Happy Easter readers!
It was not my intent to take a week off writing. Certainly, I knew celebrating Easter with out-of-town family would delay posting, however, I didn’t expect to spend time at the hospital with Fulton, and as such I’ve been preoccupied. Thankfully, he’s doing well, but you’ll have to tolerate seven takes all about him and the joys of hospital stays. (And if you skip to the bottom to link up without tolerating my takes then you’re heartless.)
1. So much of hospital visits is sitting around and waiting, followed by flurries of everyone needing to do everything at the same, freaking, time. The ER was crowded so we waited to be seen, and consequently, the pulmonary floor was crowded so we waited for a room. Everything is done on a schedule; doctor rounds in the a.m., breathing treatments every four hours, supplemental water and formula in between. And it always seems like a new doctor, nurse, therapist or student needs to stop in to chat at those exact times. The remainder of the time we sit and time passes: life goes on as usual outside these walls, but inside Fulton’s room it’s like limbo. (And I hash out a blog post.)
2. Specifically, Fulton has a chest cold, the same everyone in our family had. On Monday, after I was convinced he was doing so much better, his fever spiked, his oxygen levels dropped and his heart rate went up, plus he looked exhausted. You could tell his body was wiped out from fighting this bug. We did everything we could do at home, but the big fear was pneumonia which we would need a chest x-ray to rule out. We brought him to Children’s Hospital of Philadelphia (CHOP) to get him checked out and while he does not have pneumonia, they’ve been able to do a bit more for him here which will hopefully speed up his recovery.
3. Fulton hasn’t been hospitalized due to respiratory distress in years. Given that he has SMA, most of the doctors and nurses were amazed, and assumed he’d been hospitalized elsewhere since his 2011 admission here. I don’t know what I can credit his healthiness to, except maybe THIS GUY! BOOYAH!
4. This post will go live at midnight, and chances are my husband will be here at the hospital trying to sleep on the sofa “bed” they provide. When Fulton was hospitalized for this g-tube surgery, he shared a room and instead of a bed, I got to use a fold out chair “bed” which was like a big, hard, plastic LaZboy. Yes, sleeping in a hospital bed is hard enough for patients, but the guest accommodations are often their own type of hell. It’s a great way to pretend to be a Cistercian. (The hospital does serve good coffee, praise the Lord.)
5. The one thing (on top of outstanding medical care) that CHOP has going for it is it’s cafeteria (thought the Johns Hopkins cafeteria/food court doesn’t disappoint either [good grief, the things I’m an expect in now…]). FRESH SUSHI! MTO OMELETTES! Other yummy food that doesn’t remind you of a Chris Farley / Adam Sandler SNL skit! I’ve already forgotten how poorly I slept!
6. I can write about sushi and hospital sofa “beds” because Fulton is doing really well. Hopefully, today/Friday he will come home. I know there are other special needs moms out there who are fearing for their childs’ lives right this minute. Many are here at CHOP with me. If you can spare a prayer for Fulton, please also remember the other children in this hospital who will not being going home today, and their parents as well. (UPDATE: Looks like a Saturday discharge is more likely.)
7. Lastly, love hurts, and not in just the “he dumped me and I’m going to cry about it for a week” type of way. So often, I see love depicted as only gushy romantic or sexual love. It seems perfectly acceptable in modern society, and it is often glamorized, to do something foolish for love, but rarely ever is the hard work of loving mentioned. Even in many churches, love is depicted by Jesus holding the children on his lap or carrying a lamb (or maybe this guy.) But love is late nights, worry, panic and exhaustion. It’s feeling crushed and defeated when all you’ve given isn’t enough. Love is sacrifice. True love can’t be selfish. It’s giving no less than everything, just as Christ did for us on the cross.
Sitting beside is one reward of completely loving my child. When we are able to view our trials as the result of love, and therefore inherently good, rather than senseless suffering, we’ve moved closer to what Christ suffered greatly, both physically and mentally, as he bore the sins of mankind on the cross. He did that for love of me, so I’m pretty sure I can handle that hospital sofa “bed” for love of Fulton, though admittedly enduring trials patiently is a constant struggle due to our sinful nature. Suffering under the weight of love, when done right gives us hope and makes us stronger. I think love is why I can continually bear up under the weight of SMA and not be crushed by it.
Okay, enough from me. Link up your takes below and remember to link back to this post so your readers can find all the Quick Takes. I look forward to copious amounts of Easter pictures! Please don’t disappoint me!
Praying for Fulton and the other kids there.
What you said about love is beautiful, Kelly. Happy Easter to you and your family!
My goodness, you certainly have had plenty of opportunities to show lots of love (and patience and courage and faith and strength!) Gosh, your post put all my petty “problems” in perspective. I just can’t imagine what you must go through daily and during these scary, difficult times. I love visiting your posts because you always find the silver lining in your trials. I need to do that more! I love your reflections on #7, I can take all of what you said to heart even more! So glad Fulton has had great care and you are loving the food! Great SNL skit, by the way! 🙂 Fulton is so blessed to have such a great mother (and family) who knows what sacrificial love is again and again and everyday! I will keep Fulton and all his friends in prayer and pray your family can be one again at home! Tracy @ http://www.asliceofsmithlife.com
Oh and PS: Happy Easter! 🙂
Prayers for Fulton that he gets to come home on Friday. Loved your reflection on love. A great reminder for all the little and big things we do for our families. And sorry, no Easter pictures in my post. We’re slackers over here.
Praying for Fulton (and his family). Thanks for sharing with us.
Praying for Fulton and those other kids who aren’t lucky enough to have you as a mom.
Okay, now, look. You have demonstrated that you have a sense of humor. I’m going to call you on it. If you think this is tasteless, feel free to delete the comment. Really.
But seriously. Doesn’t that #1 pic make Fulton look like Hannibal Lecter? I did a double-take, thinking, “What the heck? They’re restraining the kid so that he doesn’t bite somebody’s tongue out? Have they heard him talking about fava beans and a nice chianti or something?”
All kidding aside, that last picture is about the most beautiful expression of maternal love that I have ever seen. God bless both of you. And the rest of the family, too, of course.
So incredibly much empathy here. I haven’t ended up in the ER down here with Daniel (praise God!) but we were frequent fliers at UCD Medical Center’s pediatric ER for respiratory things and febrile seizures. It’s kind of scary when you walk into the ER and the nurses/residents/doctors compliment you on your new hair cut since the last time your kiddo was in there. I think something also got put in Daniel’s file there that said something like, “if his mom brings him in, admit him NOW!”
I’m also probably one of the few people who can get a good night’s sleep on the hospital beds — my issue is getting kicked out of the room for an x-ray every morning. 4 years ago, one of the radiology techs finally had mercy on me and handed me a lead blanket so I could just go back to sleep.
I think you and Mary Lenaburg are the only people who totally “get” my lifestyle.
I’m sorry to hear of the trials you have to go through. No one I know closely has had SMA, but I’ve heard many stories about similar conditions. I will pray for Fulton and adore your positive attitude and focus on love rather than sorrow.
I was at the hospital for a breathing treatment with the baby but nothing like what you are going through. Prayers for a quick departure from the hospital!
Beautiful reflection. I have a love hate relationship with hospitals (as I find myself in one right now unexpectedly albeit for a more mundane and stupid reason). I do confess a tiny twinge of jealousy that you are at some of the best hospitals — chop with a 22q clinic, sigh, FL you suck sometimes (also and the food you have there–what??? Ridiculous).
Back to what I said–mundane and stupid–writing from preop waiting for our doc to get here to extract a popcorn kernel from my 4 yr olds ear. So not the same thing as what you’ve been through this week.
But I can relate to trying to not feel crushed by the weight of a genetic syndrome and not knowing what the future might hold for your kiddo. Sending lots of love your way. And prayers for everybody today. Thank goodness for the gift of offering up suffering and making it worthy and meaningful.
And I have had 2 hours of sleep so I don’t know if any of this makes any sense whatsoever sorry. But def prayers girlie. Thank you for the beautiful words this morning. I needed to hear them if not for this particular mornings procedure but for a culmination of all the past ones and future ones, and trying days to come too. I feel like even though we have our own individual struggles that we’re in this together, suffering together, moms and special kids and everyone together.
You really amaze me with your fortitude. I am sure it’s not easy. ??
We are keeping Fulton in our prayers!
Fulton has been in my prayers since I saw your IG pic. Glad he’s going home. And love your #7 reflection. How true that love hurts like that.
I’m so sorry Fulton was sick…so glad he is going better now and will likely be coming home today! Prayers.
I loved your beautiful reflection on love at the end. So true…about all the hard work and sacrifice involved in loving.
You made me cry, but in the best ways. Love is sacrifice. It’s trying to sleep in those horrid chairs or on a mattress from 1941. It’s missing your other kids so you can care for the one in the most need. It’s a fever that breaks at 3 a.m., a smile after a breathing treatment and tolerating the Docs less than pleasant bedside manner. YOU are a wonderful mother with a spectacular family that is doing the work that God gave you to do here on this earth. SO LOVE my friend with all you have. It’s what you do best!!
#7 – YES!
Continued prayers for Fulton and your family as well as all the other littles in the hospital today.
Praying for Fulton and your family!!
We’ve had our share of CHOP stays (pulmonary and GI wards) over the years, with my kids’ medical issues, and I agree–it is a really great place to be when your kids are sick, but oh man, those sleeping couches are the.worst. At our last stay in December, our room faced the ER waiting room (several floors up) and it was like listening to a rave party all night long.
So glad Fulton is getting good care, and that you are able to stay with him–the kids whose parents couldn’t be with them all day just broke my heart.
#7 is beautiful and true. Thank you for sharing your perspective.
Just wanted to say how I love your blog so much because it’s the perfect combination of hilariousness (is that word? maybe not) and deeply introspective thoughts. I just said a prayer for y’all and the other families at CHOP.
Now I feel guilty posting about makeup after reading your post. Praying for Fulton and all the other kids.
Many prayers for Fulton and your family.
Goodness, it’s a rough couple of days. I hope you are home, or are almost home, and Fulton is well.
That take #7, Kelly, gosh that was beautiful.
Prayers for you, and Fulton!
Fulton is blessed to have you as his mom to love him through this! Thank you for giving us a look at this other, less glamorous, side of love. Adding your family to my weekly prayer intentions!
Remembering you and Fulton in my prayers. I always say love is a choice not a feeling. You have certainly been making the tough choices.
Wow you Got profound there in #7. That’s such a great reminder. Praying!
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