Yesterday I took Maddie to her 3rd doctor. I was really hoping that they would tell me anything but, "It's LS." I would have even taken, "She has a growth in her intestines and needs surgery." At least that is fixable, temporary and she would be out of pain." I was also not very happy to hear the doctor's suggestions. "Give her a stool softener each day." She also told me she would refer me back to dermatology. The problem, dermatology referred me to the GI department (they did not want to biopsy or treat her fissures). The next step, to see if Doernbecher has someone that can treat her.
It seems that no one understands or can help me know what to say, comfort and heal my little girl. On most days, due to the four fissures she currently has (2 going clear up the rectum), she screams out in pain and cries when she has a bowel movement. We have tried various things to ease her pain and many prescription creams. Like me, she just is not responding. So frustrating.
Before the appointment yesterday, we went to lunch together at
The Laughing Planet Cafe. We had to park a few blocks away and she was complaining of the stinging, burning and itching of the fissures as she walked. It is heartbreaking to see your little girl not be able to walk down the street at age 7 without pain and the reminder of her disease. This is reality for me and has been for a long time.
I encouraged her to keep walking and told her I knew she was uncomfortable as mom was too. After the doctor appointment she asked me if she did in fact have what I have. I told her yes and her only comment was, "You mean I will never get better?" I explained to her she would have waxing and waning of symptoms, but yes, this was how it was now. She was quiet the rest of the ride home from Portland.
As a newborn, I held her little body close and cried when I found out she had a stroke at birth. For the first year, I worked with her daily to strengthen the side that was weak and filled her days with stimulus. Each year after, I never made her aware of her stroke and pushed her daily. We celebrated her getting off her IEP an speech a few months ago and things were looking up. Now, with this new trial she has to deal with, I feel helpless. Have we not been through enough?
I cannot believe that 2/2 of my daughters has my disease. Yesterday, I did not cry or breakdown, but rather was very angry. I am going to have to dig deep and find the strength to deal with my disease and both my daughters. I have to teach them that you don't use your disease as an excuse, you don't let it define you and you push on. So hard to do 24/7 especially when you are in pain.
I had a mental breakdown in regards to dealing with my own pain last weekend. I felt so overwhelmed with my own health and now I have to deal with two more. So daunting.
Yesterday, I did not have time to reflect, but rather had to jump right into our day. After the doctor appointment, I came home to some beautiful roses my mom and dad had shipped to me. I really needed to feel loved and supported and that was just what I needed. I had to get Maddie ready for her ballet pictures and finish grading. She was so beautiful in her costume that it took my breath away. After, I went door-to-door to hand out fliers for one of my 3 upcoming fundraisers. I was even more motivated to raise money. If this stem cell therapy takes even 50% of my pain away, then there is hope for my girls.
I couldn't help but look at her and see flashes of her future before me. I was saddened by what she would have to endure. My heart breaks for my two little girls.
Ashlin's LS has manifested itself in itching and very small, very random splits (similar to how mine started as a little girl). Hers is much more manageable at this point. Maddie's has manifested itself in horrible fissures that make me cringe when I see them. Hers is very aggressive and if they don't get it somewhat under control, scar tissue, fusing and damage will occur to her female parts.
It is so hard being a mom. I pray I have the strength to be what they need and fight for them.
I don't want my girls to feel ashamed, attach their illness to their self-image and miss out on life because of it. Maddie crawled in bed after her ballet pictures and looked so sad. I asked her if she wanted a sleepover Friday night and her response was, "No, my bum hurts too bad. I just want to lay in bed." How do you teach your child pain coping skills that have taken you years to learn without being harsh or making them feel like you do not care? I told her okay and that maybe she might change her mind in the morning :(
I feel like the walls around me are crumbling and I have no way to get out. ~S
