Hard days still come....
Today I went to the hospital with Micah so he could have a check up and have his port flushed. Micah gets his port flushed every 6 weeks and he gets a check up every 3 months, usually a few weeks after his scan. Traditionally this is the day we find out results as well. But we have been around long enough to know not to wait until the day of the check up.
I talked to the Doc about getting Micah's port out. I am nervous to do that because last time he got it out, we had to put it back in 8 weeks later. That was very difficult emotionally for him. It is a small surgery, but he still has to go under for it. I learned today that as he grows, there is risk that a blood clot could form. There is always a risk for infection as well. So it may be best that it comes out soon.
Usually going to the hospital is no problem. We get to sit in Art Therapy and chat. I get to see Barb, Micah's case manager. After all this time, I still miss these people. They are part of our lives.
Today, I loved feeling the hand of a Doc, who I haven't seen in 6 months patting my shoulder and smiling big as she walks by. She was thinking, "Micah looks amazing and he is so healthy!" We ran into our palliative care nurse and she marveled at our boy as well. It truly makes me beam.
As much as I try to focus on how thankful I am for the fact that Micah is more than just alive, he is healthy and growing, I can't look away from the hurt of others. Part of me wishes I could put my head in the sand and just live in my world without being a witness to the sickness and pain. I hurt for the children, the moms, the dads, the brother and sisters and the grandparents. It also brings me back to such sad days.
There was a little girl two beds down all tucked in with just her bald little head sticking out of the covers. Most likely she had been there since 9am this morning. She looked so tired. We met another little boy in Art Therapy, that kept mentioning his "chemotherapy". He was about 7 and very talkative. It is odd for kids to talk like that. As I was listening to him, his 13 year old sister explained to me that this is his second week of treatment and it was all new. The boy told me he had 63 more treatments to go. His mom came to get him and had the "this is all new" glazed look on her face. I wanted to take her aside, hug her and ask if she needed anything explained in mom language. I wanted to make sure she had a good support system in place. I want to reach out to these people, but I don't know how to.
On the way out, I saw a cleaner man sitting on the chair with our receptionist rubbing his shoulder. It looked odd to me, so I glanced back. I heard Evelyn say that "she just died". I wanted to yell at them, "Please tell me who died!" There have been kids that have passed away and we didn't even know. Docs and nurses can't tell us because of the privacy issues. If they know, parents don't talk about it either. It is too hard.
It just makes me so sad.
Today was a good reminder for me to pray not only for the families I know and follow on Caringbridge, but also for those families we don't know.
I talked to the Doc about getting Micah's port out. I am nervous to do that because last time he got it out, we had to put it back in 8 weeks later. That was very difficult emotionally for him. It is a small surgery, but he still has to go under for it. I learned today that as he grows, there is risk that a blood clot could form. There is always a risk for infection as well. So it may be best that it comes out soon.
Usually going to the hospital is no problem. We get to sit in Art Therapy and chat. I get to see Barb, Micah's case manager. After all this time, I still miss these people. They are part of our lives.
Today, I loved feeling the hand of a Doc, who I haven't seen in 6 months patting my shoulder and smiling big as she walks by. She was thinking, "Micah looks amazing and he is so healthy!" We ran into our palliative care nurse and she marveled at our boy as well. It truly makes me beam.
As much as I try to focus on how thankful I am for the fact that Micah is more than just alive, he is healthy and growing, I can't look away from the hurt of others. Part of me wishes I could put my head in the sand and just live in my world without being a witness to the sickness and pain. I hurt for the children, the moms, the dads, the brother and sisters and the grandparents. It also brings me back to such sad days.
There was a little girl two beds down all tucked in with just her bald little head sticking out of the covers. Most likely she had been there since 9am this morning. She looked so tired. We met another little boy in Art Therapy, that kept mentioning his "chemotherapy". He was about 7 and very talkative. It is odd for kids to talk like that. As I was listening to him, his 13 year old sister explained to me that this is his second week of treatment and it was all new. The boy told me he had 63 more treatments to go. His mom came to get him and had the "this is all new" glazed look on her face. I wanted to take her aside, hug her and ask if she needed anything explained in mom language. I wanted to make sure she had a good support system in place. I want to reach out to these people, but I don't know how to.
On the way out, I saw a cleaner man sitting on the chair with our receptionist rubbing his shoulder. It looked odd to me, so I glanced back. I heard Evelyn say that "she just died". I wanted to yell at them, "Please tell me who died!" There have been kids that have passed away and we didn't even know. Docs and nurses can't tell us because of the privacy issues. If they know, parents don't talk about it either. It is too hard.
It just makes me so sad.
Today was a good reminder for me to pray not only for the families I know and follow on Caringbridge, but also for those families we don't know.
Even for those of us walking beside you there are hard times. Last week we went out for dinner and at the next table was a child about 10 years old. He was obviously in the midst of chemo treatments. I just gagged up and became so emotional. It was so strangely hard to witness. We were both so filled with gratitude for Micah but also fear crept in. God never allows to travel through a journey and come out the same as we were at the beginning of it. I am so thankful for his refining work....we really are such a work in progress.
ReplyDeletebtw - John hopes to call you guys later this evening.
Sue K.
That would be so tough to see, especially because you KNOW the pain these parents are going through. I think it's hard to see, but so important to have our "heart strings" tugged, because otherwise it becomes too easy to get so busy with life, and too easy to forget to pray for those who are in deep valleys. Thanks for the reminder to pray for those parents and their kids.
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