Friday, July 16, 2010

Mommy brain

When you have a sick child you do what needs to be done, I can say at times I don't think about what I'm actually doing until after the fact, things that no mother should ever have to do to their child. When Kyle was in PICU a few weeks ago and the PICU dr was explaining some things to me I totally lost it, which if you know me well is actually unusual, I have gotten pretty good at stuffing these emotions and waiting until Mark and I are alone to lose it....but as I explained to the mommy brain is medical brain understands the things that need to be done to keep Kyle with us, but my Mommy brain aches and hurts. For years I really felt like I could hold on to those emotions, the Mommy emotions and shut them off....lately that seems impossible. Everything seems to hurt, and when it's not hurting I'm angry or sad.

We are still at home, and for that I'm incredibly grateful. Kyle's blood numbers are still dropping which isn't good...we are waiting for some OR time to go in and look and make sure there are no obvious reasons as to why the numbers are dropping. We are still messing with med dosages and hoping we can find the right combination to control the vomiting better and to be able to start feeds again, so far thats a no go. Still waiting on's hard to wait with Kindergarten looming over panic over that is in full force. Although Kyle is beyond excited.... :)

I need to address some questions we have gotten over the last few weeks. Many have asked about a transplant for Kyle.....I should say that we are in no way looking at that right now, we have a long way to go before we get there, many more options to try....while it may seem like we are at the end we aren't...a transplant is the end card one we hope to never go to. For Kyle he would need a very in depth and complicated transplant. His entire bowel, colon and stomach are all affected. We have been told the likely hood of him surviving that are not high and so for us we will keep fighting and trying until they tell us there is no hope. We know that at any day we could lose Kyle, that is something that we live with daily...we try very hard to not let it rule our lives but it's hard. We are working with the palliative care team at the hospital which has been helpful so far....we are doing everything we can to make Kyle's life as happy and normal as possible. We do as much as we can at home and are so lucky that his dr's trust us to care for him in the capacity that we do. I want to stress that Kyle is stable and safe, but he does have a life threatening condition and that has been a difficult thing to swallow.

I'll admit, I'm struggling. I don't want to go back to Columbus, it petrifies me. What we'll hear, being away from Alex and Jack and our family. I struggle daily with how to keep explaining to the other kids why Mommy is always away taking care of their amazing as the kids are this is horribly hard on them to. We won't leave Columbus until Kyle is better, at this point we need the best of the best.

I don't know how to thank people any more...I say thank you but I feel like it's not enough, the kindness that is shown to our entire family is overwhelming and so appreciated. It's been hard to admit we need help..



Shari said...

Kate: You have stuffed your emotions so long Dear that at some point they are bound to overflow. Allow yourself to be sad, hurt, mad. I know it is so very, very tough! I am rooting for your baby and hope you can get some sort of answers soon! Praying!


Lauren said...

Don't you waste one ounce of energy worrying about saying thanks... not a one.
We love you guys like crazy, keep you in our thoughts daily and hope with all our hope that Columbus comes through quickly and effeciently so that you can all be home again together where you belong.


Jackie said...

You know if there was a way for us to take away even an ounce of pain from your family, we would all band together and figure it out.

Sending you big hugs,

Jessica said...

Kate, my heart aches for you. I share some of your fears...the thought of a transplant in Kobe's future makes me sick to my stomach...I pray we never have to go that route...and that Kyle doesn't either. I admire your strength, especially being strong enough to know when to ask for help and when to fall is all part of this journey.

Love, hugs and many prayers to you and your family.

Tommie said...


I simply cannot imagine how you've managed the past five years, other than going on mother love alone. You are amazing, as is Mark, Alex, Jack and most especially Kyle. I am sending love, hope, prayers, good thoughts from Indiana to you.

Anonymous said...

Kate- you are one of the most inspiring people I know, all while being blessedly, wonderfully human. You ARE superhuman, yes, but still HUMAN, nonetheless. You and your family have endured and navigated far beyond what most could ever imagine. As lousy as it probably felt to "lose it," I am relieved. Everyone has their points when howling hopelessly at the moon is the only thing that makes sense.

We are praying constantly for all of you, including your medical team. You might hear us howling down the road from you, too. Solidarity.

Xo - Pam

Sarah said...

Thank you for the update. I can't even begin to imagine the pain you feel. Quinn is a fraction of what Kyle goes through and there are still days that i wonder how we ever got through it this last time. d


Leigh, Tucker's Mom said...

Oh Kate,
Stuffing emotions down is so tiring...but I know sometimes it seems easier to stuff them down and just do what has to be done.
I want to thank you for sharing Kyle and your family's story with us, you all amaze me and inspire me.
I hope relief is in your near future

Heidi said...

(((Kate))) I dont know what to say, heartbreaking. Kyle and your family is always in my prayers. Thanks for keeping us updated. BIG HUGS to the bravest boy I know-
Heidi & Jack.

olga said...

hi... we don't know each other, but i linked to team kyle through kristina s-b's facebook post. my heart goes out to you and to kyle, from one mother of a blue-eyed blondie boy with medical challenges to another. for what it's worth, there's a lot of research coming out about parents like us and post traumatic stress (or IN traumatic stress) -- knowing that helped me put a name to what was going on inside my head and heart. you are a warrior, with all that comes with it.
sending all my love to your beautiful ones.
- olga in seattle