1/4/16

So, there's a sick child in your area...



Maybe it's social media, hopefully it's awareness, but lately it seems that we are all hearing more about when families are in crisis over health issues. The dirty little secret of Aunt Margret's cancer is out in the open. And rightfully so. Having a family member who is chronically or terminally ill is hard. When it's a child, it's devastating. Anytime that someone is facing death is tragic. And many times, these families are suffering in silence. Our health system doesn't make things easy. With the economy today, it's difficult to be able to survive financially on one income, and there are so many obstacles families face. 

If it's a wage earner who is sick, they may be able to work in some cases. If it's a child, at least one parent is missing more work than normal. Despite having nurses for twenty four hour care in hospitals, it really is frowned upon to leave your child there unattended.  If there is more than one child in the family, it adds extra stress. A younger sibling may not always be allowed to visit. My husband and I found a solution that worked for us, but it was in no way easy. When Jamey was admitted, I stayed with him and Jim stayed with Ed. Ed has been to work with Jim at times, and he's stayed home with Gramma at times. We are incredibly blessed that Jim's boss was accommodating, because that's not always possible.  And it would have been financial disaster if Jim would have had to call off. I took FMLA until it ran out, then had to give up my job. And there is no day care for teenagers who look healthy but are in incredible amounts of pain. You can not take your immune suppressed child to day care and expect them not to come into contact with every bug out there. We are most definitely not alone with the issues. 


As a community, we've always wanted to help. As humans, we want to know what is going on. And some families are more open than others. I can talk for hours online about Jamey's health issues, but one word questions sent me into tears face to face. The person asking meant well. They meant no harm what so ever. It was my issue I just could not handle the diagnosis. 

I have cried for what could have been, I have cried for what he's missed out on I have cried looking at graduation and Prom pictures (fully knowing that there was no way my Anti social son would ever go to Prom.) The array of emotions I have gone through have made me question my sanity. I couldn't expect anyone else to understand, least of all my friends and peers who were celebrating their children's successes. And now that my youngest is right there with his peers, it's just as difficult. 

I'm not jealous. I don't expect the world to stop because Jamey is sick. I m actually extremely happy and proud for my friends when their kids are moving on with their lives and growing into the adults they were meant to be. But I am also extremely sad that Jamey is not there with them. It's hard to see his dreams put on hold or him being forced to drop them all together. I skipped senior night football games for two years because I knew that I couldn't make it through without crying. And it wasn't because I wasn't happy for the kids. It was because Jamey couldn't celebrate with them. 

Freeport closed out the field we have used for 95 years this year and Ed played a Junior Varsity game on the field. I had to leave the game because I didn't want Ed to see how hard I was crying. I was thrilled for him, but so upset that Jamey missed it. And the reason Jamey missed it. 


While liver disease, CRPS, and the migraines have stolen his childhood, they've also stolen our families peace of mind. And I'm not ashamed of mourning both. Ed has developed anxiety issues and has been on medication for it for over a year now. He's watched his brother go through surgery and multiple scary procedures. He's come home from school only to be loaded into the car to head to the emergency room. During one medication reaction, he was literally thrown across the room. He's seen his brother not be able to keep anything down, he's had to suffer through late nights at hospitals where he is expected to behave. He's seen our worry. He knows there's things he can't do because we just can't afford them. And it's not ending anytime soon. 



There are many ways that you can help out a family such as ours, and it doesn't need to cost a penny. Sometimes a little concern and compassion goes a long way. 

  1. Call and ask how they are doing. Offer a shoulder, listen. Understand that sometimes, they don't want to talk about hospitals and doctors, but just need to hear about whats going on in life outside of the medical field. They get leery of lookie loos who just want the scoop. Be sincere. I can tell when someone is being insincere or just being nice because it's expected.
  2. Don't quit asking them to do things. Stopping in for coffee, or going to a movie. They'll let you know when they can't, and in our case, that's quite often. Not being included hurts more than having to politely give your regrets. And sadly, expect plans to be canceled or postponed. We've left wedding receptions and picnics when they got to be too much for him. We've canceled plans at the last moment because he suddenly gotten sick. I don't RSVP anything anymore because we just never know whats going to happen. But please, don't stop inviting me. The loneliness is the worst part of this. 
  3. If you're in the position to, offer to help with siblings/children. We had two families willing to take Ed to football practice this year, and that meant the world. Trying to balance out a normal life for him is difficult while dealing with Jamey's appointments, the fact that he basically stays in his room... 
  4. A lot of hospitals offer ecard services where you can send an inpatient a card. 
If you're in a position where you can spare a little to help out financially: 
  1. Gas cards for trips back and forth. 
  2. Gift cards for restaurants or grocery stores near the hospital. 
  3. A gift basket with snacks, hygiene items or even laundry soap during hospitalizations.
  4. Visit during a hospitalization if possible. 

Do you have anything to add to the lists? Do you have a story to share? 

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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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