Disclaimer: I am not writing this post to say we have no help or people are not supportive, it is quite the opposite, I would not even know we were lacking in these areas unless there had already been people to step in and help take care of us during this time. Sometimes, people comment on things they have no clue what they are talking about. Recently I have seen a few news stories about families deciding to terminate certain care for their ill child which will eventually end their childs life. And the comments I have seen on these stories (and even comments in some of the special needs groups I am part of on FB) is appalling. So, I would like to open up a little about this and my personal feelings on the subject. I know generally speaking, I do not let my emotions take control of this page and try to only present the facts about Silas and his condition. However, this is something that unless they find the magic cocktail will be facing with Silas. Do you have any idea how much it breaks my heart to even have to admit that? In my humble opinion, there is nothing worse on this earth than watching the flesh and blood you created out of love sit and suffer and not be able to stop that suffering. To have absolutely no control over your childs pain and not even be able to explain to him in terms he can understand what and why this is happening. Because, we still do not have all the answers and may not ever have them. When we first got the news about Silas indeed having some sort of progressive unknown disease, we thought we could handle anything no matter how much care, we would do everything in our power to prolong his life. After-all, isnt that what we pro-lifers are taught to do? Then reality slowly began to sink in. When he began to lose abilities last Christmas and even more so when he began declining rapidly in August of this year. Doctors began having these kind of conversations with us a year ago. Telling us we needed to start thinking about what we wanted for him and putting it on paper. So, being the bullheaded Francis that I am, I figured it all out- made my game plan. I knew what I wanted for my child. Now that things are happening, I am not sure anymore. It didnt happen like I had planned in my head, things change every day. No one, and this is the only time when I will claim to speak for the vast majority of the special needs community, I mean NO ONE wants to feel like they have to decide on what interventions are worth it and what interventions are too far and only prolonging their childs suffering. We do NOT in any way shape or form enjoy in the slightest making these kinds of decisions. Whether a family decides to do minimal intervention or they decide to have every machine known to man keeping their child alive, that is a personal decision between their family and God. It is not for us to judge. The way I see it, unless I personally ask for your opinion about what I should do with my child, I do not want to hear about how wrong what we decide is. And even if I ask, if we decide in the end what you suggest is not what is best for our child, please continue to be supportive and try to wrap your head around the things that are filling ours. Doing some of these interventions in a way make us feel like we have some control over the end outcome. But the truth is, whether we decide to or not, God is in control of when he takes not only Silas home but all of us. Just let that sink in. Sometimes it is so comforting that I am not in control. Then there are other times I cannot stand not having control (I am sure this comes as no surprise to the majority of you who have known me for longer than 5 minutes). The moral of all of this rambling is - be supportive. Do not be one of the ones making comments about how a true Christian would do this or that. Pray for these families, that they make the right decisions and have peace with the decisions they come to. Trust that there are medical professionals weighing in on this who know the family and the situation and are more qualified than you to help guide the family and answer their questions. Reach out to the family. Let them know you will support them and offer emotional and physical support. We have found a church that we love. and the Sunday school class is right there sometimes before I even have to ask. They are always ready to fill a need. I have no words for how much this has helped us. The food, the calls, the texts, they have gone above and beyond. Part of a group or just you as a person, REACH OUT! It is lonely in this world of a high needs kiddo. All the little links I get suggesting different things for Silas let me know we are not forgotten. It is so helpful to know Silas, Violet and Sawyer are still thought about. Invites to bithday parties even if you and I both know we cannot make it for one reason or another bring tears to my eyes, knowing people still want to include us is huge. Follow through, if you offer to do something, do it. If you cannot make the commitment, do not mention it. I have friends who are far away and their uplifting texts are just as important to me as those who are here and physically able to help. Offer specific things you can do. If you just say what do you need in the middle of another unexpected admission or emergency, I might not have all my thoughts together and might not be thinking about dinner tonight or tomorrow or next week for my other kids. Or how the clothes in the washer cant just sit there without going sour until we get out of the hospital. Or remember that I need to put gas in the van before I can make the trek to and from the hospital again. One last tidbit. Anyone who knows my family, knows we handle our own pretty well. However, remember even the toughest families need support. Never ever ever assume everything is taken care of unless you hear it straight from the horses mouth. And if you have made it to the end of this post, good for you! That was a much longer and much more emotionally charged post than I am accustom to making.
Posted on: Sun, 02 Nov 2014 13:21:43 +0000
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