Maybe I Should Not Do This

tonight, maybe I've been running on fumes for too long, but it just seems to be coming out and so here it is.

John made 250 days with no hospital, no ER, no IV's, 250 beautiful days in which he played and had a great time, learned to use his chair, stretched his wings and felt the independence that little 5 year old boys should get to feel. During that time he recovered from fighting off a series of intestinal viruses, took on a huge UTI, and overcame yet another virus. He is the most amazing kid I know, his love for life is contagious and his smile illuminates whatever space he is in. I am so privileged to be his mommy and I got so spoiled in those 250 days, when it came time to take him to the ER again I didn't believe that he would need to be admitted and even as I sat in the hospital I watched him play and enjoy life and was able to deny that he would have more horrible things to go through in this life.

Since just before Mother's Day he has had so many IV's that I've lost count, he still only barely cries when he needs one and says thank you to the person putting it in when they are done. He has been admitted to University Columbia several times, and is there again, he has been both inpatient and outpatient in Omaha and spent the weekend in Children's Mercy in Kansas City. He's gone through an upper GI series, a ton of blood work, had a central line places and then had to undergo yet another barium enema. Through all of this he has found reasons to smile, reasons to giggle, and brought joy to countless people who don't even know his name, but can't repress the smile that comes when you see a little boy gleefully speeding down the hallways and whipping over to play with a water fountain.

There seems to be a perception out there that Mark and I are very strong and that we have this great faith because we go through all this with John and continue to believe in Christ. This is so far from true, we are so weak, we hurt so bad, we would gladly trade places with John, I can't tell you how many times I have held him for an IV seeing the bulging veins in my own hands and wishing that they could be poking me instead. We are broken, sin filled people, we fear that our little boy will die and that we will not get to hold him and hear him giggle any more. We cry out to God for mercy for this little boy, for all the little children that go through these horrible things and yet we hold on so tight to him, knowing that if the day comes that we must let him go we will be devastated and unable to draw a breath that doesn't scream with pain.

One more time John is hospitalized, this time he has a gram negative bacteria growing in his blood, they've caught it, the antibiotics are working, he even made it 7 hours today before needing tylenol, but still the flashbacks to other times come. I know that John is sleeping peacefully, his little body fighting off this bacteria with the help of these drugs, that his blood pressure is stable and his heart is beating regularly and his breathing is unaffected and his little brain is churning and learning and growing all the while. Still I can't forget the PICU, I can't forget the monitors, the tubes and wires and pumps, and breathing machines and swelling and pain and being unable to be brought around because the least bit of release from the drugs that kept him unconscious let him fight and the fight was taxing his system too much and killing him. I know this isn't that time, I know there aren't doctors standing around discussing when they are going to ask us to sign DNR orders, and I know that he is fighting through this and yet the bad days haunt my mind and drive the tears from my eyes.

When Christ says 'o ye of little faith' He is talking to me, those Words are mine, they are aimed right at my heart. I know that John is Christ's child, I know that even the hairs on his head are numbered and that Christ gave His very life, His very blood for this child, but still I cry out in doubt and pain, still I shake and I tremble with fear, still I cannot trust.

John will likely come home tomorrow or the next day, hopefully at least by Sunday, as his mommy needs Holy Communion right now more than she needs air, water or food. His smiles will fill my heart with joy, seeing the joy he gives others will be treasured in my heart, and yet I cannot let go of the knowledge that surgery is coming. I know, I understand, that it is for the best, I get it that it will give him the chance to soar, to grow, to maybe even have more than 250 days of freedom next time, but somehow that is just a little less real than the memory of surgery last time. The scared look when the surgeons carried him away, the fear in his eyes when he woke up in pain, the tubes, the cuts, the recovery time that is so long, and yet even from here I know that the recovery time will have time when he is smiling, time when he is excited to see friends, and this time should be shorter than last, oh God I hope.

If you've read this far all I can say is I'll put my camera in my bag to take to the hospital tomorrow and post some pictures soon. You will see he looks great, a little skinnier than last time, but happy, beautiful and amazing and all this despite a mommy who is weak, sinful, and a woman of very little faith and very many tears.