Saturday April 23rd we brought our son home for the first time. We didn't make it hugely public, didn't tell a lot of people. I was afraid it would change and I would be devastated. I was afraid that being too excited would ruin it.
It took forever on Saturday for them to discharge us. We had to wait for equipment and go over EVERYTHING that we had learned. We had to tell them what medicines Dean was on (Asprin, Prevacid, Lasix, Aldactone, Methadone, Flecanide) and what each one was for (blood thinner, acid reflux, get rid of fluid, get rid of fluid but not potassium, combat the wean off of the sedatives and paralytics, and his irregular heart rhythms). We had to know when to give them (6 AM, 2 PM, 6 PM, 10 PM) and how much of each. We had to to go over CPR again, who to call for what, when his next appointments were, and prove we knew how to use his feeding pump.
I understand why we had to do these things. I'm glad that they look out for my kid, but by the end of the day I wanted out of there so badly I couldn't sit still.
The time came. My son took his first car ride home with his Daddy and his Grandfather, three Dean's in a car together, me following, crying on and off. Overwhelmed and over joyed and nervous as hell.
We got back...there was so much to unpack so much to organize (I still don't feel organized)(And won't for a long time). Uncle John and Aunt Katharine came and held their godson, and they brought Ellie.
She met her brother.
Guys, she met her brother.
They exist in the same space. Ellie loves him. She gives him his paci, she cries when he does, she wants to sit next to him, be near him. She's going to stomp him one day. Push him so hard in his swing that he tumbles out. Poor little guy...he's survived heart surgery now he has to survive his sister...
I had this moment on Sunday where I just took a deep breathe and thought "We are home."
And then I stepped back and thought "Crap. We're home."
My mind shifted into "whatdoIdowhatdoIdowhatdoIdo?!"
We went from constant monitoring to mediate monitoring. We went from bells and whistles and nurses to home and quiet and Ellie. We went from being away to being home. From big spaces to our tiny little house.
Would Ellie sleep through him crying? Would I be able to keeping up pumping? Would Blair be ok with the stress of it all? Would I be able to handle both kids by myself? What do I do if he de-sats? Would I be able to tell if he de-sated? What if I missed a medication? What if I can't ever do the dishes or the laundry? What if Ellie makes me crazy and I yell at her too much? What if I break him? We just spent all this time working to keep him alive, what if I'm the mom who doesn't do it right and I break him? What if I don't do his feeds right?
It all boiled down to one thing: I am not an adequate Mother. I am not enough.
Lies.
Slowly but surely we are getting there. Slowly but surely I'm learning where I need to ask for help and when I can back off. Slowly but surely Ellie is learning how she can help, what's hers and what's Deedo's. Slowly but surely Blair is adjusting to waking up a lot at night.
I keep harping on this, but it needs to be very clear, we aren't done. We still have two more surgeries. I still feed Dean through a tube in his stomach. I still have to watch his breathing and his color (too pale or blue is bad). I still have to be cautious of those who are sick. I've asked people to wash their hands and I'm not ashamed of it. The time between the Norwood (the surgery he had at three days) and the Glenn (the surgery he will have sometime this summer) is critical. We monitor weight gain and blood saturation levels and watch his breathing. We live, but we live with caution.
We are home. But we are home with caution.
It has been amazing to see the community in which we live come out to help us. We have never had so much cereal in our lives. Or raisins. Or oatmeal. So many people have sent me offers of dinner and encouragement. Reminders that I am doing a good job, that I am enough, to give myself grace. People who offered to take Ellie for a night. Or an afternoon. Offers of time and love.
I am still figuring out where to ask for help and where to struggle. See, we are a family. And eventually, one day, we will be have to be us, without help. I am working on finding a balance of asking for help where I need, and realizing that these are my children and we are going to have to figure things out as a family. There is a fine line.
Don't get me wrong, Blair leaves for two weeks next month and the thought of this makes my heart beat a little faster and my fingers stop working so well. Scared comes to mind. Terrified might be a better word. (That might be a time I ask for a lot of help) (like...a lot).
Yes. This has been a lot. Some days it feels like too much. Like the weight of this might bury me and I won't know who I am or what in the world I'm doing or that my kids will somehow just break. All the sudden, they seem so fragile. Maybe that's why I fight so hard not to treat them like that.
It has been hard to just accept that where we are in life we need help. That yes, other families go from one kid to two, but their second doesn't always require quite so much attention. It's hard to accept, still, that Dean is different that his sister. Than other babies. I do let him cry, but I can hear it in his voice when he's hurting and that cry...I can't describe to you how it chills my bones.
I look at him and Ellie...my babies...they are still here with me and that's...that's so big. In the past two days there have been times when Ellie AND Dean need me and I can't get to them, and there are dishes to be done and a house to be organized and put back together and clothes to be washed and beds to be made and errands to be run...and I step back. And go to my kids.
And that's enough.
I am enough, in Christ, for them.
I know, when push comes to shove, if there are days when I'm falling asleep on my feet, when I am overwhelmed and scared, when it's all too much, that there are any number of people I can call who will step into my life and speak life and live love.
One day at a time. Slow slow slow. And lots of coffee.
I think we'll survive.
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