My girls have hurt more in the past month than I have ever seen them hurt in their whole lives. Yes, they may be young, but their hearts are big, their love is big, and their relationship with their RooRoo is big. So their pain is big.
They burst into tears with no warning. They weep on our shoulders. They scream out in the middle of the night. They sob and plead with God in their prayers.
Its simple for them, they are face to face with loss. They are staring at the simple ugliness of it, its devastation, and its piercing hurt. They are watching adults deal with things they don’t understand. They are watching their precious RooRoo fight for her life.
But they are shining in midst of this darkness. I have seen them rise up from their pain. They think of a new idea each day to bless their RooRoo. Some days its coloring a picture with her, or for her. Some days its brushing her hair and putting silly clips and pigtails in it. Selfies and laughter replace worries and tears. They rub lotion on her feet, they massage her arms and legs. They fold and put away laundry. They hand knit bracelets and necklaces. They are serving and giving in the middle of their anguish and its helping to heal the pain. They are finding beauty in the pain of life right now. It is a beautiful time. They hug each other and comfort one another. They put their hands on our backs to show love and encouragement. They lay hands on us and pray for joy. They kiss, they hug, they laugh, they serve. They are beautiful. The love they show is the beauty within the pain.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuinenessof your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.
1 Peter 1:6-7
I am going to do my best to share my heart, with upmost respect.
Sometimes life takes a turn, comes crashing down, and speeds 100mph toward a stone wall. I remember coming home from school my senior year of high school to a note on the counter and a message on the answering machine of our house phone… the start of a frightening turn in life. Within a week my mom sat me down and spoke words to me that must have been agonizingly difficult. Cancer. My dad. Stage 4. Terminal. 6 months. Every bone. Nothing doctors could do.
The pain, the grief, the confusion, the fear took over. Now, they are a faint memory most days for me, the stronger memories revolve around the time I spent by my Dad’s bedside, our conversations, the day I heard his last breath, the family who surrounded us in those weeks, my friends who held me up when I couldn’t hold myself up. Those are the memories I tend to think about.
Until life takes another turn.
When the word cancer is said again and it brings up all the fear, the pain, and the agony of 15 years ago, its shocking how when you think you have healed and moved on, it can still come rushing back in an instant.
Only the last time I felt those things, I was not a Christian… I didn’t have the Lord to fall back on for comfort. This time I do. And this time, while those things are still real and normal feelings, I can see how God is navigating through the confusion, using the pain, and erasing the fear.
Its been a summer of seeing God’s hand upon our family. I can look back and see the big breath of grace that we took before we knew officially ‘its cancer’. I can see how we needed that big breath, how it prepared our hearts to stand firm, to hug strongly, to love deeply, and to fight like we have never fought before. Grief can rip people apart, tear families away from each other, and strip people of their joy. It can. But I can see how this summer, it mended us, it brought people closer, and it gave us a reason to run towards joy.
Its been two months exactly since this turn began. I have cried most days. I warn people now, “I might cry, so be ready”. Sometimes I have cried out of anguish or concern, but other times I have cried tears of thankfulness, or relief. The tears are literally the Holy Spirit speaking as they fall down my face, washing away my pain, or ushering in gratefulness.
God is moving. His goodness toward our family has been overwhelmingly and incredible. From people’s prayers, their generosity, their kindness, servanthood, their grace, and love, our family has felt cared for, and we have not been alone in this. I have seen Mom rise up and be able to stand, and fight because she is lifted up by all this love shown to her, God has given her a peace that transcends all understanding, and given strength to her soul. This time, this turn, its on Christ we have set our hope.
Now begins something beautiful.
My sweet firstborn. She is brave. She is smart. She is strong. Shiloh has and always will push me and test me and force me to be better. The day she was born and she placed on my chest, she forced my heart open and in an instant, I was hers to sharpen.
As much as I soaked up any advice from other moms, books, or articles… it was in the nitty gritty of the daily diaper changes, the rigors of sleeping and nursing her (sometimes simultaneously), and then seeing her bravely exploring the world around her, it was in those moments that she grew me into a mom. Each new milestone challenged me. Each year, new challenges became milestones.
And now, I sit in my home, watching her during her school time, and I realize she is sharpening me still. Capri and Leilani do also, but not in the same way. There is something uniquely mysterious to parenting Shiloh through each day. As the oldest, I have noticed she is the daughter who leads me down new adventures in parenting. I do not know what to expect. I can not predict based on experience what her next big milestone will be. She is unchartered territory. She holds so many of my firsts, and promises to give me many more firsts in the future.
As I watch her, and reflect on this, I realize how big my heart has grown. My heart is ready to burst open with how much love I have for her this day. I watch her read. I listen to her stumble through big words and giggle when they don’t sound right. We can laugh with each other because we have the same sense of humor. She sharpens me as she works through her math assignments. To witness her struggle and have to persevere through frustration and tears, brings me to new places of dependence on God. I do not have all the answers and I do not have any practice in parenting a six year old. So I find my prayers for her to be filled with utter submission and a cry out for God to guide me and give me wisdom.
But this little lady, my firstborn daughter is a treasure. I am so proud of her, and proud of the little woman she is becoming, the sister she is, and the pure reflection of God’s wonder that she has always been. And today, I am a little bit sharper because of her.
After attending several therapy classes with Leilani and learning all about her sensory needs, it was clear to me that I needed to start collecting objects and toys that would alert or calm her senses. Thus our sensory bin was born. I had an extra plastic bin leftover from when I organized our closet, and it seemed the perfect size for a starting point. I began making, collecting, and discovering toys and other objects to keep in it for Leilani to utilize.
Inside I have:
- 2 homemade sensory bottles
- purple bouncy ball
- red medicine ball
- chewelry, pacifiers, & other chewable toys
- fidget toys
- a bubbler
- interlocking toys
For the sensory bottles, I found the bottles at the store, and made them myself. The rice bottle is a basic I-spy bottle. I used various toys I had taken away from the girls due to them being choking hazards, play money from our school cabinet, alphabet beads, and even paper clips. I put the objects inside and then filled it with rice. The liquid bottle had glitter of all shapes and colors, sequins, plastic beads, and metal beads inside it. I then filled it with water a couple of inches from the top, and then added glycerin the rest of the way. The glycerin makes the liquid thicker and allows the glitter and other sparkly objects to float longer before settling to the bottom. Leilani LOVES them. She is very possessive of them. They provide her with lots of stimulation that actually is very calming for her. She lifts them and carries them around providing her with heavy work. I use them as my go-to car sensory toys. They have been great for our trips to town and for bringing along when we go to other places.
Then I also have the purple “bouncy ball”. Its not really a bouncy ball, in fact I don’t allow Leilani to play with it like that inside. No, its for her to actually sit on and bounce on. Our therapist recommended a small yoga ball, except they don’t really make yoga balls that small that I could find quickly, so I found this exercise “core ball”. Its the perfect size for her to sit on and bounce and trust me, she will bounce around on it long enough for me to take a shower and get ready for the day, so I say that is a WIN.
The little red ball is a weighted exercise ball… actually its a soft medicine ball that I am borrowing from my mother-in-law. Again, its heavy work for her to heave around the house. And its soft so if she drops it, it doesn’t hurt her or the floor.
Then we have lots of chewable toys, ‘chewelry’, and pacifiers available for her to do some ‘mouth work’ as our therapist calls it. She’ll often just meander about the house with one of these in her mouth.
And lastly, some of our family members gave Leilani a whole array of sensory toys for her birthday. So there are several soft fidget toys, a bubbler, and a set of molecule-shaped interlocking building pieces.
Everything fits perfectly inside the bin, and I haven’t figured out the best place in our house for it to stay. Currently I have it in our room and Leilani is learning that its her special little bin. I have several other things that I plan on adding to the bin such as headphones, books, and more weighted items for heavy work. I also have a surgical-type scrub brush that isn’t yet in the bin, because I take it around with me for meltdowns in say, the grocery store. But as those lessen, then the brush will be added to the bin.
The sensory bin is a game changer for us. I am well-stocked in defenses for when we have a bad day. It calms Leilani down and I love a calm Leilani.
Our relationship is difficult. Aren’t they all? She eludes me. Her sisters were simple, easy to know, easy to pour into, easy to love, easy to understand. Leilani however, she is different. From early on, I struggled with her. She isn’t unlovable, but she is harder to figure out how she feels loved. So I have struggled with how to pour into her and to build a strong foundation.
We recently put her into therapy and it has helped her and I more than I could imagine. She has what is called SPD (sensory processing disorder), and learning about it and relating her sensory issues to her behavior has helped me understand her better. It feels like God has given me a key to unlock and decipher the code. Not only have I been able to connect with her in healthier ways, but I have been able to handle her behavior better.
I have been learning how to protect my relationship with her. Being a Mommy is hard and sometimes at the end of a hard day, its difficult to feel satisfied with my relationship with her. She drains me like no one else is able to. She pushes my buttons, and she drives me up the wall sometimes. But I have to fight harder to love her and to protect my love for her. I have to choose to see beyond the dramatic, emotionally frenzied day we had together, and choose to rather see the precious gift she is and the honor it is to be her Mommy. I have to choose to see the joy, not the strife.
“Above all, love each other deeply, because love covers over a multitude of sins.” 1 Peter 4:8, NIV
She has an unquenchable thirst for my attention, and I have to choose to give her the security that I am here for her and that I am not annoyed by her, but rather delighted in her. Forging relationships can be hard, even between parent and child. And while my love is undeniably deep for her, my actions and my flesh need to overcome the difficulties and the struggle with raising Leilani and handling her SPD.
When Leilani was born, I remember telling her how thankful I was for her. And today I am thankful still for all that I have learned from her. I have had to learn how to see the world around me differently. I have had to learn to pay attention to details, to notice things that I would otherwise not even be privy to. To see how the world around her is connecting to her emotions, her curiosity, and her senses. And for that I am thankful. She is worth protecting. My love for her is worth protecting. Her and I are worth fighting for.
“So let’s not allow ourselves to get fatigued doing good. At the right time we will harvest a good crop if we don’t give up, or quit.” Galatians 6:9, The Message