Where do you draw the line? When do you stop researching?
How do you make the choice between looking for answers for your children or spending time with them?
How does a marriage survive the constant pull of children living with a chronic condition?
Why? When? How? Where? ..............
Every so often I find myself in over my head with the issues the kids face. I become wrapped in a cocoon of MSPI, PI, FPIES, EGID, safe foods, failed foods, safe medications, reactions, was it a reaction?, was it something I did?, was it something some one else did?, how many oz did she drink over the last 24 hrs?, research, doctors, specialists, researching doctors, should we try this?, amino acid based formula, amino acid based food, is that a rash?, why is she pooping so much?, why is he crying so much?, are those dark circles under her eyes?, is that a new rash on his head?, is that blood in the poop?, is that mucus in her poop?, can I see the poop hun?, why is he throwing up more?, was it the knife I used?, did I wash my hands after eating and before touching her binky?....more thinking about being behind in research.....more feeling guilty for not knowing all the research..........my head starts to spin and before I know it I wish I was just sitting with the kids.....but then I sit with the kids and one weird poop, vomit, burp, or crying for no reason and I am back behind the computer looking for answers.....looking to other moms in the same situation and learning more each day.
It is a vicious cycle. Trying to find help for your children and just being able to do regular things with them such as feed them.
I have a problem........I am addicted to finding ways to help my PI children. Can you blame me?
What would you do if your child could not eat FOOD?
However I now try to limit my time on the computer. I limit my time on Facebook with the other moms, I limit my time spend researching so I am not as familiar with the medical terminology of their condition as I would like to be. I limit my time to blog. This way I get to enjoy the children as they grow. I become so consumed by my need to help them that I forget time is going by and I will miss Heath's precious smile as I walk by and Hayl's running to give me a hug while I sit at the computer. I will miss them.............I will miss them doing all the cute things babies and children do. So for now I take all the hugs, cuddles and smiles I can get. I try to bury the strong urge to do more research and I try to balance my time.
My husband stands by my side through everything and every so often he reminds me to put the computer down and just spend time with the kids. He helps as much as he can so I can get research done. I am sure however some days he just doesn't want to hear or talk about anything PI related because sometimes I feel this way. I try very hard to just push it out my head and carry on a "normal" conversation. However I have forgotten what "normal" families talk about. I am guessing they don't talk about poop, vomit, medical research, potential doctors to visit and what is going on with all the other PI babies we know.
I think the important part is I admit I have an addiction and now I just need to continue dealing with it. We need to continue coping and finding new ways to do it.
Life goes on and so do we......as a family we just need to keep evolving as PI consumes us.
I can relate to everything you are saying. It is good that you are able to recognize how consuming it is trying to take care of your child. But try not to be too hard on yourself. I just found out about FPIES and I am trying to learn all I can. My son has been sick for a long time and our doctor just mentioned this to us last week--it's that gut feeling that finally someone has verified after 20 months of KNOWING something wasn't right. It is neat that you were able to physically get together with other mom's, I hope I can find others, right now I am trying to figure out a lot on my own. Blessings to you--and know--you are a great Mom, a wonderful mom who is doing everything humanly possible to help her children be well. God bless.
ReplyDeleteKristina