I went to Ikea with my brother and sister-in-law and had fun this afternoon. I laughed today. I feel like days like today are far and in between. I am having a pretty hard time right now. I am finding it hard to smile. When it happens, it feels great, but I am sad this week. I did laugh today though.
I had one of my moments the other night while trying to fall asleep. I had my moment when all I could think about was the transplant and all of the risks for both Max and I. I had my moment when I thought about what if Max doesn't make it through this or the bladder augmentation. I hate when I have moments like this, but the reality of it is is that this is our reality. I would do absolutely anything for it not to be, but it is. I try to imagine my life with out him. I guess I do it to try to prepare myself for the possibility of loosing him. I try to prepare myself... but I can't. I can't imagine my life without him. I can't live without my son. He is my everything and loosing him would be loosing everything.
I find myself praying that I would wake up from this nightmare. I pray that Max's labs will come back showing that miraculously he is a healthy 19 month old. I pray that this will all just go away and we will be a "normal" family. I pray that Max will see me as his mommy instead of his nurse. I pray that my marriage will sustain this extremely hard journey. I pray that his bladder will miraculously heal itself so that he doesn't need a reconstruction.
My heart hurts. I shouldn't let this get to me, but it hurts that everyone around me is either expecting or has had a baby recently. Don't get me wrong... I am so grateful that these children are healthy. I wouldn't wish what we are going through on anyone. It just hurts because we would be expecting our second child if Max didn't need a new kidney. I guess you could say it's a pity party for myself. But why us? Why our son?
My heart hurts. I think about all of the things that we would be doing if Max was born healthy. The Christmas toys that he's getting this year would be totally different if he was healthy. We would be expecting baby #2. We would have our big family vacation scheduled for next summer. We would have the house baby proofed... the mattress in his crib lower than the infant level... we would be potty training... I would be working a part time job to help build up our savings for the new house. Instead we're sitting here looking at the 2010 calendar wondering which day will change our lives forever... which day will be the best or worst day of our lives. Which day in the summer of 2010 will be the day that we celebrate or dread every year for the years to come.
My heart hurts... but I laughed today.
6 comments:
Happy to see that you received a short respite from all of the cares and realities of Max's conditions and the hurdles ahead.
Fear of the future must be indeed torturous. There is nothing that any of us can say or do other than to pray for a successful outcome, and continue to offer encouragment.
We all have faith that the day will come when Max clears this hurdle, becomes a relatively healthy young man and someday grows up, with this being a chapter of his life that he won't even remember.
Your doctors and surgeons have gotten him this far, continue to have faith that with all of the wonders of modern technology available, that he faces the best possible chances ever.
You can only control what you can control, and have done a fantastic job of doing so - Max is a very lucky baby! You can't change what you can't control and all of the worry in the world won't change matters.
Stay strong, stay positive, and believe sincerely in a positive outcome. Our prayers are with you, Max, and your family.
DS/BBHS
God grant me the serenity to accept the things I cannot change.
The courage to change the things I can and the wisdom to know the difference.
That has gotten me through many tough times. Just know God is always with you helping you through the good and the bad, He will not leave us.
You are always in my prayers.
{{{hugs}}}
Beth, you will have days like this. and it will all work out. stay positive. you and your family have prayers all around the world going to you and your family. it is good to let it all out like this. it makes you feel better. i would be worried if you did not have days like this.
keep laughing.
All I can really offer you is hugs. I have had many of the same thoughts before because the future really is so uncertain. I guess it is for everyone but for our little guys, even more so. I'm not sure if you know her but what Meghan (son with renal transplant I believe 2 years ago) told me is that when the worries get too big for her and the thoughts grow that she thinks to herself, "In this moment, he is okay." And that it helps. Honestly it has helped me recently to not let the thoughts grow too big. And as for trying to prepare for losing a little one, I don't think you ever can so if you're able, try not to think about that option. I also saw the pics of Max walking with the walker. That is so awesome! Go big boy!
Beth you are an unbelievable mom and you will have more children some day. You are such an inspiration for all and Max is truly blessed to have you and Tim for his Mom and Dad. You all are going through so much and please know you are in our constant thoughts and prayers. If you ever want a girls night out let me know and I will plan it and make it happen. Tony and the boys can entertain Tim and Max. Sending a lot of hugs and love, Wells Family of 7
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