insurance company could resolve the problem for all future prescriptions.
When I went back over to the pharmacy and asked them to fill it, I was delighted when the pharmacist eagerly told me it just went through perfectly fine. “Praise the Lord!” I said to her. “I’ve been praying about it.” Next, she scanned the bag of medicine and I could tell by the look on her face there was another problem. She went back to her computer and was whispering with the technician. I sat down and prayed some more. In the meantime, an elderly lady came in and sat next to me. She started talking and I wondered if maybe I was supposed to meet her this day. I felt calm knowing God was working on our behalf and so I listened to this woman talk (mostly small talk), but she was quite chatty nevertheless.
The pharmacist called me back to the counter and very apologetically explained that there would be a $285 charge today. Somehow, last month’s prescription went back into the system and it appeared that everything was resolved when it was not. I think she expected me to get angry, but I remained calm and said, “That’s alright. God is still over it all somehow.”
My conversation with the elderly lady in the waiting room seemed trivial, but maybe she just needed to talk with someone today. Maybe my words of God to the pharmacist needed to be heard. Maybe today was simply for me. It showed me that I’ve learned to trust my God. I don’t need to worry about the future, for medications, for the what-ifs in life. He is Lord over everything. Today was a good day for me and God. “This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:24 ESV
I came away recently from a special gathering at a loved one’s home feeling extremely blessed for this EDS journey. I caught a glimpse of watching the past push me forward into God’s good purpose where I felt very, very fulfilled. My husband and I were checking out a friend’s new home when a handsome couple approached us. I noticed right away the beauty in this woman, striking in a vivid spaghetti strap dress. Her face was gorgeous and yet my eye, familiar with another world of sickness, noticed a port hiding by the neckline of her dress and a pain patch resting on her left shoulder. My heart instantly ached to know her story; I wondered if her days were filled with pain like us.
As she and I made our way indoors, I fairly quickly felt comfortable to say how I noticed her pain patch which opened the opportunity to share our story very briefly. I’m not sure why I did this except that in some way by sharing our story of pain, I was hoping to soothe hers for this moment. She was not offended at all and we conversed back and forth, asking questions about medications and feeling quite at ease in our own little world where others could not comprehend, but where we were all too familiar.
Wanting to respect this lady’s boundaries, I was careful not to keep her too long and we slowly made our way outside. A shooting thought created anxiety in me that perhaps I had invaded her privacy. As I found a seat under the tent in the yard, that feeling dissipated as this lovely lady came to sit beside me. Her husband was just as friendly and along with my husband, the four of us enjoyed some good conversation not even tainted with the subject of illness. See, we all understood how illness creates a yearning for everyday “normal” conversation where pain and the medical world is forgotten for a brief time.
As the evening wrapped up and this couple was getting ready to leave, I embraced this sweet soul who was a stranger to me yesterday. I whispered to her that I would be praying for her and she said the same. My heart overflowed as I wondered if God had allowed all this pain in my life as an EDS Mama so that I would be able to connect with those that God would place along my life’s path. In a strange yet providential way, I’m drawn to the hurting ones, comfortable with the sick, those with pain patches, ports, and all the mess and beauty that comes along. I’m thankful and waiting to see how God continues to use all that He has prepared.
I have been blessed with four amazingly talented children. They are all smart, determined, motivated, and kind. They all played sports including hockey, gymnastics, soccer, baseball, and figure skating. I am afraid our society puts too much value on the things our kids do and I think our kids do it to themselves as well. You and I know our worth extends beyond the things we do. The essence of who we are is found deep inside of us. It is found in the fact that God created us simply because He loves us and wants us! It means our kids matter… "just because.”
Yet in this world a healthy, active child still gains his or her identity by the things they excel in. Maybe it's sports or the achievement of good grades. They soak in the attention when we attend one of their performances, take pictures, and praise them for their hard work and discipline. But the chronically ill child, when unable to continue in the activities which once were loved, may suffer an identity crisis similar to the death of a loved one. See, we are constantly forming our identities in relation to friends and loved ones. When one of them dies, we are forced to discover or re-invent ourselves again without the presence of this person in our lives. The process can be shocking and take time to figure out. Similarly, when a sick child can no longer continue in a beloved sport or when an illness robs him or her of the ability to concentrate, learn, and excel in school, a new identity must be created.
When my daughter could no longer figure skate because of physical setbacks causing a regression in skills, she had trouble answering the question, “So, what do you do?” The answer used to be, “Well, I’m a figure skater.” The mocking beast of chronic illness laughs and taunts, “Who are you now?!” In the case of the death of a loved one, even healthy individuals need months, perhaps years, to create this new identity. For the sick ones, symptoms (especially fatigue) make that process even more challenging and lengthen this timeline of self-discovery.
It is our job, EDS Mama, to relay the message to all our children that they matter and are valuable! This worth is not tied up in the things that they do or in titles, but in the essence of who they are and always will be. Let your voice audibly speak this truth to your children so in the end, they believe it for themselves. Luke 12:6-7 NIV reads, “Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.”
I've written and re-written this post several times. See, I am trying to get the focus off of myself and look outward. Lately that's been challenging. I've been coping with physical pain and I hate the attention it keeps demanding.
Let's get one thing straight...PAIN IS NOT A GOOD TEACHER! I would much rather learn life lessons other ways than through pain. It not only prevents me from doing the things I desire to do, but it also changes my whole temperament. I'm having trouble just being kind to the people I live with and caring about their needs. My patience is not what it used to be.
In my frustration and anger, I've been asking God why He allowed me to miss that one stair three weeks ago. Although I've experienced this same injury multiple times in the past, I was not prepared for the severity of widespread pain that decided to come along for the ride this time. What lesson is it I'm supposed to be learning? I was made to care for others, not have others care for me! I've been thinking a lot about Mark 8:33 NIV. "But when Jesus turned and looked at his disciples, he rebuked Peter. 'Get behind me Satan!' he said. 'You do not have in mind the concerns of God, but merely human concerns.'" I'm asking how to be heavenly focused at this time because I know I should be, but I don't feel that I am. What do the "concerns of God" look like and what should I be doing? Maybe it is more about what I should be becoming. It is a day to day choice to not fixate on my pain, but to look outward at the opportunities God is still placing before me.
One blessing from this mishap is that slowing down my pace has helped me to see people. I've always been a fast walker and it has been refreshing to actually see the faces of people in my daily activities. Have I been speeding past opportunities all along? It would be a positive step if I were to just slow my pace a bit even when this ankle improves.
What about you? Do you feel stuck in a broken state? Do you want to be more outward focused? Hang in there. I know you don't want to focus on your pain. I know it's really, really hard, but with God's help, we can still find opportunities to walk beside others, even with painful, angry ankles!
I just came back from a family road trip to Mississippi where we were visiting my husband’s brother and his family. They have four beautiful children, two dogs, and a cat, and we enjoyed our visit with fishing, target shooting, playing games around the kitchen table, and exploring Memphis, TN. One of our daughters and our son who is in high school joined us for this long-awaited excursion; it had probably been ten years since we were there last. After much thought and family discussion, we agreed to leave our daughter who has Ehlers Danlos Syndrome at home. Those who have not walked in our shoes might think this is terrible, but try to understand what the reality of EDS looks like for us and many others.
Years ago, we would have considered a trip of this nature and after weighing all the walking, drive time in the car, and effort it would take for her to socialize, we would likely have just stayed put within our four walls. She is older now, twenty-two actually. She has the capacity to understand all the activities that we intended to participate in and the fact that she would not have the freedom there to rest as much as she needed. It was her conclusion that our family would be much more limited in our activity if she went along with us. We considered taking her wheelchair so we could go places, but the wheelchair does not negate her fatigue and pain; it was almost too much for her to imagine trying to cope when she knew how she would really be feeling on the inside. A person with EDS is constantly weighing the physical and emotional cost of activity that most people simply take for granted. Furthermore, a choice to not participate in an activity is NOT a choice to give up! It's simply real life with EDS.
See, Abby has learned it’s not always worth it to do everything that everyone else does. She actually truly enjoyed the peace and quiet at home while we were away. I realized that I, too, have learned to live within a new reality and accept what that looks like. While it was hard to leave her home alone, I knew she could handle it and that it was the right choice for her. I was able to take control of my thoughts and not constantly fixate on envisioning her at home all by herself; I found myself simply enjoying the moment. I also do NOT sleep well away from my own bed, so each day that went by, I felt myself becoming more and more tired and realized with Abby’s chronic fatigue, there would be no way she could have kept up with this pace. We drove the entire twelve hours home today, stopping every few hours to stretch our legs. As the pain in my back, legs, and neck increased each hour (I have hypermobility also), I was thankful that she had made a mindful choice to minimize her pain by staying home. I would bounce back the following day, but her pain would increase not only during the car ride, but also over many days even after the trip.
EDS Mama, you may feel very limited as to the activities your family enjoys together. You cannot worry what others think about your family's decisions. Sometimes you will decide to just stay home and be together. Other times, you will venture out, with or without your chronically ill child. I know how hard it is to leave that child behind. Perhaps before you know it, your child will be making those decisions on her own. You might even realize you have gained a settled peace about it all.
I was driving alone in my car recently, savoring the freedom to turn the Christmas tunes up as loudly as I wanted. It hit me for a moment that living with a person who has Postural Orthostatic Tachycardia Syndrome has had an impact on the musical enjoyment in our home. See my daughter was always musically inclined and used to be heard regularly singing or playing the piano in our home. Her siblings would reach their limit and often ask her to stop singing. When she became sick however, oh how I yearned to hear her sing again year after year after year. What used to be a mild annoyance at times now was a gift I treasured and missed.
Not only did she quit singing and playing the piano, but she also had zero tolerance for noises. POTS has a way of making a person highly sensitive to sounds; she gets overstimulated very easily. Where once we had lived in a very music filled home (my children play several different instruments), now our home was extremely quiet. I stopped playing my piano, a form of relaxation I had previously enjoyed.
It seemed to me that my daughter has not been so irritable about noises recently, so I questioned her if she had noticed some improvement in this area. She looked at me with an expression that said, “you just don’t get it, Mom” and replied that she had not seen any improvement but she was trying to be more tolerant than she had been over the years.
As part of MY growth of moving forward, I’m trying to incorporate some music into my days. Music has a way of ministering to my heart. I love playing songs through my phone in the seclusion of my bathroom while I get ready in the morning. Every chance I get to be alone in my car, I play whatever I feel like and as loudly as I want it! How about you, EDS Mama? Are you existing in a dark, quiet world? Try putting on some headphones and spend some time in a colorful, melodic world.
Well, humanly…the answer is no one. We all know that everyone counts on Mom to care for everyone around her, but there is no one to take care of Mama. Okay, in all fairness, I can count on one hand the times I have been sick to the point I have had to go to my bed. In those instances, I get pampered for about twenty-four hours and that is it! Sympathy over! The questions start coming like, “When are you gonna start feeling better, honey?” “What do you want to do for dinner, Mom?” I know that after that one day of being snuggled in my bed, I better get up and back to the normal routine whether I feel like it or not. I firmly believe that only mothers have been given the gene to care for those around her. My husband…not so much.
Today I am very proud of myself. Today I am caring for me. I’m taking myself to my annual appointment that all of us women are supposed to be going to. For so many years, I skipped these. I knew they were important to go to, but when an EDS Mama is taking her child to multiple appointments a week, it is easy to cross these seemingly extra ones off the calendar. See, a mother puts her children first. We go on the back burner and trust that God will take care of us. And He does. I know He took care of me for many years in spite of me not taking care of myself.
I know these are important annual appointments and I also know that when I take care of myself, in essence, I am also caring for my family. You want to take care of your family, EDS Mama, but are you caring for you? Your loved ones likely want you around for a LONG time!
Now that the hustle and bustle of Thanksgiving is over, I thought I would take some time to reflect on the things for which I am truly thankful. The warm summer days I love so much are gone for now and I find myself feeling a bit unsettled. My favorite hobby, gardening, is becoming a memory for 2016 and I know to feel balanced, I need to find some interests that are just for me. We as mothers spend so much effort caring for our families and others in our lives, but when we care for ourselves, we have energy left over to put into those around us.
So, until I figure out a hobby to get me through the winter, I’ve put away all the Thanksgiving decorations. Well, I should say some of them I’m actually eating. Let me explain…I don’t like to waste money on useless things, so my table decorations were actual small squash, pomegranates, and lemons. The extra tables and seating for our turkey meal guests have all been dismantled and put into storage. After our Thanksgiving meal, my “boys” (husband and two sons) left to go hunting eight hours away and so for a few days, I have kept busy putting out Christmas decorations.
As I hung the stockings on the fireplace, my heart overflowed with the awareness that all of my children are still here. Not one of them has been taken. God continues to protect each one. I’m also thankful for the many trials of life because it is through them that I learn to trust in my Father more and more each day. As a mother, I think the most difficult trials are ones in which we see our children suffer. Our hearts break for them because that motherly instinct of soothing their hurts falls short so often; we find over the years that God alone must heal them. I’m thankful for my husband who continues to love me through all my ups and downs. I’m thankful for the circle of life, of seeing new little babies in our extended family at Thanksgiving and gratefulness for the old souls who have remained in our presence. I’m thankful that my heart aches at the still painful loss of my dear friend this year; it’s my heart’s reminder that I have the capacity to love so deeply. I’m thankful for a home where we are sheltered from the cold wind, but I hold loosely to these temporary things and would happily give them up if it would glorify my God.
As I look forward to Christmas, I’m thankful for God’s unconditional love that He loved me in my wretchedness to send His Only Son for me and for YOU! I’m thankful that God pursues me fiercely and always makes me feel like I have value and I matter to Him. I’m thankful that I can find rest in knowing He has a plan for me even when I cannot see that myself. How many things on my list are on your Thankfulness list? Are you finding it hard to be thankful because of your circumstances? Have eyes, Mama, to look beyond the heartache and see that you are very blessed indeed.
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.