"There is no point in wishing things can be different. We can't change the past. We can only accept the change and move forward."
Last night I felt like I had my normal life back for a brief moment. We decided to go to a friend's farm gathering. Since it was outside, we felt like it would be a safe place to take Arlie and get some fresh air. I took in all the moments. Kids running around, painting pumpkins, and little giggles. With a view of rolling hills and the sunset, with music faint in the background. I felt so many emotions. Arlie was loving every minute of it. I dreaded leaving though. I knew we would be going right back to our new life. The one where I worry about germs and fever. The one where I constantly think about her next clinic day.
Clinic days are our new normal.
Walking in the hospital every week brings so much anxiety. After living there for a month, It's the last place I want to be. We pray for lots of patience and understanding going into each clinic day. I've realized through this process, I'm not in control of everything. That's hard when it comes to my baby. Mamas, you know what I'm talking about. We know what's best for our babies and if anyone tells us differently....the bear comes out in us, wanting to protect them so much.
We start each clinic by getting Arlie's vitals. Making sure she is maintaining a good weight while going through chemo. This is the easy part.
We then proceed to the room where all the children get their ports accessed. The nurses and staff try their best to make us feel comfortable, but there's nothing comfortable about holding a toddler down to get a needle stuck in their chest. Every.Single.Week. I never would've imagined this being our life. Arlie has adjusted so well though. Better than me most days.
They draw blood and we wait for her labs. They want her Anc-Immune System to be a certain number to proceed with treatment. If it isn't, then we wait a week. Hoping her body gets a little stronger. Although, I want that number to be good, it's sometimes nice getting a week off. We all need a little break every now and then, right?
There are blessings through this process. Like the amazing parents we have met, going through the same thing and can fully relate with us. We are a team and support for each other. We understand each others struggles without having to say a thing. And we are one heck of a team if you ask me!
The real part of the process begins. The part where they give my child drugs, that are essentially a poison, but have my child in remission. That part is HARD for me. I can't fully wrap my head around it. I worry about the long term side effects of these drugs. Will her organs be ok after all of this? Will she be able to have babies one day? There are so many unknowns to all of this. Its crippling sometimes. We are slowly finding our way though. Very slowly.
At this point we have been in clinic for 6+ hrs. Can you imagine sitting with your child at a doctors office for hrs, every week? It's TOUGH. But somehow we are doing it. Arlie is doing and making it look easy for us adults. Children are going through this, every single day, for years. I'm mind blown some days that they to go through this!
Clinic is tough. This is real life. It's hard to watch what these children go through this and it's even harder to hear and accept that some of these children won't make. This process is life changing and puts so many things in perspective for us.
"It's pain that changes our lives."