Tag Archives: control

I Can Do Hard Things

When Beckett was diagnosed with Biliary Atresia we were put in touch with Andy, a mom of a little girl who also has BA. This woman has become a very, very dear friend and someone who I completely admire. Through all the crap that they are going through with their daughter she is always positive and willing to lift others up. The other day, I received a gift from her.┬áIt was a cute onesie for Beckett and also a necklace that says “I can do hard things.”

IMG_7012I’ve been wearing the necklace for the last week to give me courage as we heard difficult news from doctors and now deal with stressful situations with our little warrior. And that sentence has been in my mind constantly: I can do hard things. I’ve reflected over the past weeks that we have been dealing with everything with Beckett. And I have come to the realization….

I CAN do hard things.

I can administer 6 different meds, two times a day to my baby without him spitting it out. Some of the nurses were having a hard time and it was getting everywhere. But I was able to do it. And then he started throwing up the meds. One night, we spent 30 minutes giving him meds. We finished and he threw them all up and the doctors decided that we needed to re-administer them. We took our time so he wouldn’t throw up. After we were done, I looked at the clock. Meds had taken us two hours from start to finish. That was hard. But I did it. And I’ll do it everyday for the rest of his life.

I can watch as the IV team inserts IV after IV after IV. Five in fact, all in the span of five days. One head IV, two in his left foot and two in his right. It was hard to see him like that. It was hard to see the nurses flush his IV and realize it went bad. I cringed every time I heard a nurse say his IV was sluggish. It was so hard to see him bleeding from blown veins. It was hard hearing him cry so much. But I did it. And I was there to comfort him after.

As hard as it was hearing bad news about his liver and belly, I went in prepared to hear bad news about that. I did not expect to hear that I had to stop nursing. That was a hard pill to swallow. Even once we realized it would most likely be temporary, it was still hard. It was and still is hard to pump every three hours just to turn around and feed Beckett a bottle of special formula. It takes a lot of time and that’s hard. But as hard as that is, it’s much harder to know that I can’t hold Beckett when he’s hungry. I tried. He nuzzles and tries to nurse and cries so much. It’s hard to not be able to comfort and feed him. But I can do it. I can make it through.

It’s hard knowing that I have two precious girls who need me at home and a little warrior who is sick and needs me at the hospital. I can’t be in two places at once. It’s hard having my mother heart split in two. It’s hard knowing that others are taking care of them when I so fervently wish that I was the one home with them. But we made it work. We survived. And we are closer than ever. It’s hard to know that in the future we will be apart for much longer periods of time. That thought breaks my heart. But we will do it. I can do it.

It’s hard being at home all by myself trying to juggle everything. Trying to do our everyday things like breakfast, lunch, and dinner; getting the girls ready for the day, naps, laundry, dishes and even preschool. Then adding in pumping and Beckett’s meds. And on top of all that trying to take care of myself and giving the girls enough time with me and giving them my undivided attention. The attention they desperately need. I struggle finding enough time during the day to do EVERYTHING. It’s a battle. A hard one that I seem to be losing. But I can do it. It may take me time and I may need help for awhile but I will figure it out and it will become our new normal.

If I have learned nothing else through the past two difficult weeks, the one thing I have learned is that I CAN DO HARD THINGS. I am strong. I am stronger than I ever knew. And it’s empowering. I got this.

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Bicycle Therapy

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Now that we have been home from the hospital a few days and have had some time together as a family a few things were becoming very clear. First, the girls are getting extremely clingy and needing some love and attention from Kim and I. Second, as much hope and comfort as Kim and I feel, we spend far more time feeling pain and hollow. Third, I’m starting to feel cooped up at home and the take out/cafeteria food from the hospital is making itself comfortable in my abdominal region.

The girls were upstairs for quiet time so I asked Kim if I could escape for an hour. I quickly threw on my cycling kit, did a few necessary stretches and was out the door.

Getting on the bike had never felt so good. It had been weeks since my last ride and I was definitely having some withdrawals. I couldn’t exactly tell why at first. I thought it might be because of the warm air passing through my kit or the smells of the outdoors. It wasn’t until I approached a small hill that I recognized exactly why and what I was feeling deep inside. My first challenge. I stood up on my pedals and thrust my right heel into the ground and pulled up with my left knee and repeated one after another. I could feel my heart rate increase. The beating not only pounding in my chest but pulsating in my arms and head. I changed my grip on the handle bars to a firm grip and I was now pulling up on them with my upper body. During this beautiful moment of synergy I look down at the ground ahead of me to see my shadow. The realization hit me, “you are in control!”

Since Beckett was diagnosed with Biliary Atresia I hadn’t been in control of anything in my life. Everything was determined by Beckett’s needs and what the hospital nurses or doctors would say that we could do. On the bike I felt alive and free again. I knew that the pain I felt in my legs was self inflicted and was managed by my own desires. The pain wasn’t forced on me like the facts that Beckett will someday need a liver transplant and the life that we dreamed we/he would have will never be what we originally wanted for our son.

I get to the top of the small hill and sit back down on my seat. An overwhelming sense of freedom hits me followed by the same amount of emotions. I yearned to be in control of my sons fate. I wanted all the answers to questions that nobody could give me. I wanted our old life back. The one where all we worried about was what was for lunch and dinner that day. The one that didn’t require administering 3 kinds of prescriptions numerous times a day for the rest of our boys life.

For the remainder of my ride I pondered about the decision I needed to make. I could feel angry about the lack of control I have over life, or I could control what was controllable.

So for now, I will love my son. I will cherish every minute I have with him and be grateful for every day he is alive. I will put faith in God that the lifestyle that Beckett will have and timing of a transplant is in His hands. I will seek the best medical attention and rally my support group for prayers. I will voice the need to be an organ donor to as many people as my voice can reach. Once I am done, I will count my blessings and start over again. Wouldn’t you do the same?

Written by: Shawn

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