One evening 3 months ago we had just got the girls and our man cub settled into bed. Kim and I nestled in on the couch and started our nightly routine of, “what do you want to watch?” As we were scrolling through our Netflix list trying to make a decision Kim heard the unique sounds that only a child knows how to make coming from the stairs. She turned around from the couch to face the stairs to discover which of the two mobile children it could be. It was Addie. She had tears in her eyes. Kim noticed the tears immediately.
“Addie, what’s wrong?” she asked.
“I just want Jesus to come to our house.”
“You want Jesus to come to our house?”
“I just want Jesus to come to our house.”
I chimed in, “Addie, come down and talk to me sweetheart.”
She came quickly running down the stairs as if trying to escape a fire. I pulled her onto my lap and asked why she wanted Jesus to come to our house. She replied, “I just really love Beckett. I want Jesus to come to help Beckett and Mommy feel better. I just want him to come to our house. “As the realization struck Kim and I of what Adalyn was saying and what she had been internalizing in her little mind, our eyes welled up with tears.
I didn’t know how to respond. I was speechless and felt stumped by my 4 year old. How do you tell your child that Jesus isn’t going to come to your house? He is not going to knock on our door and we are not going to get to see him. How do I explain this to her?
I wrapped my arms around her and I thought about it for a minute. I decided a prayer would be our best course of action. I asked her if we could say a prayer and she agreed. In that prayer I asked that Mommy and Beckett would be watched over by Jesus. That seemed to do the trick and Addie went back to bed.
I have pondered this experience countless times since it has happened. I have played it back in my mind over and over again. I think sometimes as adults we over complicate the simple and easy things. We poke fun of those who are innocent. We grown ups “know” too much when in reality we forget that the beauty is in the innocence of not knowing. We over analyze rather than seeing the situation or truth for what it is. We anticipate and make plans for the outcome or future without really having a knowledge of what the future has in store. At least I do. We (big people) draw a line in the sand between faith/hope and reality of life. To children this line does not exist.
As much as I prayed for a miracle that Beckett would get his transplant I did not exactly feel confident that he would get one. For a while the plan that God had for Beckett seemed unclear, uncertain, and often times completely non existent. My hope was diminishing quickly. I could honestly compare myself with the father in the New Testament who took his child to Jesus and said, “Lord I believe; help thou my unbelief.” After watching Beckett’s miracle gift come together and looking back at all the moving pieces there is no doubt in my mind that God was at the helm the whole time. He knew exactly what he was doing. It was a true miracle and nothing short of a miracle. I feel ashamed for doubting. I am embarrassed by my lack of faith. I was trying so hard to be a father, protector and a provider that I completely overlooked the fact that I needed more than ever to become as a little child.
This afternoon Adalyn and Raemee are coming to visit their brother in hospital for the first time since his liver transplant. I can’t wait to squeeze them both and tell my oldest princess, “Guess what Addie? Jesus came and Beckett’s getting better!”
by kimstin |
December 2, 2014 · 9:02 pm
Ever since I was a little girl, all I ever wanted to be was a mom. Growing up, I loved to watch my siblings and eventually I started babysitting other families. I loved it. I may not have been the best babysitter but I learned a lot. And I was so excited and ready for my own family.
After Shawn and I were married it didn’t take us long to decide that we were ready for kids. And then Addie joined our family and my dreams came true. I was a mom.
Being a mom came easy to me. Sure there were hard days and frustrating times, but it felt like I was made to be a mom. I had natural instinct about what was going on with her.
Then came Raemee. Everyone said two kids was hard. But I figured it out and it didn’t seem so bad. And then Beckett. Everyone said three kids was rough. It didn’t take long for us to fall into a routine. Being a mom was easy. I was able to make decisions and I knew what to do for my kids.
So why do I question everything I do as a mom now that Beckett has this disease? Why do I doubt every decision? Why does every little thing scare me?
My confidence has shattered. My ego has cracked. I find myself scared to make any decision, fearing I’m messing up. I kick myself all the time that I didn’t pay close enough attention to his skin color before he was diagnosed. I’m angry at myself that I couldn’t see just how distended he was before he needed his belly drained. I don’t trust myself.
I am like that fourteen year old again, not doing a very good job but wanting so desperately to be enough. To be good enough. To be trusted to do the right thing.
I remember a couple months before Beckett was born visiting my best friend in the hospital where her newborn daughter was having a hard time and was in the NICU. I remember how scared I was for her and how strong she was. I remember saying to her, “I could never do this. I could never be the mom to a sick kid.” And then just a few short months later here I am.
There is no manual. There is no guidebook. There is nothing but myself, and my fervent desire to be a good mom, a great mom. I have to let go of my failures. I have to learn. I have to trust. Trust myself, that I am good enough. That I can do this. I can be a mom and a dang good one. Because I’m trying and because I care.
And there are others who trust me too. I can see it. Our doctors trust me. My husband trusts me. My girls trust me. And my beautiful baby boy trusts me. But most of all, my God trusts me. So I will trust in Him and let go. Let go of the fear and the pain and the doubt. I will piece back together my confidence. It’ll take time. It’ll be hard. And I’ll cry a lot. But I was born to do this.
by kimstin |
November 25, 2014 · 3:07 pm
Oh how I love this little boy. My little Beckett. He amazes me everyday. He is perfection.
Because of everything going on, part of me feels like I’m being robbed of his infancy because I’m so concerned with what is happening medically. But at the same time I feel like I notice things more and little developments are more important to me. The day he found his hands will forever be etched in my memory. We were in the hospital for the third time and I remember worrying that he wouldn’t develop at the same pace as other babies his age. I knew he would spend a lot of time in the hospital in a bed and that fear overtook me. Then he started grabbing his hands and staring at them. It was my own little miracle. My vision of his future. He would be ok.
This boy can melt my heart with one smile. He can melt anyone’s heart with his smile. We had so many nurses call him a flirt because he gives up smiles so easily.
He can speak to my soul when I look in his wise eyes. And he gets whatever he wants when he puts on his pouty face.
I soak it all in. I soak in his expressions. I soak in his eyebrows telling a story. I soak in his snuggles and little grins. Each time he reaches out and grabs my face, my mother heart bursts.
I love watching him sleep.
He is so peaceful and perfect. I often wonder what he is dreaming about. I wonder who is watching over him. Being home with him the past few weeks and not being in the hospital has really made me enjoy our boring mundane life. I can almost forget that there is anything wrong with him. I can almost pretend that he is perfectly healthy.
When I was pregnant with him, I just knew that there was something different about him. I knew he was a boy. I knew he was special. Then he was born and I felt instantly connected to him in a way that I can’t describe. It was very different than with my girls. At first I attributed it to the fact that he was a boy. That mother/son bond. But now I KNOW that isn’t the case. He is my gift. He is my treasure. He is my angel sent from heaven. His is a life that I will learn from daily. And we will not let his disease defeat us.
by kimstin |
November 14, 2014 · 8:50 pm
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. It was a cute onesie for Beckett and also a necklace that says “I can do hard things.”
I’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.