I have been in denial. It still shocks me to consider Lee a tubie. I believe this will be a relatively short term thing for him. He will move on. There are many other children and adults who require tube feeds only. They will be tube fed the rest of their lives. I am thankful that we don't anticipate this for Lee, but it doesn't change the fact that he requires a feeding tube now.
His medial supplies (pumps, IVs, G-tube) and the hospital are really my best frenemy.
I hate that they are a part of our life. I hate that the hospital is a comfortable place to be. I hate that we can hear a room number and know where it is, be excited about it. I hate the extra work that all these things require and the way that they hold Lee back. They are an enemy.
On the other hand, I cannot even type that without incredible guilt. The deeper truth is that I am forever grateful for those tools. Those supplies and pumps and tubes mean life. I don't even want to consider where we would be if these things were not available to us.
This week is Feeding Tube Awareness Week.
When we learned that Lee would be going home with IVs and a feeding tube, I googled like crazy. It took me a long time to find anything. Eventually I found a couple blogs written by other moms and they led me to the Feeding Tube Awareness facebook page. It has been a great resource, even a hope. I can see many other families who love a tubie. They have been doing this much longer, they have questions and answers and experience. I didn't know anyone else who had been through this; the community showed me life goes on. It showed me that feeding tubes are life saving. Of course, common sense says so - but it is harder to see it in the day to day picture.
So here is to breaking out of the denial. My son is a tubie, and it means life.
http://www.feedingtubeawareness.com/
This is great, I love you guys so so much!
ReplyDeleteI can relate to this when I look back on handling the news that our 7 year old had diabetes and would have to face the prospect of needles to test his blood 3-5x a day, and have at least 2 shots of insulin a day, plus all the blood tests the docs would do. It was a relief to know that it was ONLY diabetes, not life-threatening, like leukemia, or something that would take him away. Yet it was LIFE-LONG, and I couldn't explain to him why HE was "chosen" to have this. That little vial of precious fluid that he relies on keeps him alive, and if he'd been born 100 yrs earlier he wouldn't have lived past 9. Ask your sister-in-law how happy she is that he grew into adulthood. :-) I can identify with the guilt, as I wondered why God didn't give it to ME, who deserved it, instead of an innocent little guy who loved him with all his heart. I hated diabetes, but I still am grateful for the men and women who God blessed with the intelligence and perseverance to develop insulin so it can be managed. I pray that someday there will be a cure, just like I pray for Lee every day of his life, and have since we knew you were expecting him. I love that you are honest, and even public about your feelings, and pray that it helps someone not as far down the road as you are. Most of all, I love YOU and the joy you've brought into our lives.
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