Thursday, October 17, 2013

Is this all in vain?

This morning is a hard morning for me. Three mito kids have passed away recently and I have followed their stories, one in particular. I have never met this family face to face, but I have read how he was such a lively child, full of life and fun and then his parents watched for two years as their son died in front of them, in their house, in their arms. I grieve for them and with them in a very surreal and perhaps unhealthy way.

I freely admit that since Will was diagnosed I am depressed and have major anxiety about the future and have used medicine to help me deal with all this. Well, being pregnant that medicine isn't exactly ideal for the baby so I'm off. I weaned off for the last trimester. That medicine helped me stay focused and less anxious, but it also gave me the ability to have a poker face about our life. It gave me a filter for my emotions so I wouldn't be a hot, irritable mess.

I'm not jumping off a bridge or in some deep depression because I'm not on it, but I am FEELING so much more. I can't pull away from the grief I feel for this family who lost their son, from the grief I feel for our family. Are we doing all this in vain? Will our son suffer the same way theirs did? What the hell will I do without Will? I so desperately hope and pray for a miracle, and I can't decide if that's delusional, but it's all I have some days. I just have to believe that something is going to happen to help Will. And I REALLY BELIEVE something will happen to help him.

I watch Will make amazing progress every week in school, OT, PT and Speech. He is a really smart, good kid. Why him? He deserves so much more than we can ever give him.

I grieve because I feel as though Will's story is parallel to so many others who have passed away, and have lived in pain. I do not want that for Will. I already grieve for his unborn sister, who should be totally healthy, but I grieve for her at the pain she may experience in her life. I feel bad trying so hard to have another baby, only to know that she's going to experience things no child should have to. How selfish of me to do this.

It's a "feeling" kind of day around here and that's ok. It feels good to cry, to have a stronger emotion than what I have been having but it's also really scary, overwhelming and just kinda of sad.

I just cry and get it all out, then breath deeply and remind myself to focus on the here and now, be in the moment with Will and enjoy everything each day offers - even the bad and sad stuff. Each day is a good day because I get to hug my little bud, play games and even get angry with him when he tests the boundaries of being a four year old.

One good thing about feeling more is when something is funny, it is really damn funny. This was my biggest laugh of the week, I literally bookmarked this link so I could get a good laugh in whenever needed.

Painting a pumpkin - we do not need sharp knife work in this house!

Yes, the finished product is pretty much a black pumpkin with a few streaks of other color.
Dracula Mickey Mouse on a fake pumpkin. Gotta love Target finds that won't rot and are fun!

The soapy, bearded boy in the bathtub

Gymnastics - getting into handstand position

Feeling pretty pleased with himself as he held his handstand for the whole ABC song

Doing "Puppy dog" walk down the mat. He tried so so hard this morning to make sure his knees didn't touch the mat.

The "attitude" look - MOMMY, STOP taking pictures. NO!
Will recently started being able to balance on his knees. This is a pretty awesome accomplishment if you ask me. So today in gymnastics he was not only balancing on his knees, he was "walking" on his knees down the mat. He works so hard at things so many take for granted.
I mentioned this new accomplishment to his coach, Mr. Glass, and he immediately had the entire class do the new gymnastics trick - The Will Walk as he called it. He had each kid do it down the mat, including Will. You could tell Will was so incredibly pleased and proud to have something named after a physical accomplishment he did. I was living in the moment without my camera, so I didn't get a photo, but I will forever have that memory.


  1. Oh Lori, biggest hugs to you. I cannot imagine for a second how you must be feeling. Throwing in some good old pregnancy hormones can't help the already mix of intense and unimaginable things you are grappling with. You are an amazing mother, and it would be selfish NOT to have this baby ;) Will needs to be the awesome big brother he was meant to be, and baby girl will have an awesome beautiful amazing life with parents who shower her with love and affection. Will is a precious precious boy who has touched us all. I have different beliefs than most, but I don't think there is a WHY. I hate this reality for you. I wish for even one day I could shoulder some of your burden. The whole thing is a colossal rip off. Somehow, you guys have managed to see all the good despite it all. You inspire me to be a better mother. That is not a "reason" for this. Nothing (and I mean NOTHING) will ever suffice in that area as far as I'm concerned. I don't feel at all comfortable that people suffer so that others can be more compassionate etc. That's just not where I'm at. To me, we do the best we can with the cards we're dealt and connections between friends and family along the way are the only things worth any value anyhow. My biggest wish for you and your family is that your tribe continues to lift you up in times of difficulty, and you always share ways in which we can help. The last picture of Will is just SO stinkin cute. He is so very "normal" in so many ways. Living in the moment is so stupid hard sometimes, but everything that hasn't happened yet, hasn't happened yet. Sometimes, I think we should be more like dogs and "live in the moment." Being free from worry would be nice. Sigh. This post is a random mess, but I will leave my word salad unedited. Perhaps there's something here the resonates. You and your family are loved by so many and I cannot wait for Baby Girl to come and bring her sunshine and hope along with her. Will is going to be an awesome big bro! XOXO B

  2. Oh friend. I am praying. It is never selfish to believe in and fight for the miracle of life. So proud of your fight. So in awe. So believing in miracles for your family. We are with you. And yay for all of his new accomplishments!

  3. Love you guys...nuff said.
    Side note...Will is getting so BIG! Awesome!

  4. Hugs to you my friend. I can't even begin to imagine what it's like to traverse these emotions. I know the pregnancy hormones make even petty disappointments seem huge. The link cracked me up and I love the story about Will getting his walk named after him- I bet your heart just swelled with pride! What an amazing little fella you have.

  5. So this post really touched me, well honestly hit me hard, and I have been thinking about it since last week. And I have so many thoughts, but not ready to write all of them. But I will address Will's little sister. She is a gift, a miracle, and will be your joy. She was not conceived selfishly, but with love and for a family who will give her a great life. She will ADORE her brother, and yes, she will go through a lot of pain when she can no longer hug him and physically show him how much she loves him. But she will have a sensitive heart, and will carry a special perspective into the world as she grows...and the world needs a lot more people like that. I can't wait to meet her. And continue to hold on to that hope- hope is a really good thing. Love you, friend.

  6. Lori,
    I, like Elizabeth, was touched by this post and touched hard. She is right that this new baby will be a blessing to all of you. She will touch you in ways you don't yet know and she will be blessed with an amazing family.

    She will, like you, be heartbroken if Will passes prematurely but will, again like you, come to place where you can smile with the memories of Will.

    I am from a generation older than you and I know one thing to be true. Giving and receiving love is NEVER in vain. Will is so fortunate to have been born into your family. I know he feels love every single day.

    I also know that some days are harder for you than others. I can't pretend to understand what you go through on a daily basis. I'm sorry.

    I hope and pray something will be discovered soon to help Will and all like him.

    You continue to be in my thoughts and prayers.