Thursday, June 18, 2009

How strong do I have to be.

So, I don't know what's up with me today. I'm feeling pretty blue. I shouldn't be, my kids are fairly healthy, my husband is great, work is good...what more could I ask for.

However, I keep thinking about my little Meryck. His kidney isn't doing so well. You'd never know by looking at him that he is and has been sick. It's a strange feeling when you look at your child and miss him. I don't know how else to explain it. I feel like I want to spend every waking moment with him. I don't mean it in a way to neglect my other children, but I feel like Meryck needs me. The teenager doesn't really need me (well, not as much) - I am here for him. Kyle needs me too, but differently. Kyle being autistic isn't the most lovey type of child. I will admit that he loves on me - and only me - he misses me when I'm gone - he doesn't like when I go to work, but overall, he is pretty independent when I'm home. Meryck, on the other hand is not. He is always by my side. It doesn't matter what I'm doing - cleaning, on the computer, watching TV, whatever - he wants, no it's like he needs to be by my side.

I look into his little eyes and see such an old soul. I wish everyday that I could fix him and his medical issues. I look at him and know all the things he has gone through and also know that there will be so much more that he will have to go through. My heart breaks and aches for him. I fully realize that my children are on loan to me - I don't "own" them...but Meryck...he's so...loving. My eyes well up with tears just thinking about him. Unless you have a child with Prune Belly Syndrome and Chronic Kidney Disease or a chronic, life-threatening illness, you won't know what I'm talking about.

My heart is filled with fear because of the knowledge I have that I may not see my baby grow up. I could very well lose him. Don't get me wrong, I enjoy every day I have with him. I give him as normal a life as I can. I play with him. I love on him. I cherish him. I cherish all my children. It just so happens that Meryck is the baby, my last baby, my cuddle-bug, my cling-on...

I don't use the word "hate" much because it is such a strong word, but I hate that he has only one kidney and it is going bad. I hate that he has to get blood drawn every 2 months. I hate that he has had several surgeries. I hate that he has to have tons of testing done on him. I hate that I might lose him!

I don't like being blue. Usually, I will hold it inside until it goes away or just ignore it and keep living, but I just can't shake it today. My baby, my sweet love...

If anyone reads this, please pray for Meryck. Please pray that he live a long and happy life.

I've lived through some pretty horrific things, but how strong do I have to be...



  1. I sort of know what you mean. My youngest (6yo) has several "issues" that are controlled right now, but for how long? You tend to realize the miracle of life even more when you have a child who is sick. To look at her, you wouldn't know, either, except that she always seems to have dark circles under her eyes. I'm just taking it a day at a time. We're doing okay now...down to only bloodwork and neuro visits every six months. She's my miracle baby. I've had 6 miscarriages and she should never have "been", according to medical science. I treasure the gift of her for as long as she's here!!

  2. I'm so sorry you and your son have to deal with this disease. Your post reminded me to treasure my days with my kids becuase you never know how long they will be here.

  3. Oh, sweetie, it must be so hard on you and that precious baby.
    I know it is not for us to question GOD's will, but it is hard when it is a child that is suffering.
    I saw your twitter post and it led me to your blog story. Some days are just bad. The world builds up around you and it is so overwhelming. If I could, I would hug you tight and talk you through it all. At least for today.
    Lean on those who love you both. Strange as it is, this crazy world of blogging and tweetering and all can sometimes be your "life support". We come to cherish each other and try to look after one another, especially in times of need. So, use us, for fears, tears, laughter, screaming....whatever your need.
    Here is my e-mail. If you need a shoulder, a friendly voice, whatever...use it. If you need to talk in person, I'll do that, too.

    Talk soon, my friend!

  4. I'm so sorry you and your family have to suffer through this and see your kids hurting. I've always thought that God picks out special Moms to take care of kids with special needs and medical issues. I know a couple of Moms with kids that have severe disabilities and they are about the strongest people I know. I bet you are, just don't feel it right now. It's okay to feel your sadness sometimes, you deserve it. Don't ever feel bad about having days like this!

  5. Praying for you all right now, Stefanie. I so appreciate your honesty and vulnerability. I've never experienced the day to day grief you describe - I'm praying that you will find renewed strength. You're an awesome mommy!

  6. Oh Mama! I just want to hug you right now! I am so sorry that your beautiful Meryck is having to go through such tough times. What a strong little love you have, so strong! And what an amazing Mama you are! May God give Meryck a long and happy life with his family! Huge hugs to you and Meryck! I am here for you anytime.


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