We recently took a short trip to North Carolina. It is a bi-yearly trip. Anna does not always travel well. This took me a few weeks to write about this day. It is important to write about. It is ugly. It is difficult. It is the truth.
On our last day there Anna was not right. She was not smiling, not sleeping, not of a lot of things. I heard her make sounds and wasn’t sure if it was sleep talking or maybe something else. It was like she was moaning or something. Paul came and took her in his bedroom and I passed out from worry and listening to her. It was midnight.
I woke at 6 to give her the meds she gets everyday at 6am. I went into his room and I saw her laying there, not asleep, but not crying. I pulled her little legs gently to get her to the end of the bed, and lifted and put her in her wheelchair. I squeezed out of the room.
I did the morning routine, but she was not having it. I knew Paul needed a little more sleep because we had a 5 hour (at least) drive before stopping. Anna got worked up and she did not really stop. I gave her Tylenol then I proceeded to walk Anna around Mary’s living room for 45 minutes until I had to wake up Paul. Mary took a turn pushing her around the sectional couch to try to calm her. Mary’s staff for her daughter asked if Anna liked to meet new people and I politely managed to say that she was so far gone that nothing like that would help right now. It was a sweet idea on her part. We HAD TO GET ON THE ROAD. I could not take her outside alone as Mary has 7 cement steps and we need two people to take her. Mary had just had her back go out so we needed to be safe. We had to wait for Paul to wake up. Stress.
Paul woke up and we quickly left. We drove and Anna was given Tylenol again. I kept wondering what was going on with her. Was she so out of routine she was like a delirious toddler? The last 24 hours she was really spiraling. She seemed to calm down at first. At this point I’m thinking UTI. I am coming up with this from the crying, the lack of emptying and her out of routine in general. She had not been crying but she was eerily quiet. Very quiet and it startled me. What could we do but drive?
We head where the GPS took us. In the beautiful mountains of West Virginia. We are awed by the scenery. Then it starts. Anna is crying, then she is really crying. Then she starts to sob and her little chin is quivering. I mean quivering, it is heartbreaking. I am lost with what to do. Stopping won’t help, her diaper is fine. She is a total mess. You can cut the air in the minivan with a knife. Paul and I drive in silence. There’s nothing we can do. If we stop it prolongs the time we are trying to get to the hotel to let her sleep more. We start arguing, Paul wants me to give her more Tylenol, I can’t I tell him, it’s too soon. I’m trying to look at the beauty of the mountains in the midst of extreme stress. I’m praying to God to let us make it to the hotel without having to stop and call 911. I mean this was bad, really bad. I’m trapped with Paul with a child that is just good, and possibly in need of medical attention. The reality of it is that if I do take her in the ER in North Carolina it will do two things. It will put Anna in the hospital for days, if not weeks and Paul and I will be stuck in another state. Trust me, I’m not denying or limiting care, I just think it’s a UTI and out of routine, we can’t do much in the ER for that except be admitted, and then Anna will REALLY be upset. So I made a plan in my head, if she is still continuing when we reach the hotel, we will ask where the nearest hospital is. I hope to God and I mean straight to a conversation with Him that I do not have to go this route.
Finally, we stop at McDonalds so I can stop the feeding pump. I have an idea to give her Pedialyte. This can sometimes reverse her dehydration if it is a UTI. I ask Paul what he thinks, he just replies TRY ANYTHING. We are both at our wits end. I give it to her. Twenty more minutes of crying and then nothing. No sounds, no crying, she is quiet. SHE IS QUIET. It helped. I am praying again, now a thank you prayer.
We get to the hotel. I get Anna all changed, in pajamas, set up her last feed, tuck her in the big queen bed with pillows surrounding her. I give her more Tylenol. I see her at peace. This is beyond words since the day we’ve been through. She falls asleep quickly. She sleeps through the night. Anna and us are at peace, I think her own bed, her rest, her day has been reset.
These are the days of the Warrior that really force the life out of us. The days when you feel like nobody gets it, you feel isolated from the world. You watch other cars drive around the mountains and know they are likely not dealing with your deck of cards. It is hard. It is grueling and it is maddening mostly to not be able to help her. Wondering what is wrong. . . with the nonstop crying. But it does always end, not in the time you want, or often in the way you want. Life gives us different, very different scenarios. Keep doing the next thing, keep driving, praying and hoping.
When we got home, Anna’s urine was tested. She had a raging UTI. We got her antibiotics and she is fully better. We realized when traveling Anna will have to be in her own room, on a tight schedule and cannot easily stay with others anymore. But, we can work around this. We will make her needs met. The mountains are still beautiful, the ones in West Virginia and the ones in our daily lives.
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So many things I want to tell you but my mind is spinning! First, you are an amazing mom with unimaginable circumstances! I want to hug you and tell you that you’re right/ no one else can imagine how this feels! You are always going to second guess yourself with going to er but you trusted that you know your beautiful-fragile-nonverbal child! You suspected uti and you were right. Hospital would definitely admit her and run tons of tests and you would have been stuck there but you knew that this would be so hard for her. You do get her best medical care always but you always have to trust that you know best what she needs. That’s so easy to say and with totally different circumstances I’ve made the right decision to NOT go to er or NOT give more medication before getting my voice heard by doctors and then having them agree it was good choice. Please know I’m with you in spirit- praying for you always- and wishing when you are going through these things you feel beautiful, holy Mother Mary wrapping her loving arms around you to get through it. Thank you for finding courage to write this… it means more than you realize to others.