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STRENGTH IN NUMBERS: a diary of a family coping with cystinosis
June 7, 2018: The day our lives changed forever.
For most parents, this is the day their children are born. For us, it was about a year after Maddie’s birth — the day she was diagnosed with cystinosis.
Despite the many challenges she faces, Maddie is the strongest, most resilient one of us all. She is what motivates us to keep fighting. She will never give up. Neither will we.
Allow us to bring you into our home to show you our “new normal.” This is a look into the life of the Lawrences — mom and dad, Shannon and Kevin, Hudson, 5, and of course, our sweet Maddie.
Midnight — We’ve just finished washing about 300 syringes. Tomorrow is “medication draw up day.” Boy, it is a lot of work. Fortunately, my mom comes over to help. Time to get some sleep.
3 a.m. — Beep, beep, beep. I always need an alarm to wakes us up. It’s medication time. The house is so quiet. Maddie is sleeping so peacefully, like a little angel. It’s been a year, but sometimes I cry when giving these 3 a.m. meds. I used to cry every night. I just wish she didn’t need all these medications and supplements.
10 a.m. — Maddie is super-cuddly. This isn’t typically like her but she is getting more affectionate. Her sweet hugs are just what I need to keep fighting.
6 p.m. — It’s the night before Maddie’s next clinic appointment. We’re trying to get Maddie’s urine sample. She hates doing it at the clinic. It’s going to be a bit harder then usual now. She is in the process of potty training “herself” and the little monkey keeps teasing us. “Pee pee,” she tells us with a smile but not going. Like everything, eventually we get it.
10 p.m. — Kids are in bed. It’s the night before her clinic.
I’m anxious. How will the blood work go? Will it be one poke or two? Will Maddie cry? Will she gain weight? Height? Will she be ok with the doctor? Will we have to increase her meds?
8 a.m. — Off to Maddie’s clinic we go. Well, at least we thought. We forgot the urine. We realize it in time. We head back home and get it.
1 p.m. — Yes — the clinic is done. Maddie had weight and height gain. We are beyond happy! Our hard work is paying off. Due to the weight gain, we have to increase 3 meds. Increasing meds used to really hit me hard. It made me feel like we’re weren’t taking good enough care of Maddie. But through this last year I’ve been working on not taking it so personally. It is due to her growth.
3 p.m. — The kids are playing outside in the sandbox making us “food.” It is moments like these where I forget cystinosis and remember some of the ease and innocence of our life pre-diagnosis. Yes, I still think of our lives pre- and post-diagnosis.
10 p.m. — Hudson and Maddie has been asleep for a few hours. Hudson just woke up and climbed into Maddie’s bed to sleep. They’re cuddling. It makes me so happy that they have each other and can provide one another with such comfort.
The saying it takes a village to raise a child rings true. Thank God for the community of help we have in family, friends, physicians and the CRF. We wouldn’t be where we are without it.
Shannon and Kevin, Hudson, and Maddie Lawrence