Seeing the Miraculous

I'm always worried what's in my head won't translate well to writing. But I also really want to write a lot right now. Recording what's happening to our family is the best way I know how to process this and to sort through some of the harder days. Harder weeks? Probably weeks. 

Maybe just last week. Probably just last week...

I wish I could proclaim that my Faith never wavers, that I'm always on, that I can stay positive. That the long days of the hospital and the long drives home and back don't bother me. I wish I could tell you I don't get jealous of other peoples lives and the way everyone else seems to be moving forward while I feel absolutely stuck in limbo. 

But all of that would be a lie. 

I was so angry last week. I was sad and frustrated and exhausted and grouchy. Dean got way more tech time than normal because I wanted to escape through reading and I wanted to tune out the world. And the problem with that is I can only do it briefly before the next doctor/nurse/tech/social worker/child life/ nurse manager walks into his room...

The hospital feels both extremely busy and extremely slow. 
What a weird place to live your life...

Having one child in the hospital and three at home feels like slowly being worn down, like a dull knife. I'm not sharp, I cut nothing, I'm barely functioning. Dean gets 75% of me because he needs me, my girls get the other 20% and 5% of me is lost in LA LA Land...the brain cells don't cell very well. 

Which is why, typically, on a Saturday night, I turn into an absolute nut case and I stop being able to function. Which is great when I have three little girls who want snuggles and attentions and kisses. The panic attacks came back. Its the worst when I think about having to organize and pack up my things and the girls things...and have dishes to do...and gifts to pack for Dean...I didn't even attempt laundry this weekend (shout out to my Mother in Law who told me not to worry about it and bring it to her, do you know you're an angel?!). This Saturday I called in the troops, aka Crystal Hill Book Club, who cuddled, swept, did dishes, discussed books and made me laugh and stayed until I could breathe properly. Until the weight that was sitting on my chest lessens...and I can cuddle my girls. 

On my drive into DC today, after my friends husband had our van checked because the check engine light came on after Church (are we laughing? We should laugh right? I mean, if I don't laugh, I'll cry again, and I think I'm dried up) I was thinking...

Here's my miracle. 

I prayed for miracles when Dean was a baby. I begged God to heal his heart, to make this easier, to not give this to us. I begged Him to pass us up...and He didn't. Those first three years with Dean were so special and so brutal and so faith building. I was challenged in ways I never imagined. And then we had Ana and Daisy and Dean was so healthy and we have those beautiful seven years of peace and home and stability. 

And here we are, in a month and will be longer. Waiting for the next steps to make sure our boy is safe to come home. And stay home. 

And here is the miracle...

That I got out of bed and showered and looked nice for church. 
That my Pastor hugged me this Am and it felt like being hugged by my Daddy. 
That my friends drop their lives to support us, watch our girls, and be in our house with me. 
The miracle is that I walk back into the Hospital, down this hallway, into this room and that I smile at my son. 
The miracle is Dean dedicating his life to the Lord all of his own in the dark one night while we were here. 
The miracle is that I haven't walked away from a God who I full well believe could heal my son, and that I choose to believe that it's for our good and His Glory. 
The miracle is a Faith that shouts and sobs and cries and yells and still says, "Yes Lord, You are good."
The miracle is that my marriage is still strong despite seeing my husband like two hours tops a week right now. 
The miracle is the envelopes that keep getting slipped to me and the emails that say "For whatever you need."
The miracle is the many people who deeply love our kids and have sent things to them just for fun. The people who don't just see my son but our daughters who are always hurting. 

My faith isn't perfect, and I'm crawling in the mud right now, but I'm keeping my eyes fixed on Jesus and not the hard. I'm crying the whole time, mad about it, and boy does it look ugly...but I came back to the hospital, I'm here. 

I'm ready for the next week. 
And that's the miracle. 

Hello 2026-Let's Chat

 Fun fact: my blog still exists. Isn't that just precious? 

Time and life and mundane has kept things blissfully chill, or as chill as they can be with four kids who we're raising. I've written here or there but not at all like I did when Dean was a baby and we were dealing with a very heavy medical diagnosis. 

Well here we are again. In patient for almost four weeks and...it looks like it will be longer. March 26, days before my Grandmothers funeral, I was concerned enough about our son that I called Cardiology. They were concerned enough that they told me to take him into the hospital. We tried INOVA first and very quickly were told that we were going to go to DC Children's National. 

From there we have started dealing with a disease we knew very little about, Plastic Bronchitis. 

And I am still completely floored. 

My nervous system goes back and forth from being semi ok to stressed out to crying to we totally got this to why is he coughing again to my dude you're not sick enough not to do math. Have you ever had a child in the hospital? I pray you haven't. This time around is much different from when he was a baby and I struggle to know where I can talk about what he's going through while protecting his autonomy and his privacy. He's ten now. Dean is ten now. We haven't had an extended hospital stay in seven years and believe me, I know what a blessing that is. I truly do. Ten is old enough to remember. Ten is old enough to have opinions. Ten is old enough to have his own meltdowns because he realizes how this is very very much not our norm. 

I still want to write about all of this. I have been. I've been journaling and recording what I can when I can, and I've never been shy about sharing where we are. I want this to be about what I have seen however, my experiences as a mother, not so much about Dean. He gets to tell his stories when and if he is ever ready. 

We were not ready for this, and yet we were. This year alone Blair and I have has a lot of date nights where we really dived into some harder conversations Of course we talked about our son. What we went through and how its not over. Little did we know those dates and that conversation would be the glue that held us together during all of this...

Right now I spend the week days at the hospital with our son while Blair works and does his best to see our girls in the evening. We have friends who go to feed and pet the cat and who magically wave wands make sure my house stays clean and doesn't smell gross. On the weekends I drive back home and spend some time with our girls and, if I'm being honest, I cry. I cry a lot. I usually end up asking a friend to sit next to me to baby sit me because when I'm home trying to make choices feels impossible. Our girls are so out of sorts and want us to all be home together and this just gets longer and longer and longer...

Today we found out it will be longer yet. 

We want Dean home. We want him home safely. And we want a life at home. I don't want to be tethered to a nebulizer and as it stands that's what it would be. It's not good for him. Its not good for any of us. I want my kids, all of my kids, to really truly LIVE their lives. Including our son. We are seeking the best possible way to make that happen for him. Unfortunately that takes time. 

Time for doctors to confer with other experts. 
Time for us to be apart from one another. 
Time for Dean to be bored out of his skull in the hospital. 
Time for Blair and I to have virtually no time with one another. 
Time for his body to get the help it needs. 
Time for another heart cath lab. 
Time for another lymphatic procedure. 
Time to be still and heal. 
And one, time to go home. 

I am asking my ten year old son to do something that feels impossible. To trust us and wait. When all that little boy wants is his own bed and his sisters and his living room and the food he likes. 

I question myself nearly daily. I ask my friends, you trust me, right? You know I would come home if I could, right? You know we're doing our best to confer with the doctors, right? I want to be home, together so bad I now dream about it, when I can sleep...

Despite all of this, despite how "good" my son looks I know his body needs more help than I can give it at home. And I will continue to fight and advocate for him the best that I can. And I see the Goodness of God in all of this. 

In the waiting and the unknown, I see God's goodness. 
In the hospital rooms and hallways, I see God's goodness. 
In our Community and Church, I see and feel God's goodness. 
In the drive to and from the city, I see God's goodness. 

All the prayers, the gifts, the support, the generosity, the people who have gone out of their way to help us or our girls, my in-laws who have completely rearranged their lives to love on our girls, the money that gets slipped into my hands for gas or whatever else we need...I'm overwhelmed and humbled by it all. I'm shocked that we are here again...I'm amazed at our community. 

I'm trying to remember all of it. The people who clean my house so I can just let my system relax and be with my girls. The texts and videos from friends reminding us that life does, indeed, still happen in the out, the friends who show up anyway when I say I don't need them to. The way plans have been altered or changed because they want to include me...

Someone once told me, "It's just as humbling to realize how deeply you're actually loved" and I feel every single part of that sentence right now. Every time I start to think, "I should be able to handle such and such a thing" I'm reminded I am handling it...and that asking for help and support help me handle it. Like Aaron holding up Moses hands, I'm being propped up right now so I can be present for our son. Our bills are being paid, our girls are not just being taken care of, but enjoyed and loved and wanted. They aren't a burden, they're a blessing. You all have no idea how much that HELPS me during the week. To know people are being GENTLE with them while their lives are in absolute upheaval...that people see past the attitudes or whining to the little girls who miss their brother and Mama...

We are not done here. It could be one to three more weeks of being in patient here, maybe even more, plastic bronchitis is no joke, its hard to treat. I am still processing that information and working on the best way to help our son handle that information. I am deeply thankful Blair was here today to help me hear that information...and to process it. I'm thankful Blair got to take him down and do something fun because Dean needs to do that with his Daddy and I very much needed a moment of quiet. 

If nothing else, please know, our Faith is strong. I know it will carry us through this, just like it did seven or ten years ago. The same God who saw us through Deans first three surgeries will see us through this stay and this procedure and all Glory to Him honestly. 

We get to decide how we respond to this.
I am choosing to respond with turning to the Lord and not away from Him. 
I am encouraging my children to do the same...I am asking such big things from them right now...and I am in awe of the way they have risen up and are meeting this challenge head on...

I'm amazed by them, all of them, honestly, they make me brave. 

One day at a time. 

God is good. 
All the time. 
All the time. 
God is good. 

Kitchen Cleaning Thoughts

 It's been a very long time since I put my thoughts here. A lot has been happening and a lot will continue to happen because that's how life works, right? 

I was cleaning up the kitchen tonight and wiping down counters while bopping along to my music. I have two little girls who are waiting for snuggles and a happy boy who picked Mary Poppins to watch for our family movie time. The new to us $15 dishwasher is running, the dishes are all done, the living tidied. Its quiet. I have happy tired kiddos. Our bills are paid. We are loved. 

While puttering about in my kitchen tonight I was wiping down the kitchen island we have. And thinking about the amazing couple who gifted it to us. There are already scratched on the top where I have cut things when I shouldn't have. The handle at the end in missing as well, too many kids hung off it before it finally broke. We've made pasta at that island, served dinner to others, its seen a lot of pizza there as well. Every time I wipe it down, I think of our Tyler's. I smile. I pray over them. I thank the Lord for them. 

I put up some important tax papers I found today. I forgot I stashed them somewhere and I knew I needed to put them away or I would be mad I lost them later. I have a cool way to store important documents now, because my biggest brother said to me once, "It doesn't matter HOW you stay organized so long as it makes sense to you and Blair." He was right. We've gotten much better about that because of him. When I put things away now, I always think of him now. I did today. I smiled. I prayed over him and his family. I thank the Lord for them. 

There are drying flowers in my kitchen. I moved some down to my desk, and put some of the roses I got Blair for Valentines Day up to dry. I love seeing those bundles and remembering why they were given and when. The bundle from when we were all sick and friends brought soup and flowers. The flowers sent to my mom this December for her and my Dads anniversary. I dry my flowers because Blairs younger sister does. She has these bundles all over her room. When I see these bundles, I smile. I pray over her. I thank the Lord that I love my sister in law. 

I look around my kitchen and I see and feel the influence of so many lovely people. People who have shaped and changed me for the better. Wanting a stand mixer because of Chelsea, loading my dishwasher the way Carly does, the supplements I take because of Megan, the magnetic picture frames on my fridge from Michelle. The sign Danielle sent in the thick of Deans treatment, the utensil holder from Katharine, the magnets from Mimi, not to mention that post cards! So many wonderful post cards from so many wonderful people! There's so many people I could name. Each one so special to me. Each one making me stop and smile. Each thing reminding me to pray for these people I love so deeply. 

I love seeing it all. Tonight it made cleaning the kitchen feel like being with friends, hearing their conversation and laughter in our little house. Marveling at where we were and where we are now. How perfection has taken a backseat to life, how messy it can be, but how fulfilling and loving. 

We are made up of all the people we love. 

I don't think I will ever be over the community that has become family that I have worked so hard for. All the ways I have absorbed their influences, and how deeply I feel humbled by that kind of love.