Being a Mom · Cancer · Caregiver · Childhood Cancer · Faith · Life · Lymphoma · Sophie

It’s not about the hair [July 18]

It’s pretty appropriate that I’m sharing this post today because we had her remaining hair buzzed off Yesterday. She screamed. I cried. It was terrible. 

July 18 It’s not about the hair. 

Since that very first night 62 days ago when they shut the door and said the words tumor, oncology, and chemo all I could think about was her hair. Even 5 days later when we sat down to talk about her treatment plan, I was ok until they said ‘and her hair will definitely fall out.’ I fell apart when they said that. That sounds silly now. I mean most people probably don’t think about hair when they find out their kid has cancer. Or maybe they do, I don’t know, I’m new at this. It’s not just about the hair though. It’s about what it represents. 
     I had heartburn my entire third trimester because of that hair. That hair was the first part of her that I saw when she was born. We learned how to brush it with the cradle cap brush during bath time. I stroked it for hours watching her nurse and sleep. I stressed about it growing too slowly when she was an infant. It upset me that she rubbed bald spots all along the back and sides of her head because she refused to lay on her tummy. I made a bow holder while I was pregnant longing for the day I could match bows and headbands to tiny outfits. I was ecstatic the day I could get it into tiny pigtails. She looked like Boo from Monsters Inc. I’ve wanted to be the mom that can fix her daughter’s hair into ponytails and braids for forever. 

    Here lately it was finally getting long enough to start playing with and fixing. Then Sunday night, I was trying to work out a massive knot from her just laying in bed and a huge clump just came out into my hands. It’s been falling out pretty steadily for a few weeks now but, this, it was so much at one time. My breathe caught and I just stared at it. She went about her business watching the iPad not knowing that my world was falling apart a little bit. What do I do? I couldn’t just throw it away. It’s my hair! It came from me, its mine! This stupid disease can’t take it from me. All thoughts that went through my head as I fought back tears over a handful of hair. Hair that’s first haircut will probably come from an electric razor very soon. Too soon. 

After the giant knot fell out

    I know that the whole point of this is that we will have Sophie healthy and whole at the end of all of this. I also know that I get to deal with all of this in my own way. For me, her hair falling out makes it really real. Obviously, I’m aware that it’s real. We’ve spent a total of 46 nights in Dallas, 32 of those in the hospital. We’ve been to the ER 6 times, had I think 9 spinal taps, and been to 5 outpatient clinic appointments so far in only 2 months. Believe me, I know it’s real. Her hair just solidifies it. 

    When I say the words cancer kid the first thing that pops into everyone’s mind is-tiny bald heads. We all stare and make that ‘aww’ sad face at the kids and parents when we see them in public. Its not a bad thing, we don’t even realize we do it. It’s a mark. It’s outward proof of a hidden disease. I’m not ashamed or embarrassed of her because of it- it’s part of the testimony of this whole nightmare. I am, however, I think, allowed a few moments of sadness and some anger over my baby’s beautiful hair. It will grow back but, it won’t be that first hair. The hair that I’ve stroked for 2 years, 3 months, and and 28 days. She will still be beautiful when she’s bald. You better believe I’m busting out every headband and cute hat I can find and when it grows back she’ll just have to deal with me playing with it constantly, for the rest of her life, because she gets the rest of her life. 

   As I was writing this I prayed about it like Jesus, give me something to redeem this negative post. Give me some redeeming verse or something at the end of it. But there’s not really any redeeming to it today…it just is what it is. There’s no rainbows and sunshine. Will He redeem it? Absolutely He will but as my very good friend told me today, ‘Christians love to tie everything up with a pretty bow, but sometimes things just don’t tie up. When we act like it does, people don’t believe us. He will redeem this in ways you can’t possibly predict, we know that, but it may take some more time. In the meantime you just tell the truth and your testimony will ring true to many.’ 

   So here it is today, the real, raw truth of what cancer is doing to my 2 year old. Stay tuned for how He redeems this because it’s coming.

My sweet baby after yesterday’s haircut. 


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