I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Sunday, March 31, 2013

The Universe Does Not Care

Spoiler....this is not a happy, uplifting, optimistic post.  Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.

I know I am lucky in so many ways.  I have the most wonderful husband, daughters, parents, and friends I could imagine.

And, I need to remember that because I have not felt very fortunate lately.  I know there are many, many people less fortunate and I am so thankful for what I do have.

But, lately life events have been a reminder that there is no "pass on the bad luck card."  We already have two family members with chronic diseases.  Isn't a husband and daughter with Type 1 enough?  It already takes so much of our time, energy, emotional health.  So many families (and I am truly happy for them) seem to have healthy children.  So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?

The universe does not care.

Courtney is supposed to be my healthy daughter.  The one I don't have to worry about every second of my life.

Life does not work this way.  I know it from my patients.  And, I know it from other families.

But, it is still devastating.

Courtney was likely born with an abnormality in which part of her brain is too big for her skull.  It is pushing down on her spinal cord and blocking the flow of her spinal fluid.  It is creating a cavity in her spine, which if left could result in paralysis some day.  It is creating scoliosis for which she has been such a trooper wearing a brace.

She needs brain and spine surgery.  They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.)  They assure me she doesn't need these things.  But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery.  But, we have seen two surgeons and they both recommend the surgery.  According to one of them "the complications are rare but devastating."  She is totally, completely healthy and with no symptoms right now except for her scoliosis.  It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay.  She will be in pain and scared.  And, she is supposed to be my healthy child.

Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out?  Why can't we have the normal scrapes and bruises of childhood?

Why, why, why do both my children now have a BIG, serious, SCARY health condition????

The universe does not care.

And, this may not be it either.  There is no pass on the bad luck card.  There may be even bigger and scarier things ahead.  And, that is a terrifying thing to realize.  Having two children with these terrifying, horrible things does not guarantee they will not get something else.

So many feelings from Jessica's diagnosis reemerge.  Will I be able to do this?  Will I be what she needs?  How will this affect her?  The anguish, the fear, the defeat.  God, can I do this again?

And, a whole different layer.  Who will care for Jess?  Where is the best place for her?  She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions.  How will this effect her?  And, for the first time since her diagnosis the focus on health is not on her.  She clearly has felt the shift.  Unintentionally, she is clearly trying to adapt to this.

I wish I could just say "pass."  Sorry, we already have our hands full dealing with two of our family members having Type 1.  Nope- we can't do this too.  But, the universe does not care.

Luckily family and friends do.  As we took awhile to learn with diabetes, it takes a village.  We could not handle diabetes well without our Children With Diabetes family.  I don't think we could make it through this without our friends and family.  We are not fun to be around.  We are an unpleasant reminder that bad things can happen to everyone's children.  And, there is no limit to these bad things.  Yet, a handful of friends has come forth and stood by us.  While we have been disappointed in some, we have been amazed by others.  Our parents have been a steady source of support.

And, so I am reminded of the powerful words "I can do this."  Once again, I can do this because I have to.  I don't have a choice.  My family doesn't have a choice.

So, we will do this.


  1. I'm crying reading your post, Tamara, because of course this is devastating and overwhelming. If life were fair, you should be able to take a pass on bad things happening, because you are already 'full up' with two type 1 diabetes family members. I started crying when you asked yourself, "Will I be what she needs?" My immediate response was 'YES!' You are her mother and you will always be what she needs, no matter how helpless you feel. Not knowing the answers or not being able to take away her pain and fear is hardest for you, because as her mom you feel that is your duty to do anything within your power to give her answers and take away her suffering. But, all she needs is your love, support, and always being by her side, going through it with her.
    Also, I am a bit outraged that the ICU won't allow Jess (have you asked them if it's possible to bend the rules?) to visit her sister because of 'age restrictions'. I call bullshit on that. It reminds me of the picture I've seen on facebook of the baby twin girls, one of whom is struggling to live, and when they put both sisters in the same incubator/crib space, the healthier sister put her little arm over her sick sister, and that child's health started improving. You cannot tell me that having Jess in the ICU would be anything but beneficial for Courtney. I hope they will allow her there, and I hope you can get a good hospital advocate to push for that for your family.
    Keeping you all in my thoughts and prayers...

  2. Oh my! That is a scary situation to deal with for all of you! I don't think there is an easy way to get through something like this, and there are surely no easy answers.

    We'll be pulling and praying for you guys.

  3. Oh nooooo. Im heartbroken, devastated........so MAD for you too!! ((HUGS)) Endless prayers for you and yours!

  4. I can't think of anything I can possibly say that could make things even a little bit alright. So I'll just let you know I'll be holding all of you in my thoughts.

  5. Whatever you need from me, please ask & consider it done. For now I am sending lots of love, prayers and positive vibes to you all.
    And I love you guys so much!