I have a heavy heart tonight and I'm just in an overall funk. I miss Bella. I'm aching for Tripp. EB sucks.
Other than that, we're doing okay here. Jonah is doing well and recovered fully from his croup after four days or so. We try to do some food by mouth at lunch, and he's been doing okay with that. I can usually get him to eat two to four ounces by mouth, but often times, it's a struggle. He's napping a little longer during the day and sleeping well at night. The pump is still false alarming at night and waking us up, but Jonah is really trying to give us solid sleep.
I'm loving my book/Bible study and I'd talk more about it right now if it weren't for my aforementioned funk. It's hard to talk about how you're learning to love better and bow your life in worship when it's been one of those days when nothing's happened but everything pisses you off. It was one of those days where you open your bathroom cabinet and everything falls out and you say a cuss word and shove it all back in. You scream at all your disorganized crap just because you feel like it's better to take it out on your hair dryer cord and your box of tampons than your family. Although your husband might argue you should have yelled at your q-tips too... he probably thinks he got their share. I don't really know what I'm talking about. I'm just sad and frustrated. But tomorrow is a new day.
And Jonah is THE BEST. I'm serious, y'all. I could not be more in love with this kid. He is the light of my life.
You're smiling, aren't you? It's okay. It can't be helped.
22 comments:
Thanks for the pix of Jonah and bringing a smile to my face! I had just finished reading about Bella and crying my eyes out. We are so blessed for our little ones. I gotta go hug my little man now.
He looks so sweet with that letter in his mouth, haha.
He might be the cutest thing I have EVER seen! Oh, my... so, so adorable.
I totally meant number ;)
Yes I was smiling. ADORABLE pictures of your little man. So do you think the eating thing is because it hurts him to swallow? Just curious. Hope tomorrow brings a brighter, less cluttered, more enjoyable day. GOD bless!
Grinning from ear to ear! :)
I've been in a funk today too, I can't seem to get motivated, I was funkified yesterday too - I would just randomly burst into tears. I'm pretty proud of myself that the tears have only flowed once today.
My heart just hurts for her family, I just can't imagine how they are holding up, how they are just "getting through" the day. I wish there was something - anything that I could do or say.
Thank you so much for the pics of Jonah - they brought a HUGE smile to my face! That picture of him throwing the ball - that is sheer determination on that boys face - I love it!
please call me if you want to talk or vent...I'll be your q-tips if you need it!
love you!
You made me smile in this post a couple of times. I can totally relate to cussing at random items and feeling as though I should look around to see if anyone saw me taking out my anger. It makes me feel normal to know you do that too. Jonah is an absolute doll! I pray that tomorrow is a better day and your spirits are lifted
~Ashley
Thank you. I needed to see that beautiful boy. I hardly know you but I love you & that sweet sweet boy. My heart hurts for Bella's family & for Tripp & Courtney & Randy. I HATE EB. I only know about it what you have told. No one Especially a sweet baby should have to endure that pain. I understand how you feel frustrated. You have been on my mind Love & prayers are sem your way. Again. Thank you for this post and those sweet pictures. I needed that smile. Love you
What a beautiful boy! Praying that this funk would leave you soon! God bless!
Precious Precious boy. He looks like he's loving life these days!
Will pray for the funk to lift- and you are right, EB sucks.
As always, thank you for being so willing to share yourself (and that SWEET boy) with us!
Love from TX,
Laura
Seems to me lots of people are in a funk. We all have our own reasons but maybe it is the season of the funk. Hugs to you and Jonah! He is so stinking sweet!
You are still in our prayers!
God Bless you!
Jenny
Jonah sure does make you smile for sure! I am feeling a bit of your funk too. Funny enough...Hope LOVES to dig through my bathroom cabinet and I freaked out in my funk today and screamed at Howard because due to Hope's fascination with all of my things in the bathroom, my tampons have gone missing, my eyeliner is missing and I cannot find my chapstick. SERIOUSLY. That kid takes and hides EVERYTHING. Then I deepened my funk when I realized how shallow I was being and how grateful I really am just to have her and so then I got all down on myself for feeling frustrated with her...you know that feeling? UGH! Praying for your heart and for your amazing boy. Love and prayers from PA!
sorry you are in a funk...
i read about sweet bella and wow. what a heartbreaking yet inspiring journey. you parents of these sweet eb children are so strong and should be commended. sometimes i am so overwhelmed with life as a working mom and 2 small boys, but i'm sure i have no clue what you go through daily. with that being said, hang in there and remember this too shall pass.
SUPER cute pics of jonah btw, esp the last one ;)
southern love and prayers from alabama!
Patrice,
My heart hurts as well over Bella. I have been following and praying for her through her transplant. It continues to amaze me how we can love these kids, not being related, and never met them in person.
You are the one who pointed me to Samantha with her BMT and I have been following and praying for each EB child going through transplant in MN. Thank you for giving me the privilege to pray for each one.
Okay - BMT is tough on these precious children and their families. I cannot imagine what it is like for the medical team either - they must be torn apart when a little ones doesn't make it. I've been praying for the other EB families (this includes YOU!) as well as this hits all of you.
Ok, I check in on Jonah every day, but after I've checked the blogs of the BMT kids. It helps me to see his beautiful smiling face, sparkling eyes and fun spirit! He is an amazing little boy!
I've watch you as you have blossomed in your parenting of your precious little boy who has a whopping extraordinary need of tender loving care! keep up the good work and remember there are oodles of us out here praying for your baby Jonah!
Seriously? That is NOT a baby,that's a LITTLE BOY. An adorable little boy at that!
aww. I dont blame you at all-- that is the cutest little fella ever
Hi Patrice: Awesome pictures. I'm smiling. Thank you for that.
I think the whole EB community is in a funk right now. I miss Bella too. I ache for her family.
Praying for all the EB cuties out there. Love you guys. Give that precious son of yours a big hug and kiss for me. Love Leah's Nana
I am praying for you. I hope it helps. I want to do more. Let us out here in blog land know how we can help you. Anything at all? You are doing an amazing job. LORD, be near.
yup, smiling!!! :) how incredibly cute he is!!!
love those pics :)
I miss her, too.
I have followed your story for awhile and never commented, but just had to say, he is the cutiest thing ever!!! OMG just want to give him a big squeeze! Hugs to you, hope your "funk" passes for you soon.
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