Tuesday, April 20, 2010

A bucket load of tears

So the medically dependent children's program came out today for our annual reevaluation of Jude. She went over all of Jude's visits, therapy evaluations, and new diagnosises within the past year. She had a long list compared to last year, and Mike said they were very nice. He explained the nursing situation to them, and they seemed sad for us. She pointed out that they are basing the denial for skilled nursing on his "needs", and even though he "needs" constant care, it may not be a "need" for nursing care. So then I received a call from the state that there is another program for just personal care, and everyone denied for nursing goes through them. Although, right after she called she told me that she wasn't sure Jude would qualify for many personal care hours because of his age. That's about the time I told her I was physically, and emotionally beat down, and I couldn't take anymore. I know the lady felt terrible because she became really honest. She said she thinks the states program is like swiss cheese, and has a lot of holes in it. She said that in her opinion there is no doubt Jude needs a nurse due to his seizures, medication, and more. She was sweet.

Today I was sent a link from my friend Fleck, and although it's so sad, I felt compelled to watch it. It's the story of a family in our area that were told, just like us, at their gender sonogram that there baby had issues. Unfortunately, the issues this baby had were terminal problems. I gasped when the mom said that she would hesitate when people asked her about a baby shower, the nursery, etc. I understood that portion of her tape, but the rest I couldn't bear to imagine. Throughout their ordeal this family showed the up most strength, and I admire them for being able to share their journey. No one plans on having a pregnancy with issues, but who we become after those issues are given to us determines the person we will be in the future. If we crumble and give up, then our future will in turn crumble. I too like this mother am thankful to have this experience with Jude because he has taught me so much. I am so lucky he is still with me, and I hope we will have a long life together. My heart goes out to this family, and I congratulate them on their new healthy little girl. I know she can never replace your son, but I also know they have a new appreciation on life itself. So without delay here is the link, and if you decide to watch it, grab a box of tissues. http://www.dallasnews.com/s/dws/photography/2009/thomas2/

Some people say they don't want to see sad video's, but in my opinion we should lend ourselves to opening our hearts to understanding their pain. Only through their pain can we appreciate our lives, and the lives of others. We should be grateful to them for opening their emotions to us, and gracing us with knowing their son.

I apologize for my poorly written blog earlier, I was at work, please accept my apologies.


Purple Quilter Queen said...

wow...that's about all i can say. thanks for sharing that. Jenn

Candace said...

Hey Jenn, wow.... no words...

Off subject, you were on my mind today (read tonight's blog). I wanted to tell you about the lady I met who's 18 yr old daughter has infantile spasms. She was on the febatol (sorry for the spelling) for a while. It was so cool to meet a woman with an older child with some of these big conditions that we are all experiencing. She was such an inspiration. And I will tell you that she has three younger children all the way down to eight months! So cool! But you were in my mind today! Hugs!