It’s been almost three months since baby girl warrior was born. We’ve been home for two. Since we walked through our doors we have been trying to find our new normal. This isn’t unusual for new parents. Adding another child to your home means a lot of changes and trying to get everyone on board with them can be a challenge. The first few weeks we were purely in survival mode. Our miracle baby was born blue and somehow after fighting for her life for weeks, they were just sending us home with her?! Like, shouldn’t there be a background check or something? Shouldn’t there be a home inspection? It was scary. Since the day she was born we had nurses and doctors a button push away to help us address any issues, we had three monitors tracking her every breath and oxygen levels, we had back-up….and now…we didn’t.
Aside from just the fear of her chest stopping movement we had a lot to do. We had another little girl who missed us terribly while we were mostly bedside in the NICU. She needed a lot of reminding that her world hadn’t stopped, that she was still just as important to us. My husband had to return to work immediately because of all the time he had used up in the NICU, his company needed him to put in some crazy time. So there I was, after most of the visits ended, the phone calls and texts subsided, the house finally having all of the people it should inside….and I was terrified.
Before I even had time to think about that though, the adrenaline kicked in, the “mom” kicked in, the get up and dust off, the do it because it needs to be done, the sleep when you’re dead, cry in the shower, live off a granola bar and leftover mac and cheese, find the shirt without spit up on it to go pick up tonight’s dinner kicked in. We’ve all been there. Trauma or not. We’ve all been in situations like these. So the days went forward.
Call the doctor, schedule the appointment for neurology. Schedule the early intervention meeting. Clean the house for early intervention meeting. Call the pediatrician. Get more phenobarbital. Yes, I know it’s a controlled substance, I just need the script transferred so I don’t have to pick it up in Buffalo. Call the pharmacy. Check on Ricklan. Put on another show. Check on the baby. Change her position. Talk to her. Make sure she is stimulated. Go to the pediatrician because they want to weigh her before they write a new script. Pack the car. Don’t forget the right juice cup. Feed the baby. It’s a good feeding, no choking. Pump. Get Ricklan some lunch. Spend some time talking to her. Hold the baby. Clean up the toys. Load the lunch dishes into the dishwasher. Answer a call from the insurance company. Feed the baby. Pump. Ask Ricklan if she wants an adventure that day. Attempt to take her anywhere…the park, darien lake, the backyard most the time…and begin the exit process again. Change of clothes, bottle, juice cup, diapers, pumped milk, snacks, bathing suits…has the baby spent too much time in the car seat today??? Do adventure. Sweat my butt off. Come home. Drop everything, everywhere. Feed the baby. Bad feeding, lots of coking, lot of time, console the baby, cry a little. Pump. Give Ricklan a bath. Answer some texts while nursing the baby on the toilet and watching Ricklan in the tub. Thank everyone for thinking of us. Text the early intervention people the update from the pediatrician. Confirm you have made the appointment with neurology. They suggest you make an appointment with the ENT as well (again….that’s in Buffalo). Write it on the white board so you don’t forget. Check on Ricklan in the tub. See the white board says you also have two birthday parties and a shower coming up. Start scrolling amazon. Ricklan is finished. Brush her hair (oye that battle). Put on a show. Give the baby a bath. Pajamas for everyone. Did anyone eat dinner? Let Ricklan have three popsicles and a handful of goldfish while watching her show. Feed the baby. Pump. Read Ricklan a story. Tuck her in. Put the baby to bed. Pump again. Why is Ricklan up? Find her lost wubbie. Check on the baby. Remember you never finished scrolling amazon. Open your phone and instead google ways to make more milk so I don’t run out of food for my baby and read facebook mindlessly until it’s time to pass out. Get up and do it again the next day.
Different appointments, different phone calls, different adventures with Ricklan….but pretty much all the same.
Now of course not every day was like this. And I don’t want to sound like I’m complaining. I just feel like it’s so hard for people on the outside to understand sometimes. They think “you’re not working, how do you not have free time?”….or my favorite “are you all relaxed and ready to get back to work?”…..
So the days passed and some days were amazing. Some days I almost forgot what we went through. Some days I handled the crap out of our lives and got Ricklan to soccer on time, wore the baby who enjoyed the sunshine, made a nice dinner, mowed the lawn, caught up on laundry or organized the garage. Some days we did big adventures and I felt like I was getting the hang of it all. But the funny thing about being in “get it done” mode…is that “reality” hits you when you don’t expect it to, and don’t want it to. Once when we were at Darien Lake I was watching Ricklan from about 50 feet away on a pool chair. She is finally is able to master the rope to climb up the slide this year meaning I don’t need to stand out there with her. I started feeding the baby and enjoying the sun and started thinking “I’ve got this”. Then…like a tidal wave from the pool…Ricklan fell and wanted me to come pick her up, the lady next to me asked if she could borrow one of our chairs and the baby started choking and coughing and couldn’t catch her breath. I wanted to be swallowed up. I wanted a bubble to come over me, the baby, Ricklan….all the noise of the water park just faded away…all I could hear was my baby choking and my other baby crying.
We fixed it. We got through it. The baby caught her breath and I scooped up Ricklan and reminded her what a big girl she is. We wrapped ourselves in a towel and took a minute. We came home, tired, sweaty, hungry and just….finished. I stayed home for a couple of days. Convinced I couldn’t go back out there again. But that is not the summer Ricklan deserves…and fresh air and adventure is what the baby should experience…so eventually….we try again.
I guess this is all just part of it. Part of the grieving process, part of the learning process, part of the adjustment. The days can’t always be good…but they also don’t always have to be bad. I’ve said before that the devil is a thief a joy and I believe that with my whole heart. He was there that day in the water park, taking away my sunshine and confidence, waiting for me to give up. But I won’t.
He showed up again recently. The reason I opened my computer so late tonight, giving up my quiet time to write all of these feelings out. He tried again. This time he came at me hard. And he came at me at one of the most precious times of the year for me.
I am a Christmas person through and through…I put my tree up the day after Halloween and blare Christmas tunes from around October on. The magic, the tradition, the family time, the decorations…they all mean everything to me. The only other time of year I get this excited is the fourth of July. On Silver Lake, on July 3rd, there is the ring of fire. A tradition in my family that has been going on for years. Often my sister drives from states away to make sure we all bask in that red glow of the flares together. It’s magical. Year after year, seeing people come together, the delicious food (come on pasta salad), the cousins all growing up together and playing together, pitching tents because we literally make my parents cottage burst at the seems. It’s all so special. I live for that night. We buy matching shirts and glow sticks, we laugh and watch the kids play, we smell the lake and get ready for the amazing fire works. We all wait for that magical sound of the sheriff’s boat coming down the lake, telling everyone that it’s time to light the flares. In minutes the world glows red. For 30 minutes I feel like magic. The kids run around in awe year after year, we take pictures that finally aren’t “missing someone”, and we watch the beauty of the lake and remember all who have died so we can celebrate.
This year the countdown began…the sheriff came down…my phone was out recording as always…the kids yelling “happy fourth of july!!!”….and then it came. He came. He came so hard and fast for me that I’m crying while I type here because the fear was so very real and all consuming.
The baby was asleep inside already. She had been perfectly tucked in and with a fan in her room couldn’t hear if the fireworks were set off outside her window. She was good. It was Ricklan all of the sudden that caught my breath. Running around in the dark, so close to the water. There were so many kids. My family is big and I adore that about us….but all of the sudden it was too much. I was going to lose her. She was going to fall in the water. One of the other babies would fall in the water. Someone would come and take them in the dark. Something terrible was going to happen. It had to. Because that’s what happens to us now, terrible things. We could lose our babies at any minute. If we aren’t careful they will be gone. It was too much happy. Too care-free. Something HAD to happen.
Everyone is fine.
There is a small gate blocking the lake.
All 12 are here.
13 is inside.
Finally my bff put glow sticks on Ricklan’s wrists and ankles. She already had about ten around her neck. We made a joke and I started to see. The devil was there. He came to take my joy. My second favorite moment of the year. The one I didn’t even know 8 weeks ago if I would be out of the hospital to celebrate. Before the flares died down I was back. Refusing to let the moment be ruined. Refusing to let my daughter think for one second this night wasn’t as magical as she already believed it was.
I took the designated cousin picture and the “family of five” picture I love to take because it’s so rare we are all together (my sisters and my parents). I remembered that God is bigger than my fear. I remembered my sister telling me to picture handing my daughters over to Him, letting Him take care of them so I don’t always have to. I remembered that I was a daughter of the King Himself, and that Him, and Him alone is the one who helped my daughter get out of that NICU and it’s Him and Him alone that will continue to guide us through what comes next.
I saw something on the internet later in the week that seemed like it was made for me. A quote. “When you are hanging by a thread…make sure it is the hem of His garment.”
So as I continue to navigate this new life, these TWO babies that I have, these appointments that have to be made and gone to, this house, my husband that can’t be forgotten, work that will be starting again soon….I will remember…the devil does not get my joy. I will revel in it. Bask in it. Every day is a gift. A gift given to me by Him. And even on the crazy ones, there is still joy. A joke said in the bathtub, a smile from the baby, a silly dance Ricklan made just for me….there is so much joy. And every time that I get overwhelmed and start to think I’m not going to make it, or start to believe that the fear is too real….I’ll just remember to grab hold…to the bottom of His garment…the same place others grabbed when they were in much worse situations…and He always reached down….and healed them.
So if you’re at the end of your rope…I encourage you to do the same. Let’s learn together. And let’s feel our joy. And hang on…with everything you’ve got…until He can reach down and give you your miracle.