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.
