Em and I just want to Share.....

Hey everyone, Just wanted to share with all of you, (that have been such a Blessing to Em and myself), that we so very much appreciate and respect your kindness and support. We all sure seem to share alot,.. we hurt,...we cry,... we pray,... we hope,... and we praise. Our lives are confusing,... complicated,...and unpredictable at best. I as a parent, I can honestly say, in a very little time span... I have been more overwhelmed emotionally and cognitively than ever in my life!!!! So much to absorb and so much to sort out but.... I have decided in my heart not to let fear overcome our life....we have to be smart and realize even though our children have renal disease they are still individuals with different needs and wants.....we each as parents have been entrusted by God and he believes in us to seek his guidance in knowing whats best....I feel like if we do this we can trust our instinct as to whats best. The most irritating thing to me, with kids and kidney disease, is it seems medical progress is on idle...we still tx the same as we did many yrs ago....most are not dx. until they are incredibly sick....after I got Em's medical record I found that she had been spilling 2+ or more protein for a year and NO ONE had mentioned it until I became suspicious and pushed and pushed and pushed until I got Em to a nephrologist.....we are blessed in that we have not been in full blown NS...but I don't want to go there if we can help it either....Why do they have to get so sick before they get transplants.....this I don't understand....Why is the first line of medicines so harsh... when meds like galactose should be discovered and available ASAP.....with most of this said,... I want to focus on being proactive and preventive.....we all know germs are a issue for most of our kids and we can control this for the most part with good hand washing....avoiding sick people is the challenge....sometimes other people are not educated on the complications our kids can have with infections....we have to teach them.....I guess what I am trying to say is we can't isolate our children but we have to protect them....for example,.. if I don't home school Em I want to do home bound when flu season hits our area....not a 100% prevention but it will help her odds of getting it especially being she could not get vaccinated....but I know what Em enjoys, so if we have to, we can make it fun and rewarding and not isolated and boring or lonely....she can text or email her friends... and that's cool you know....just the friends she has made here keeps her excited...I guess I just want to do my best to keep her attitude positive and teach her she can have some control over her life...instead of feeling alone and sad from FSGS and its effects....Its not easy and its a struggle minute by minute to fight off the fear of what might happen in the future....when I read your post at times I cry for you and pray...and wonder... will that happen to Em....will she endure what some of your precious children have....will she be able to follow her dreams...go to college...have relationships....have children.....I would be a fool to say I didn't worry...God knows I do....I just want for all of us not to be so afraid and consumed with fear....but turn that fear into passion to be and do the best we can for all our children.....most of us have other children...and please don't forget HUSBANDS who need us and we need them too......keeping everything balanced is a real challenge....but in balance comes happiness....I am just seeking peace and happiness for us and praying for the same for all our very special friends!!!!!! God Bless all of You!!!!!! Respectfully, Melissa and Em