I'm pretty jealous right now. I'm jealous of all the people who have perfectly healthy babies. I'm jealous that they get to wake up in the middle of the night to their cries. I wake up in the middle of the night to emptiness.
I'm jealous of the people who complain about their children. Who are so tired of their children asserting their independence and personality. And I know it has to be hard to be a parent of a 2 year old. But I would give anything to know what would have set James off in a temper tantrum. And I know it's silly, but I wonder what it would have been. Would it have been what he wore? Or a special toy? Or shoes? What would he have been particular about?
Ok- and I told you I am on a roll with the jealousy- I'm even jealous of breast cancer research. I know, weird. But I was trying to do some research on rhabdoid tumors and whether they could be caused by an epigenetic response (basically if something like nutrition could cause a change in the proteins on top of the DNA that would cause the change in the gene). There is so little research. So then I was trying to do some research on breast milk and whether that has an effect on your DNA. I searched probably 15 scholarly journals for "breast milk". Not a single article or study came up about children. However, thousands came up about breast cancer. And I don't think there shouldn't be research about breast cancer- I just am jealous that we know so little about AT/RT and I wish we knew more.
I'm jealous of people who get to have normal lives. Who get to go to Gymboree. Who get to play with their kids. Who get to hear "I love you Mommy", even if it is few and far between. Who get their own version of "Jamesie kisses".
And I know the pain that happens when you lose a child first hand- its awful. And I'm not here to say whether deciding that is right or wrong for them. But knowing what I know now about what all would have happened, I can't imagine my life without James a part of it. Even though he's gone, he is still very much a part of my life. But then, also knowing what I know now, I would hate for him to have to suffer. As a parent, you never want your child to suffer.
Maybe this experience has shown me that every decision is not always black and white. Most are shades of gray.
I know I am so random. This week is really rough. If you have an extra prayers, I would be forever grateful if you would send them my way.
Oh, how I wish we were having that party this year. That we were the ones blissfully unaware of just how painful life could be.
Kara - I have read your blog for several months, but have never posted. I am so sorry for your loss and I'm so sorry that nobody can give you back what you really want. I can't begin to imagine how that feels.
ReplyDeletePlease continue to know that there are so many of us in internet-land who support you as best we can through pray and well-wishes even though we haven't met you and live in other places.
Maybe it would be a good distraction, even for a few hours, to do just that -- put sports programs on every tv in the house, invite some friends over and yell at the tv while you munch on snacks.
ReplyDeleteI know that it isn't the same situation at all, but every year on my brother's birthday, we make cupcakes and light candles and blow them out together for him. It might be silly, but it makes me feel better.
>hugs< Miss ya!
Keep being real, keep laying it out there...We hear you, we mourn for him too, we are praying!
ReplyDeletepraying EXTRA EXTRA hard! thank u for sharing the beautiful pics. i grieve for u to have those special perfect moments again. my heart, my love goes out to you. thinking of u as always thru this impossible time! hold on kara.
ReplyDeletejames is so beautiful!
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ReplyDeleteKara,
ReplyDeleteYou don't know me, but I am also one of your many internet-land readers.
I wanted to comment about your breast cancer research jealousy. I also came across the story of a 5 year old girl who passed from a brain tumor (a reader posted a comment here about it and I followed it.) I became a fan of their facebook page and they mentioned the same thing that you did about breast cancer research. Breast cancer research has, I believe, 6 times as much funding as childhood cancer research. The tumor that their daughter died from has a diagnosis that hasn't changed in 30 years.
I'm definitely NOT saying that the funding for breast cancer research shouldn't be there (I have a friend who is battling it right now) but the awareness for childhood cancer needs to be raised so the funding can reach the level that breast cancer funding has.
I don't know how I'm going to do it yet, but your story and your James has inspired me to find some way to do my part to contribute and raise awareness. Nobody should have to go through what you are going through. You are a strong woman and I pray every day for you, your husband and your son.
"The tumor that their daughter died from has a diagnosis that hasn't changed in 30 years."
ReplyDeleteThat should have said that it has a prognosis that hasn't changed in 30 years. Sorry.
i understand your jealousy issues. i struggle with jealousy myself. it's just not fair. and i'm so sorry.
ReplyDeletei am praying.
ReplyDeleteOh sweet Sikes family...I have been reading about your precious boy since you were in the hospital with him. I am so excrutiatingly sorry for the loss of your sunshine. I wish there was something I could say that could ease your sorrow and grieving process. Know that I will be on my knees praying for you, as you navigate this life without James. I am so sorry.
ReplyDelete~in Him
Stephanie
We had a very rough start with Tristan, at 10 days old he turned blue in his car seat. After rushing him to the ER and an excruciating 4 day hospital stay he was diagnosed with severe reflux (after being told it could be CF, cardiopulmonary defects, etc). It was truly hell on earth watching my tiny 5 lb 13 oz son be poked with needles, hearing him scream and not be able to do anything to help. He would choke and turn blue several more times before outgrowing his reflux at 4 months. I remember the jealousy I felt of people who have easy newborns who can sleep in their cribs and not have the needles and medicine that tastes awful. Not feeling like their baby was a fragile egg and the slightest wrong move would harm them. I know the jealousy. I don't feel ashamed of it now, because it has turned into gratitude. Most will never know the heartache of a life-threateningly sick child; there were many times we nearly lost him. I can't tell you why God chose to keep him here, and I pray you don't take this as though I'm being insensitive, I just want you to know there are people out there who understand the jealousy. It's all part of your grief, thank you for being so open and honest, your journey never fails to humble me.
ReplyDeleteYou are in my prayers. My heart breaks for your sweet family.
ReplyDeleteI continue to daily pray for your family. James is such a beautiful boy, thank you for sharing your pictures of him. The pictures of James always put a smile on my face, so precious. Sending extra prayers and hugs your way.
ReplyDeleteStill praying daily for you. Hang in there :)
ReplyDeleteStill here, still reading, still broken-hearted in internet land for you. I continue to pray over your family and wish I could take your pain away. No one should have to go through what you did. Thank you for sharing such wonderful photos, makes me want to comfort his cries and ruffle his cute little head of hair. Blessings for continued healing.
ReplyDeleteI was just thinking the same thing the other day about breast cancer research. How did we become so "aware" of breast cancer? How can we do this for other cancers?
ReplyDeletePraying!
ReplyDeleteLong time reader, first time poster. I think about you everyday and I cry for you while I read your blog. Sending love, prayers and warm thoughts...
ReplyDeleteKara, you were in my dream last night. I was at a store with my 2 year old and I saw a toy bear that was dedicated to James and I was showing it to my son. When I turned around you were there. I went and hugged you and prayed for you and told you how I was sorry I didn't have anything more to give you. I just wanted you to know that I think of you and James often and I'm praying for you and Matt.
ReplyDeleteI'm praying for you and sending love and well wishes your way. James is always in my mind (every time I see a giraffe... which is quite often actually!). My daughter and I talk about him quite a bit too. He's touched our lives even though we've never actually met. Hang in there.
ReplyDeleteKara & Matt, I'm so glad you are still posting. It's hard when someone stops posting and you wonder if they are okay. Thanks so much for sharing and letting us know how you are coping.
ReplyDeleteAs far as jealousy ... I am jealous of pregnant people who are coming up on "my" due date, so I know what you mean. It's hard because I just plain want some of what they've got. Hope and anticipation and joy-in-the-moment.
One thing is certain: life changes. I know that God is going to lift you up and bring you more joy & more comfort. So many people are praying for you and I know your Father hears. He loves us.
I adore every photo of your son. He is beautiful. You are amazing parents.
Thank you,
Tracie Richey
"Maybe this experience has shown me that every decision is not always black and white. Most are shades of gray." Such truth in that statement. If we could embrace that idea more, we would experience more 'peace & love' because we would have less of a 'judgment of others' filter to look through.
ReplyDeleteAll that you feel is totally okay. So please don't harbor any ideas that you should not be feeling jealousy. Honor your emotions. They are what they are because you 'need' them right now. I know you don't want it to be this way, but one day you will be ready to 'move' to your next stage of life. Right now it is about fully experiencing the mourning of this precious little soul who you loved and adored. So 'fully experience' it. But do not think because people have different experiences than you, that there are others who actually do live perfect lives. It doesn't exist. And it's not supposed to. These emotions, low and high, are part of what made you able to love this little boy so very much in the first place. We wouldn't wish those away for anything.
At some time though, when you feel like you are at least a little 'open' to it though, you might want to think just one little thought, in that moment of despair, that makes you feel just a tiny bit better. (Maybe like what you have expressed, how thankful you are to have had him for the months that you did.) So you don't get 'stuck' in a sea of despair. James IS still, just not on this earth. And I am certain that the love he came to show you, was not meant to get stuck in that lower place. But relished, focused on, experienced, and treasured.
You are right, in that there are many people, living many different types of life. But there truly is no one who has not experienced pain. No matter what it looks to us from the outside. And while what we are going thru may be the worst pain we have ever known, we just cannot decide for another how some experience is for them. That we are in a much more 'extreme' place in regards to pain. It's just not possible for us to know what those experiences are like for others. Just as others cannot know about our level of pain either.
So we do our best to honor ourselves and our emotions first and foremost. Allowing ourselves whatever we need to experience. And then we honor the love that this precious baby boy came to truly show you. And we give it to ourselves, and then outward to all of those we come into contact with, to whatever level we can.
My thoughts and prayers are with you and your husband. May all you need come to you at just the right time.
Sending lots of thoughts your way, especially this month.
ReplyDeleteKara~
ReplyDeleteI have been following your story for several months now, right after sweet James went to be with the Lord. I am so sorry for the loss of your precious boy and my heart as ached for the both of you as I have read your words of hurt and loss. I understand the feeling of jealousy. 5 weeks after my second son, Logan, was born he was diagnosed with Cystic Fibrosis. I can remember feeling jealousy of some of my other close friends who had also just had their second children. They were able to just deal with the normal new baby things and adjusting to life with 2. I was also dealing with new baby things, adjusting to life with 2 under 2, but along with that adjusting to what is our new normal. Treatments everyday, enzymes with every meal, extra dr appts every 3 months with CF centers, and then the worry of what the future holds. I really felt like I went through a time of grief, grief of what I thought our life of a family of 4 was going to be and also what I had pictured Logan's life to be like. All that to say those feelings were very much neccessary. I needed to allow myself to feel all of it so that I could then see the beauty in all of it. And I also understand about the BC awareness everywhere. I know it is 100% vital to have awareness and research for BC but also needs to be for all cancers, and for my cause Cystic Fibrosis. I so wish I could see a ton of purple ribbons, purple appliances, and all the other thousands of things that they put pink on, during the month of May when it is CF awareness month. I am praying for you both and thank you for being so honest. Your words put perspective into my life!!!
Blessings,
Michaela
Kara - you and Matt are constantly in my thoughts and prayers. Your precious James will never be forgotten.
ReplyDeleteThinking of ya'll
Hannah
Kara - I just want to say the jealousy is so totally normal. So many people have already told you this, but I thought I'd throw in one more. I've been reading for a while and praying for your family. I don't want to say I know your pain because everyone's is different, but I have walked the path. My first son, Logan, died at 17 days old, he was born 15 weeks premature and just couldn't overcome the complications. He would be 3 years old now and we've gone on to have a successful pregnancy and now have a 1 year old. After Logan died I was so jealous of everyone I knew that was pregnant and even those who weren't pregnant but would be, jealous of their innocence and naivete. I thought that when I got pregnant again (we had difficulties in this area) I wouldn't be as jealous anymore, I was wrong. Then I thought when my son made it here safely the jealousy might go away, wrong again. I am still jealous of people who don't fear losing their child, I wish I was one of them. I'm also jealous of people who have an older child, who have Big Brother shirts, in addition to the Little Brother ones. I know it doesn't make you feel any better to hear this, but I do hope it helps you to not feel alone. So many times in my journey I wondered if I was the only one out there who felt this way. I'm not and you aren't.
ReplyDeleteKnow that I am continuing to pray for you and your family.
Anna
Kara
ReplyDeleteI understand your pain. I've actually been in your shoes, sadly twice. You should consider another pregnancy, not to replace James, but for a chance to love and be loved by another child. You both have so much love to give and are so deserving of having that "happy life" that you are coveting right now. Just because James had to die, doesnt mean you should never have another baby in your arms. Trust me. I've been there and the pain will never go away completely nor ever be replaced by another baby. Go for your happiness. That should be your focus now.
I am sorry. Thanks for your openness. I will be thinking and praying extra hard the next few days.
ReplyDeleteKara I have been following your blog for a few months now & want to let you know that I think of James often. I wish other cancers got more of the research dollars that breast cancer does too, and I say that as someone who has lost family to breast cancer.
ReplyDeleteI am so sorry for your loss. x
hi kara,
ReplyDeletei am so sorry for your loss first off. i think of you and james often. i wanted to write here to let you know that what you are feeling is not in vain. since following your story - i found you only a week or so before james passed away - i have held my kids little tighter, i kiss them more often and i dont let the the little things bother me. thank you for calling us out on these things and to remind us to be grateful.
i too am sorry that there is not more research out there for sweet babies like james. my mom currently has stage 4 metastatic breast cancer and although there is tons and tons of research this disease will still take her life way too soon. - i know soon is a relative term :) -
i know people probably give you a ton of suggestions and advice on what to read and what to listen to but my pastor just did an excellent series on God, called When God? - when He is inattentive, when He is uncooperative and when He is late.
It was an amazing series. You can listen/watch online here: http://www.northpoint.org/messages.
praying for you and matthew.
I have read your blog for a while but never posted. You are being so honest and real with your feelings and I think that is very brave of you. I will continue to pray for you and your family!
ReplyDeleteI'm so very sorry, Kara. If only, if only, if only.
ReplyDeleteI have felt the jealousy, too, and I feel it daily now. I also know the perfect people with the perfect lives, those who write me email updates about how ideal and wonderful their lives are, as blow after blow amazingly descends upon me, and my life becomes less and less normal every single day. I think, "How inconsiderate," but I suppose before tragedy strikes, we don't know just how gut wrenching and devastating it is.
God will help us persevere in our time of heartbreak.
I pray that you will be wrapped in God's loving embrace and feel his constant presence, be blessed with his perfect peace and his comforting hand that binds up broken hearts. May his strength and love reach down and carry you through.
Love to you.
Praying for you extra and putting my hope in the Lord that He will give you just what you need for each day.
ReplyDeleteKara, I want to hug you. Give you a big bear hug. I want to snap my fingers and bring James back for you. For different reasons, I empathize with your jealousy issues and please please please let it all out without any apologies. Lately I feel like I'm surrounded by people who have NO IDEA how lucky they are. I think of you and James and your sweet family so often. I am saying extra prayers for you. I wish I had magical words of healing.
ReplyDeleteMuch love and light to you.
Kara,
ReplyDeleteI feel you on this one! I try SO hard not to look around at other people... People whose husbands don't battle brain issues... People who seem to "have it easy"... UGH! It is so hard NOT to look around!
I have no solution for you... only sympathy. Hang on girl! just hang on!