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Latest update: Tuesday, Tuesday, May 7, 2013 
Journal
Tuesday, May 7, 2013 1:04 AM CDT For those of you who followed Benji’s story, you know that in my writings, I not only kept you updated on his medical condition, I also shared openly about the emotional and spiritual aspect of what we were going through. Many of you felt like you had become a part of our story, a story that seemed to end so abruptly. I have been fairly silent since then and though I can’t tell you what all is behind this, I’m feeling a need to connect with you again and give you a window into my life now, as I learn to walk this new, painful path, without Benji. It’s not pretty. I’m finding there’s no easy way out. I can’t walk around it or avoid it; my only choice is to walk through it. I so don’t want to have to do that, but this is where I find myself. I continue to believe that God has a purpose in all of this, and maybe someday I will know what that is. I also know that God loves me desperately and wants to carry me through this time. I believe he will (and has been); however, some days/moments it just hurts so badly, I don’t know how I can walk this path. They say the pain lessens over time, and I’m sure it will at some point; but for right now, the pain has steadily been increasing as the shock has begun to wear off and I am becoming more and more aware of the heartbreaking, harsh reality of our loss. I truly can laugh and have fun, but at the drop of a hat, the grief comes rushing in again. The deep pain is always there, so raw, just under the surface, and it takes very little to bring it up.
It all seems so unfair and from a human standpoint, so wrong. And if someone asks me to make sense of it all, I can’t. Though I wish I could, I can’t explain all that happened over the last six months and why it ended the way it did. I can’t explain the miracles and answers to prayers (or should I say, prayers that were answered in the way we wanted them to be answered), at the beginning. I can’t explain why or what God was thinking. To be honest, I find myself wondering what people who don’t have a faith in God think about those things; does this solidify their questions and doubts about a loving and all-powerful God? I actually find myself feeling like I need to “defend” God by being able to explain why things happened as they did. (I know that’s absurd- God doesn’t need defending, but that’s how I feel at times.) I have a lot more questions than I used to have. I talk to God about these things and I ask him questions. However, I do so, knowing that some of them may never be answered in my lifetime.
So how do I go on? As I told someone recently who is going through their own difficult journey: no matter how painful, no matter what our emotions are telling us; we HAVE to continue to tell ourselves the truth of what is. Emotions, feelings and circumstances do not change truth; instead, if we continue to speak the truth into our lives and live in the knowledge of that truth, our emotions, feelings and possibly circumstances will begin to conform to the truth. These truths are quite simple and they are the same truths I reassured Benji of many times. They are these:
• God is good! Always good!
• God loves us more than we can ever imagine!
• God only does and allows what is best for us, even when his purposes are incomprehensible to us!
Therefore, as I walk this path, I continue to speak these truths into my life, whether I feel them at that moment or not. This path is so hard. The questions so great. The feelings of loss so intense. I look forward to the day when my feelings and emotions will begin to conform to these truths. In the meantime, my faith is what continues to guide me.
To give you a better picture of what goes through my mind, I’m sharing a letter I wrote to Benji. These are some of the things, that if I could, I would love to tell him, and I have decided to share them with you.
Oh Benji, do you have any clue how badly my heart hurts at the thought of never seeing you again on this earth? And how horribly I miss you? I had no idea it could be like this! Sure, I knew it would be painful and difficult, but NEVER to this degree! I think about you all the time- everything I see and hear reminds me of you or something to do with you. I love seeing pictures of you, yet lately, whenever I do, the pain is nearly unbearable! I think it’s because the longer it goes, the less I remember how sick you really were at the end; and I see these pictures of you and I’m reminded of all of your “good” years. Last week I turned on my camera to take a picture, and there you were, on my memory card, sitting in your hospital bed at Riley. You had this look of glee on your face as you were playing Xbox with Bryce Shetler. I could almost hear your unique utterances of excitement. It tore me up to see you like that- looking so happy and relatively healthy! I so wish you wouldn’t have had to go yet!
Last week, I undertook the job of sorting through all of your medical stuff. I couldn’t stand the idea of throwing it all away if there was someone who could use it, so I found a church that took it. They take unused medical supplies into needy countries and use them there. I’m so glad they will be put to good use and who knows, maybe a child will be saved because of something we donated to them. However, that was sooo much more painful than I would ever have thought it might be. In fact, I think I cried longer and more deeply- (from the depths of my being) than I have any time since your death. Whenever we get rid of any of your things, it is painful because it reinforces the fact that you really are- NEVER coming back! I don’t know if I’ll ever get used to that thought. I didn’t realize how much I desire to continue giving you medical care. I have no desire to be a nurse, but though it got old at times, I loved taking care of your medical needs and at times playing doctor! I think taking care of your medical needs has become part of who I am and not needing to do so in the future, leaves a hole and takes away some of who I am. It leaves in me a desire that will be impossible to fill!
As I was sorting through things, I struggled more when I came across certain things- like your port needle, the LMX4, the covaderm and the aqua-guard. All of these things were something you specifically needed or we had a hard time getting a hold of, even though you needed them. Your gripper needle- we LOVED that needle! It was different from the typical butterfly needle that most people use and the kind Riley carries. The gripper was awesome because it didn’t stick up from your chest and didn’t need the “bio-patch”; it laid flat on your chest. It was also a smaller gauge needle, (which you liked). Because Riley didn’t carry that type of needle, we always took our own along. I wept that day, at the idea that we no longer need those needles and I will never again access your port. (Of course, it’s not that I like the idea of sticking you again; I’m just sad because of the reason I can no longer do so!) It was really weird, but I actually felt a connection to those needles- almost like I was going to miss them. I guess it does make sense though, because as much as you didn't like needles, those needles were vital to your care and they had become part of you, and who you were.
The covaderm too was something we needed to make sure you had with you. Your skin had become so sensitive over the years and would break down so easily that you couldn’t tolerate most bandages. Peggy (our Home Health nurse for a few years) introduced those to us years ago; they worked well and never broke down your skin. Again, covaderms were something Riley didn’t carry so we always made sure to take those along whenever you were admitted. These were also part of who you were- in fact, you had them on pretty much 24/7 for the last year and a half.
The aqua-guard: we needed those to cover your needle and bandage when you showered or bathed. For some reason we had a difficult time getting those as well, so the last time we were at Riley, the nurse made sure to bring us a bunch before we left, to take home with us. I donated most of those because you never needed to use them; that broke my heart!
The LMX4: that “4” was vital. LMX4 is basically an extra strength lidocaine (a numbing cream). You always liked to put this on before we accessed you port and you thought the “4” did a better job of numbing than the regular lidocaine. However, this was always hard to get a hold of too and for some reason, insurance wouldn’t cover the “4”; so, whenever we were at Riley, we would save up all the little tubes that had leftovers in them and brought them home with us. Because of how much time you had spent in the hospital this past year, we had quite a collection.
Your enzymes: For 15 years, giving you those was something we “lived”. From the time you were an infant, we gave you enzymes to help digest your food. Without them, you would have starved to death. As soon as you were able to start eating anything besides formula, we began to put them in your food. We would open the capsules and pour the tiny little balls that were inside, into applesauce and feed them to you. We almost always carried applesauce in the diaper bag and each time you ate anything, we’d give you a little with your enzymes before you ate. When you were a bit older, there was a period of time when you hated applesauce because you ate so much of it. Sometimes, we’d forget or didn’t have applesauce with us, but we discovered you really like ketchup; so, if we didn’t have applesauce, we’d put your enzymes in ketchup and you loved it. (I always kept extra fast food packs of ketchup in my van)☺ Dad and I both kept enzymes in our vehicles and I always had some in my purse. Sometimes now, when we’re ready to eat, the thought flashes through my mind, “Did Benji take his enzymes?” I miss needing to make sure you took those enzymes!
I also packed up your masks, nebulizer tubes and other nebulizer and oxygen supplies. Those masks were also a part of you and I couldn’t give them all away; I had to keep at least one of each. Somehow, it helped me feel as if we were keeping a part of you. All of the things I mentioned above; I kept at least one of each as well as a few other things. I don’t know if I’ll ever be able to let some of that stuff go. I’d never have guessed how connected they make me feel to you. Going through those things was so rough! So many memories and emotions washing over me the entire time! I wish we wouldn’t be in the place where I needed to do that!
It has been so difficult and heart wrenching over the years, watching you try so hard to do what everyone else did so easily; and frequently, not being able to. I was so looking forward to seeing you enjoy those new lungs and being able to breathe easily. To see you keep up with the other kids and do the things they were doing. To not have to miss out on things because you were sick or needing to do treatments. I grieve the loss of all of these things. I know that you are able to do these things now, I just wish I could see them for myself and enjoy it with you!
I am so grateful that I have no doubt where you are! Not the exact location, but wherever heaven is, I know you are in the presence of God. If you get the chance, would you please ask God to help me retrieve the photos and videos off of my waterlogged phone? Especially the ones of the memorial that the school had for you and the St. Louis staff pictures. I can hardly stand the thought of losing those too!
Benji, I think you know, but just in case you don’t: I will always love you! I will never forget you! A piece of my heart died with you and I don’t expect that pain ever to go completely away! I am looking forward to seeing you again someday, but in the meantime, run. Enjoy those perfect lungs you now have. Bask in the presence of Jesus. And before you know it, I’ll be there; running to gather you up in my arms again, kissing your face and hugging you close to my heart! Then, and only then will that hole in my heart be filled and I am longing for that day!
Read Journal History
Hospital Information: Riley Children's Hospital
705 Riley Hospital Dr
Indianapolis, IN 46202
Links: http://youtu.be/6jlDtKYTiHs Part 1 of Benji's memorial service
http://youtu.be/P3LrIsmut3U Part 2 of Beni's memorial service
rememberingbenji.blogspot.com
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