Hey y’all, Tiffany here.
As many of you, know I have severe Crohn’s disease. It’s not easy sometimes. You have to be strong when you don’t want to be strong and just want to leave everything until tomorrow.
Last week, Phillip and I celebrated 8 years of marriage. In those 8 years, I’ve been admitted to the hospital around 40 times. That doesn’t include ER visits where I get to go home.
Some days are good, and I’m confident in who I am. Other days are difficult. Along with those ups and downs of health, my emotions go up and down as I go through the five stages of grief that typically come with the loss of a loved one, but also occur with a chronic illness diagnosis.
Recently, I came across a very old journal entry I wrote when our first child was about 5 months old. That was a rough time – I was hospitalized almost non-stop from when she was 3 months old to 8 months old.
Back in 2013
I wanted to share this post with all of you now, because even though I have had Crohn’s Disease for an entire decade now (and been on chemo-like infusions for 7 of those 10 years), I still have moments like this.
And you know what? It’s okay.
That’s why I’m sharing this. Not to get sympathy or pity, but so that other people who have hard times that seem to never end that it’s okay to break down. It’s okay to need to fall apart. Allow yourself that.
Even the Savior, when He heard of the death of his beloved cousin John the Baptist, took time alone to grieve. And in the Garden of Gethsemane, He took a few minutes before it began to brace Himself for what lied ahead.
You can put off being strong until tomorrow. Not indefinitely, but until tomorrow.
As I was scrolling through my facebook feed today, I found myself extremely jealous of every single stay-at-home-mom (SAHM) with pictures of their kids or complaints of messes or cute things said or done.
I want that.
Two nights ago, I came home from my 5th hospitalization in 3 months. This doesn’t include the additional handful of ER visits.
Yesterday, I was so tired and sick I could barely wake up when Lizzy woke up to eat and to pump. Then I had to put her in a walker for an hour and half while a nurse came to give me an IV and teach me how to do it myself for the next week. I then had to call Phillip to come home early from work because I was so weak and shaky, I almost dropped Lizzy and passed out several times going up and down the stairs.
Today, I had to let Phillip take her to someone else’s house to take care of her so I could try to sleep some more and “get better.”
I hate those words. I hate it when people tell me to “feel better soon.”
Because honestly, I’m not going to. I have chronic condition. So even if I make it into the most awesome remission ever, it won’t last because the price I pay for remission is an immune system so compromised that just a cold and a yeast infection led to these last three months of hell.
I am so tired.
I am tired of not being able to be a good mom.
Of not being able to raise my daughter. Of not being able to play with her even when she is home because I don’t really have the energy to get out of bed, so we just play on the bed. And of not being able to take care of her half the time because I’m in the hospital and can’t be with her.
Of her crying at night because Mommy isn’t there to hold her and she doesn’t understand. Or worse, that she’ll get used to me not being around and won’t be able to tell her Mommy apart from any other woman in the ward.
I’m tired of missing so many “firsts” because they’re done with someone else. And there’s no one there to take pictures or realize it’s her first.
Of worrying if she’s developing on time because so often I don’t get to take her out on walks or read books because I’m tired.
Or worried that she’s being ignored or put in the corner while whoever has her is doing their own thing with their family and kids and cleaning and whatever.
I find it heartbreaking and very telling that I have a bouncy seat in the bathroom for Lizzy.
I’m tired of not being able to be a support to my husband. Of him having to be both Dad and Mom. Of him having to not only work full-time, but then come home and make dinner and do laundry.
I try, I really do try, but most days I can’t. I can’t be strong all the time. And he can’t always make it up – there’s just not enough time in the day.
So the house is a mess, and I hate having to look at it because it’s just another reminder of how much I’m failing.
I’m tired of hospital bills. And doctor bills. And watching our budget not balance well because we spend at least a thousand dollars a month on medical expenses (literally).
I was tutoring to try to help, but I couldn’t these last few months. I’m tired of being a drain on the budget and not a contributor.
I’m tired of not being able to go to church. Of not being able to do callings and having to bail last-minute. And of not being able to make friends in the neighborhood and share the gospel and go to events.
Of forgetting to read scriptures and say prayers because I’m walking around in a fog and habits and routines get so messed up while in the hospital.
And of being a burden on my family and my ward, and of being just another charity case. Of looks and eye-rolling and sighs when once again we have to ask for someone to watch Lizzy.
I’m tired of being in the hospital with doctors and nurses who don’t care. Of being all alone there and having to fight my own battles when I’m sick and tired and in pain.
Oh yes, I am so tired of the pain. Of hurting all the time.
Tomorrow will be better and I will be strong
I know one day it’s going to get better, because I know that Heavenly Father is there and supporting me. I have seen so many miracles and tender mercies.
But today, it’s just hard. I’m jealous. I’m tired. Today, I just want to cry. So I am. I’m spending the morning having a pity party and crying for myself and my husband and my daughter. It’s not fair.
Tomorrow will be brighter and better, and I’ll move forward with renewed determination to get through. I’ll be strong tomorrow.
But not today. Today, I just want to be able to feel sorry for myself and not have to apologize to anyone for it. To be selfish and self-centered. To let it all out – to let out the hurt and frustration and anger and sorrow and pain. Because it all builds up, and today I just don’t have the energy to hold it back or reason through it.
I will be strong tomorrow. Just not today.
Today, I’m just going to hold on to Petey (my stuffed lion Phillip gave me my first hospital stay of our marriage) and cry. Wait for a lady in the ward to bring Lizzy home to me in an hour, then for Phillip to come home a few hours after that, then get an IV going. And pray tonight’s storm cancels work for him tomorrow so we can be home, the three of us, and heal. Because we need that.
But until then, this is my time to grieve. To mourn. To cry.
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