|Posted by Lauren Sparks on February 18, 2014 at 2:40 PM||I had a volunteer meeting at the hospital last night. None of our baby sitters are available right now in the afternoon/ early evening hours, so I had to wait for Chuck to get home from work and then slog through the traffic to downtown Ft. Worth. I was 45 minutes late. If I had just needed help with Allie, it would have been easy to come by. I have 5 or 6 friends who have kids that play with Allie who would be happy to pick her up from school or let her come over to their house to play for a bit. But, I haven’t felt comfortable asking anyone outside of family (none of which live in town) to help with Shelby. Yesterday’s incident and a couple of others have me contemplating “why” I feel uneasy seeking assistance for her.|
A few days ago, I saw a post on Facebook from another mother of a child with Dravet Syndrome. She was ranting. We have a private support group where a lot of this verbal vomiting occurs because we feel safe there and we all understand each other. I spend a lot of time praying for the people in this group. This particular mom was struggling with feeling sympathy for a friend whose husband was sick. He had been in the hospital but was on the mend and was going to be fine. People were bending over backward to bring her meals, take care of her kids and do other things for her during this time. I think it is wonderful that so many friends stepped up to help this family during a stressful time. But this poor, tired mom with a chronically ill child is friends with a lot of the same people. And she struggles to get any assistance when she has to take her seizing child to the hospital.
One more instance, and I will tie it all together. Back in December, I had an injection for my back. I was supposed to take it easy for 24 hours, but Chuck really needed to go back to work. My parents, who have always been a huge help to us, could not be here. My mom BEGGED me to ask one of my friends to come and help me with Shelby. I wouldn’t do it. She argued with me. “You say you have all these good friends now. [and I do] Why won’t you ask them to help you.” “Because I’m not going to ask them to come toilet my 13 year old daughter and change her diaper!” I said. “Why NOT!” my mom insisted. Why not indeed. I’m just now really starting to analyze this.
Let’s go back first to the other Dravet mom, who felt that no one ever offered to help her. Her friend with the sick husband experienced an acute event. It came on suddenly, unexpectedly, and it was intense. But Dravet Syndrome is chronic. Although there was a definite beginning, there is not an ending. It is something every Dravet child will live with as long as they live. When someone experiences an acute personal catastrophe, his or her whole world can be turned upside down and the family will often need and appreciate a great deal of help to turn it right side up again. When Shelby’s first seizures came – frightening, devastating, almost beyond my ability to handle – we were covered up with meals and visitors and offers of help. The hope of church and family members was that they were helping us through a temporary crisis. But that was not to be. Her seizures continued to come and were compounded by more and more problems. And we settled into our new normal. And part of settling in is learning to accept. With acceptance, the complaining lessens, the grief dissipates somewhat and manifests itself less often and in less obvious ways and the daily joys of life creep back in. And although others never forget your struggle; the pain, the fear, the fatigue – the details – aren’t nearly as sharp.
If you are reading this and you are a personal friend or relative of mine, please don’t read this as a reproach. I feel the love and prayers that constantly surround our family. I know the concern so many have for Shelby and for the lack of sleep we all experience. There are times when your prayers may have been the only things holding us up. And I am being blessed by the best girlfriends I have had in many years. And after spending several long, lonely years praying for a friend, I am so grateful for each of you and don’t take you for granted for a minute. But I have to examine some of of my own heart attitudes if I refuse to ask you for help in times of need. Do I honestly feel like my Shelby is such a burden? Why don’t I believe that she could bring you as much joy as she brings me? Or am I so insecure in our friendship that I don’t think you would do something sacrificial or inconvenient for me? Whatever my issues are with sharing my daughter with the world, I know my friendships can’t grow if I never speak my whole truth. So I guess this blog is my cowardly way of doing that. Here goes:
1. I am almost always tired. Chuck and I rarely sleep straight through the night due to Shelby’s seizures and general wakefulness that comes with Dravet Syndrome. 2. I am always grieving on some level. Whether it’s making decisions about sterilization procedures because she will never marry and I want to protect her should someone take advantage of her; or fighting her school to still teach her some academics and not just how to fold towels; or comforting her while she has 14 seizures in one night – it’s all hard. All the dreams we had for Shelby didn’t die the day we got her diagnosis. They die one by one. And sometimes over and over again. 3. I have a chronic back injury which makes changing Shelby’s clothes and bathing her and lifting her wheel chair into the back of the car and sometimes just trying to get her to walk where I need her to go very painful. 4. Many children die of this condition every year. Although I don’t dwell on this, it is always sitting in the back of my mind. 5. All the unknowns in Shelby’s future weighs heavily on us emotionally.
Those are my truths that I can put on paper for you at this point. But what you also should know is that on most days, you won’t notice those things. Although they are ever present, they aren’t overriding. God has blessed me with an amazing help mate who loves me in spite of myself. Shelby is beautiful, sweet-natured, loving and joy filled. My daughter Allie is smart and spirited and athletic. God is my hope and my glory. His joy gives me great strength. I enjoy time with friends and famiy and I love to laugh. I am happy and I have a good life. I have the assurance of salvation and eternity in heaven with Jesus one day because He died for my sins and yours. So you won’t often hear me complaining. It’s just not who I am. And I don’t often ask for help, but God tells us to bear one another’s burdens. So I’m going to try to get better at “the ask” when I really need it. So here goes. I’m throwing off my spirit of timidity. On occasion, I have a very real need for someone to meet Shelby’s bus here at my house at 3:30 and hang out with her here for an hour or so. If you are a little anxious about all that Shelby’s condition entails, speak up. You won’t hurt my feelings as long as you are willing to learn. I know that most of you have kid pick ups and activities after school, but before you immediately rule yourself out, think about whether or not your thing could be easily handled with a simple phone call to a friend (when right now mine can’t) on the rare occasion that I would actually ask. I know that sounds pretty pushy, but if I’m going to step outside of my comfort zone here, I might as well go big. This is me – being real, being raw, going for “the ask”.