How much to his system, to his feeding ability, to his speech, to his weight, his growth, his development. And not even just to him, how much to his brothers, to our family? As a quote on our United Family Fund pamphlets "When you diagnosis me, you diagnosis my family".
And, as another mom put it so well...."it may be his illness but the whole family suffers through with him" We suffer through with him....we don't suffer alongside of him- he has to live through not being able to do the simple act of eating, to live through simple foods causing him pain, to not be able to tell me his pain, to have the scary thing IV's, blood draws, procedures, and vomiting and shock....but we suffer through it with him...when he is begging for food during family meal time, when he hurts and can't communicate other than crying (and crying and crying), when my arms are busy holding him and can't help one of the other boys, when he can't sleep and we stay up with him, when he feels lousy so we accommodate his needs first....we all suffer through with him.
I grew up with 6 brothers and sisters, we are all pretty healthy....certainly no chronic illnesses. I know what it is like to grow up in a big family and share in the sacrifices...and love; but I do not know what it feels like to grow up with a brother that takes so much of my mothers time and energy and resources. I worry everyday how the other boys are coping with it. One of the things I have learned is, if I am coping, they can cope better. Kids are like that- they live and learn through example through most of their formidable years. But days of reacting and my anxiety builds and grows and even my best coping mechanisms are difficult to grasp at. I have developed many coping strategies over the past year but some days, FPIES still gets the best of me.
Living with a child with a chronic illness is often a constant daily struggle, the struggle to define the line between FPIES and normal. The line where I pace myself so I can make allowances for his needs while still meeting the needs of 3 other children. The line where I don't get upset at FPIES for what would normally be happening and affecting our lives anyway, the everyday struggles of raising 4 children on a limited budget and time. The line where I allow myself the adaptations, the shortcuts, the changes to our family structure and life because of what FPIES is....because it is what I need to do to get my family, my Little Man, through it. Where we appreciate and thank God for showing us how to slow down, to accept change and it's outcomes.
Because God has given us a gift in Little Man and embracing his illness and the changes it has brought us is my main coping strategy.