Thursday, July 26, 2012

Parenting From A Bed; Grief, Guilt, & Gratefullness

My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy during the day we forgive her :)

My son is 4 and half now.

My husband just left for the movies with my son, after taking him to get a haircut this morning.  When he left, my daughter started screaming, because she knows when she is stuck with Mommy watching her, we are confined to a bed, and she has to play with me here, or in her playpen set up next to the bed.  She is walking, and wants to run around, be held, picked up, and allowed some freedom to explore.

She knows that Mommy can't give her that, and so she now cries for a bit when she is handed off to me.

My son is a bit different, he was 2 when I became sick to the point of being bedbound and losing my day to day "normal" functioning.  I was gone for 9 months in the hospital and almost died while pregnant, and he remembers.  He is also older, and loves Star Wars (thank God), so he loves cuddle time with Mommy in bed either doing crafts, reading, or watching movies.  But he also knows that something is wrong, and that Mommy is not normal, and doesn't quite understand why I can't make it upstairs to his roo. He was very upset last week when the medical transport ambulance came to take me to the dentist, and still calls out for me every time he gets home - because there were so many times he came home and I was gone, sick again, back in the hospital.

It's been 11 months since I came home from my long hospital stay, and yes, things have gotten better.  My lungs feel much better (most of the time) and I can now tolerate longer conversations and visits.  I can stay in my reclined wheelchair and eat dinner at the table with my family a few nights a week.  My walking has improved and I feel a bit stronger, and for that I am grateful.

But I still can't carry my baby girl.  I have never taken her and laid her down in her crib.  I have never given her a bath.  When she wakes in the middle of the night, I can't help her, because I am at my worst, and can barely sit up.  I  have never left the house with her to do anything. The playground, a doctors appointment, a playgroup.  Nothing.  And now she is almost one, and won't be a baby for much longer.  So I grieve.  I have missed her time as a baby.  I have spent it with her in a bed, or watching her on videos my family makes of her outings. 

With my son there is guilt.  Massive, crushing guilt.  I am no longer who he depends on.  While I was away in the hospital, his Daddy (my husband) thankfully stepped up and took care of him.  I have never taken him for a haircut, or seen a movie in a theater with him, or am the one he runs to when he is hurt, because he knows Mommy is hurt as well, and he can't always rely on me.  We just moved back into our house, away from our temporary apartment near the hospital, and the master bedroom takes up the entire upstairs.  We turned it into his room because my blood pressure and heart rate do wonderfully un-fun things on stairs, I can't handle them yet, even on my butt.  There are 15 of those suckers, and they are my Everest right now - blocking my way to spending special time with my son. No tucking him in, being able to stay home alone with him.  He asks every single day if I am feeling well enough to come see his room.  And every day I have to say no.  I am suffocating under the guilt and sadness of this simple act being taken away, no more going to my son's room.

I write this not to share a "woe is me" tale of how depressing life is.  Quite the opposite.  I know there are others out there dealing with the same, and that can relate.  Through this incredible grief and guilt over what has been lost to my health conditions in terms of parenting and my abilities as a Mom, I have learned just how damn strong I am.  And just how strong the other parents and people with chronic illness are that I talk to each day.   And I have learned just how much I have to be grateful for though this entire experience.  I no longer take for granted little things that most people don't think about when going through their daily lives.  

And I am alive.  This may sound cliche or trivial, but when you have come close to dying as I did with the massive amounts of blood clots and pulmonary embolisms I had, it means A LOT.

A week before I had my daughter, I was hooked up to the baby monitor at 3 AM, in agony having what I hoped were real contractions so we could get the show on the road.   When you spend 9 months in a hospital, you get to know how a hospital works, and become friendly with the mostly amazing nurses, tech's, and staff that are there.  So when a code sounded over the PA, I knew what it was.  I heard the footsteps running down the hall and shouting going on.  Then another code sounded calling all hands on deck to the surgical room in that wing.  A few hours later when the morning rounds were made, I learned that a fairly healthy 24 year old woman died 8 hours after giving birth to a perfectly healthy baby, bleeding out for an unknown reason, dying while her husband held her hand on the table in the operating room.  This is only one of many stories of loss, death, and suffering I heard while there.  Whenever I get stuck on what I can't do with my kids, I remember that Mom.  I have no idea what her name is.  But she was only a Mom for 8 hours.  I'm very lucky and blessed to be here at all for my kids, even in this condition.

I will get better.  I know this.  I believe it.  I plow through each day of sucky health by focusing on my family and helping others, and pushing my hardest to challenge my physical limits.  I remember that I had a childhood, wild and crazy teenage times, and have done a lot in my 30 some odd years.  There are many kids with this condition that are missing out, and my heart breaks for them.    But I believe they will get better too.  What do we all have left if we lose that belief?

So I grieve, I feel guilty, and I am grateful beyond words.  What a combo.  My kids know that I fight for them, and one day when they are older they will understand why Mommy couldn't go to the park.  For now I will keep trying to enjoy the time I have with them, even if its playing in bed, or snuggling when I can barely move - because they know that they are loved.  And some day's that's all I've got.

And it's enough.    


  1. "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen."
    ~ Elisabeth Kübler-Ross

    You are a beautiful person.

    And your children will be beautiful people because of it.

  2. I know just a little of how you feel. When I'm stuck in bed, I feel guilty and sad that my dog is bored out of his mind. Anyone with a dog knows how much energy they need to expend per day. Sometimes he acts out by chewing something he shouldn't, but amazingly, for the most part, he adapts. He will bound into my room, but as soon as he sees me lying down, he gets up on the bed next to me and lies down. If I'm on the couch, he will bring me toys that I just hold while he tugs.
    I guess I'm just amazed that he doesn't act out more. On the days when I can play with him more, wow! does he have energy! I wish I had his capacity to run.
    Not the same situation as yours, but I thought I'd share. Illness robs us of many things. I've accepted my new reality for the most part, but still have days I mourn my past life. I'm sure your children instinctively know you are doing the best you can and feel your unconditional love. I wish the best for you.

  3. Hi Claire~

    I just want to thank you for this amazing post! I think I've been by before but just in case I haven't, here's my story - the short version!

    I was diagnosed with Dysautonomia/POTS/Reflex Syncope in 2007 after having Pericarditis post dental surgery following a molar extraction. I became homebound by the Summer of 2008 and have been pretty much completely bedbound since just before Christmas 2010. Thankfully, I am also blessed with an amazing husband and family like you. I have three daughters, two of which were still living at home when I got sick and have been such wonderful blessing to my husband and me. Until they each left for college (one in 2010 and the youngest last month), they were always a HUGE help. Even so, I have truly experienced the gut-wrenching grief, guilt AND gratefulness that you describe here in your post. I have missed SO much of their years of being in high school...first days of school freshman year, Proms, Band Concerts, Marching Performances at Football Games/Marching Competitions, Honor Award Nights, Graduation, etc. Then as college rolled around, I missed helping them shop for all the items for their dorms and was unable to help move them in to their dorm and decorate. In fact, this weekend is my youngest daughter's first college marching performance at a football game...and it is a major one! I am SO bummed that my husband and I could not go and support her due to my illness.

    The time really starts to wear on you and it often allows WAY TOO MUCH time to think! I start to wonder what other major life events I'm going to miss. I've already missed so much and I don't want to miss another thing! I know God has an amazing plan for my life and I know He can see the big picture, but it is often hard to keep my head wrapped around that. I tend to get depressed, but then I stop and do what you mention here in your post. I start remembering and thinking about ALL I have already been blessed with in my life, ALL I have already accomplished in my life and the fact that I AM alive and can continue to watch my children as they continue to become mature adults, graduate from college, get married, have my grandchildren, etc.

    Yes, I have really stinky days and so does my husband. But we also have some really great days and that makes it all worthwhile. God has a purpose for me....for all of us, and I can't wait to see what it is!

    Thanks so much for sharing your story! May the Lord bless you and your family. You will be in my thoughts and prayers.


    Teresa <><

  4. I love your site and have two small children as well. It is a difficult thing to live with. I just wanted to see how you are doing. It has been a while since you last blogged and I hope you are not on here because you are able to do a little more. Thank you for putting great information out there.

    Take care,


  5. You are able - to help the millions you have who are going through the same thing. Thank you! You will hear many people give advice on treatment, but I (having hyperpots) swear that Norpace CR has substantially helped me get out of that and brought at least the heart rate swings to a minimum-now if only the bp swings would get better...hang in there. You do make a difference!