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Yes, yes, and yes! As the mother of a little one diagnosed with cancer when she was only 2yrs old- all these emotions live in my heart, too. As she has endured 7 surgeries, chemo, radiation, dozens of hospitalizations, hundreds of trips to the hospital, long term complications, at-home medical procedures, home health nursing, PTSD, etc. I have struggled to keep it together. Parenting is so hard and draining even on a good day, parenting a medically fragile child is like a sick, tortuous marathon. When your child hasn't slept in days, is recovering from surgery, is in pain, and sick from chemo it is so hard to deal with every tantrum with love and grace. I remember one particularly hard day when she really wanted to eat but everything tasted bad to her. As I made the twelfth plate of food she would be unable to swallow I couldn't help but sigh. As her big brown eyes looked up at me and said, "i promise I'll try to take a bite" a little piece of me died. It's just all too much at times. And as they get older and can plead and scream at you to stop letting the medical personnel hurt them as you hold them down or beg you not to hurt them again with daily medical procedures- another piece of your mama heart dies. It is one of the hardest jobs there is and I salute your honesty. Over the past 4yrs we have lost so many little cancer warriors that have fought along side her. After 32 children's funerals we will never be the same. As we try to cherish every moment as a gift, we have to be honest that the gift is not always happy, but it is still precious nonetheless. Through it all we keep our HOPE, cling to Jesus, support those around us, share our struggles honestly, and live with anticipation of eternity. Praying for moments of peace and rest, and for Christ's encouragement and strength for you!
#1 Amber (Homepage) on 2014-08-19 19:53
When he gives "too" much of the bottom picture is when you need to give him away to a Grandma or other suitable lover for a short while so that you can recharge and enjoy Zoe for a bit. Then you will be ready to bounce on the ball again, or maybe get one of those top picture moments. Keeping all of you in prayer, and looking forward to more good news as the days go on! Love Nicky
#2 Nicky on 2014-08-19 20:23
Well said! Being grateful for a precious life doesn't make it rainbows and unicorns all the live long day. Thanks for keeping it real. You have a lovely family!
#3 A&EMom on 2014-08-19 20:50
Oh wow! Every..single..word in this entry hits home for me! Thank you for writing it! My heterotaxy warrior was born one month ago, and this is exactly where I am at in the emotional sense. This is our first baby, and I still don't have a flipping clue what I am doing! I wouldn't trade it for the world, but I would certainly give up one of my limbs just to be able to take home one of her nurses from the hospital to help me out a little! God bless you and your wonderful little munchkin.
#4 Monica Bloom on 2014-08-19 20:55
Been there, done that with my son Alex. He was born with a blockage in his urinary tract & at 5 months he had a nephrouretorectomy. Most people tried to comfort me by saying people can live with one kidney; but what they didn't realize was his bladder was also damaged - that was the biggest concern. As a byproduct he also had idiopathic reactions to his meds which meant he never stayed in a deep sleep unless he was being rocked. So at night he would wake up an average of 5 times a night screaming & during the day I spent most of my time groggy, nursing, or rocking him for a nap (sometimes up to 3 hours). This lasted for three years & gradually improved by the time he was five. So I get the exhaustion. The good news is God can heal & at 18 years old Alex was released from his surgeons care.
#5 Janis Cameron on 2014-08-19 20:59
Yes times a million I've been feeling too guilty to say exactly this out loud! I needed this post. Thank you!
#6 heather on 2014-08-19 21:13
I agree!! On every level. I know what it's like to be a zombie pacing through a dark house bouncing a screaming baby and bawling because no one told me there would be so much of this. Of feeling guilty for sneaking some food I so desperately wanted in a moment of "weakness" then having to face a child screaming inconsolably because of my milk. Of wearing a path in the grass from hours of pacing with a colicky baby because the crying seemed quieter outside. Of being afraid to ask for help because it meant presuming to inflict a screaming child on someone else. Finally, I remember the lovely women, including a certain Aunt Ali who just scooped up the screaming child and bounced away wjile having a real conversation with me. My children aren't special needs and it's hard enough at times. We're continuing to keep you guys in our prayers!
#7 beckie on 2014-08-19 21:51
Why does the crying seem so much quieter outside?! We paced the backyard for a while today for this exact reason.
#7.1 Ali C. on 2014-08-19 22:07
There's more to look at and listen to as well. Micah was always a fan of outside. hugs from Canada!
#7.1.1 Beckie on 2014-08-20 08:39
You just validated so many thoughts and feelings I've had in the past 4+ months. My daughter, born in April, has been a night and day difference from my two year old son. He was relaxed, easy going, and I could almost guarantee that I could get him to fall asleep any time by nursing. He would let my husband soothe him when he was upset, so it wasn't all on me. My daughter, my dear sweet, planned and anticipated lovely daughter is so much more high strung! She WON'T fall asleep nursing (unless its already the middle of the night and she is mostly asleep anyway) but getting her to fall and stay asleep day or night is just a terrible, screaming nightmare. And she WILL NOT let daddy soothe her, his trying just makes it worse. Some nights it takes hours. And hours. And hours. And I sometimes legitimately have things I need to get done without a baby attached to me, and would happily do those things once the kids are asleep at night. Or would love to even have an adult conversation with my husband. But when I can't get out of bed because it will poke the bear...errr, I mean, wake the baby...it's hard to keep it together. Mentally, emotionally, I am just drained. I love my babies more than life itself, but somethings gotta give (and it's looking like it will be my sanity). I've struggled with a lot of guilt the past few months because I feel like I shouldn't be thinking and feeling some of the things that I am. Thank you for the reminder that some days really do just suck, despite having so many things to be thankful for.
Ethan (and Zoe!) is beautiful, and you're doing a great job mama. Hang in there!
#8 Cassie on 2014-08-19 22:04
I found this through a friend's Facebook feed. After a long tearful day (for momma and baby), reading it was such sweet encouragement. Thank you.
#9 Laura on 2014-08-19 23:38
Ali, you are so right and so eloquent. Bless you for getting this out instead of just taking a well deserved nap. I know I'll never forget the long nights and endless challenges I had as well. I often thought, "well, this is what I deserve since we figured we knew better than God since we HAD to have the second child and rather than rest in His timing I went for the pharmaceutical assistance." These were the musings during my endless nights that revolved around the constant breast feedings where I had to coax out via the torture devise known as the pump since my 3 lb, 28 wk preemie never dev'd a suck reflex. So after slowly dribbling warmed breast milk via a large holed bottled and making sure his apnea monitor didn't screech because he was getting too much vagal stim rendering him blue and floppy. I'd then have to start pumping again after changing him and getting him back to sleep. Although the feedings started getting a bit further apart after a few months it didn't seem a whole lot better since I had to resume my residency a few weeks later and I looked like a raccoon all the tome because I was exhausted and i fell asleep with my face on the microscope nearly everyday.

So, 22 years later I remember it like yesterday but shake my head in amazement at how it was all worth it when we watched him graduate from college last May.

Tuck all of these memories away in your heart as you thank God for what He's got planned for all of you as you watch this adventure unfold.
#10 Ann Secord (Homepage) on 2014-08-20 03:23
My first child has been the toughest so far as newborns are concerned. She had her nights/days mixed up, wouldn't sleep for more than an hour or two, had the worst colic (5 or 6 hrs a night of straight rocking/bouncing/whatever I could think of before an hour or two of sleep.) She was a very alert baby and never wanted to miss anything - so I was one beyond tired new mama.

My second baby has been the opposite entirely. Super happy to cuddle, sleep, play. He's very relaxed. Although, now that he's almost two - its up for grabs if he's still the relaxed baby now! haha

Thankfully, I had lots of encouragement and support from my husband, friends, family and God himself. But there were days I truly struggled(tears, sobs, the whole gambit) and still do at times. I will say hang in there mamas and dads! God gave us these little lives to raise - so you know you're on the right path. Its not always easy or even slightly pretty but totally worth it!
#11 Sarah on 2014-08-20 09:36
Wow, Ali...I SOO needed to hear this today. I am fortunate and blessed to have a baby without any major health issues, and yet today I am still complaining about being exhausted and not knowing what to do when my 6-week old screams at me...God really led me to your page, yet again, in this moment...if only to remind me that I need to get out of my own head, and that sometimes, being a mommy sucks...and it's okay to admit it. You are so right that we moms are often made to feel like we can't talk about the hard parts, and the worst thing is that this feeling usually comes from other moms...(sometimes, it even comes from our OWN moms, the ones who should actually be encouraging us). Thanks for saying all of this...and I am rejoicing with you that your little warrior is doing so well!
#12 Ella-Kate Trice (Homepage) on 2014-08-20 13:31
Thank you for posting this. We didn't bring home our first baby, so when we got the chance at a second we were thrilled and ecstatic. And then reality set in. She didn't like to nap or sleep or nurse or swing in a swing or do tummy time or anything else, really. She cried. A lot. And she fought sleep. I dreaded bedtime because it meant 4-5 hours of rocking, nursing, bottle, begging, crying and screaming before we both finally exhausted ourselves. I couldn't figure out why my baby wasn't like other babies, why I was miserable when other moms were glowing with pride. It wasn't PPD. This mom crap is HARD. I made a humiliating admission to another mom the other day. As soon as I hit send in the chat I wanted to take the words back. I started backpedaling backpedaling backpedaling, and then she responded with the two sweetest words I've ever heard: "Me, too." I think if we moms said that to each other more often motherhood wouldn't feel so lonely. (PS - I'm an August 2012 BBC mom like you. I'm definitely one and done because of how hard dealing with a newborn is!)
#13 Cheryl (Homepage) on 2014-08-20 13:51
Yes a million times! Abigail has always been my needy one, my never sleeping, tantrum throwing girl...from day 1. She is beautiful, smart, funny, and extremely wonderful girl but she really really really gets on my last nerve. We are on tantrum number 8 for the day and yes it could be molars, or ears but really it's just her personality and I thought by 2 it'd be better but nope she still never sleeps at the appropriate times, still feels hellbent to only let me hold her when she wants, still gets bent out of shap if you look at her funny but I too try to just hold onto her sweet personality that's hiding deep down inside her like a special pearl that's still in the works. She's beautifully and wonderfully made and yet I still hide in the bathroom, or take extra long showers when hubby is home, I take an extra lap around the campus when he's watching her because if I don't I won't be able to handle the unending neediness!! And that's okay!!
#14 Anna (bbcaggi) on 2014-08-20 18:24
It took me three years to get pregnant with my first one. I felt the same way after she was born. And I had such guilt because I felt that way. I had a huge cry about it one night with my husband. We decided I wasn't crazy, I wasn't depressed and most importantly I was normal. The words you have written Re the much more eloquent version of what I tell pregnant friends. No one told me I might feel that way and I wish they had. It would have saved me from a night of ugly crying. Now... I am pregnant with twins. I am scared of the newborn period. Shew..
#15 Chrissy on 2014-08-20 21:02
Hi Ali,
I don't know what made me come looking for you tonight. Something about 5 Minute Friday triggered in my memory and I wondered how you were doing. (I'm glad your blog is so easily searchable by "mercy ships ali"!) Obviously it's been well over a year since I stopped by here as I didn't know anything about Ethan.
What a precious boy! I will have to come back tomorrow when I'm not so tired (hello midnight!) and read more of the story.
But thank you for sharing. We are so all in it together and the more we share the less alone we feel. Prayers for you tonight.
#16 Krista (Homepage) on 2014-10-03 03:47
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