Her lower GI is a mess - it's been over a week again since her last BM. Friday night we could tell she was hurting and not feeling well, she sobbed when we put her to bed and she got up many times during the night. Finally, I opened my blanket and she snuggled in closely; I could feel her gasping and holding her breath as the pain came in waves. She loves her back rubbed and fingers run thru her hair - it calms her down a bit but it doesn't take the pain away.. Nothing seems to take the pain away.
Madelynne had a swim meet at 715a the next morning, we decided I wouldn't go.. Annabelle needed to stay home and sleep. Mady did so good at swimming, my heart shattered I wasn't there for her but her sissy and I laid in bed reading the text message updates and calling AK to hear the Live-Play-by-Play while she swam, it was exciting.. it's just the way our family is learning to do things.
After Belle rested and I gave her meds, she seemed to feel a little better. She asked for Chick-Fil-A so we decided to meet daddy and sissy after swim. While preparing all our meals, AK shouted for my attention, "What's wrong with Annabelle!?!! She's shaking!" We watched her silently and my gut sank to the ground while AK stared at our little girls arms and hands trembling. There just are no words for moments like these. We sat in the middle of a crowded Chick-Fil-A, watching laughter and families rushing all around us. It's like we live in a haze.. .. we don't fit in with these people anymore. On one side of me, I see my strong 6yo, chowing down waffle fries with wet hair and sun-kissed skin. She looks like everyone else in this restaurant. We're a family of four with two little girls enjoying a Saturday afternoon, on the surface we look like everyone else - beneath the surface, our hearts are in our throat and fears are heavier than any burden you can imagine.
It's in these moments that I become angry, bitter and mad at the world - I want to wrap my daughter in my arms and shield her from everything fun around her that she should be able to enjoy but can't. I want to laugh with my husband while our kids play in the play-set.... laugh with him, argue over petty things maybe, plan a grocery list or complain about the heat - I want to do all those things, but instead we sit silently. Planning our exit in case Annabelle begins to seize, analyzing where our medical supply is in our bags in case something happens suddenly and we need to help her. We watch the door and Madelynne in case we need to make a fast exit. I just want Annabelle to laugh and play with her sister while AK and I live like a happy, miserable, hilarious, annoying, typical American couple. Instead, we see the pain in our daughters eyes, hope turns to anger and reality stings like a hornet. Just a typical Saturday.
Annabelle was able to sleep and rest all afternoon. We had a wedding to attend in the evening and as we drove to the venue - AK and I discussed the heat and it's affects on Annabelle. Within 5 minutes sitting outside, her cries were all I could take so I picked her up. Her body was clammy and cool to the touch, it was miserably hot outside but she was no longer sweating. Within literally 10 minutes from our car and her body looses complete control of how to regulate her temperature. AK walked away with her to the shade and water while the ceremony finished.
The evening in the shade unfolded without problems until shortly around 8p when the pain began to hit again. Her medications had worn off and she was crying and begging to go home. We gathered our things and hit the road. One quick picture so we can smile like a pretty family and we were off.... even photoshop can't take pain from my babies face though.
The hysterical cries and screams that poured from Annabelle as we flew up 95 North Saturday night were enough to drop you to your knees. Madelynne sat beside her sissy and held her hand, telling her repeatedly "I love you sissy - it's going to be ok. It's going to get better". Annabelle was in excruciating pain and we have no idea where it's coming from. She cried herself to sleep in her carseat Saturday night.
The rest of the weekend was exactly the same. Sunday was a different chapter but same story. Around noon, after hours and hours of screaming and what appears Annabelle struggling to finally have a BM - she began to pass some stool. Nothing was hard, it was all soft (sorry, poop talk is just part of medical chit-chat) - nothing was large enough that it hurt, but as she sat on the potty and I kneeled down in front of her eye-to-eye, wiping the tears off her trembling chin, I looked down and could see the blood dripping into the potty from her bottom. We told Annabelle "You will see the doctor very soon, just two more weeks and we will go to Cincinnati to see Dr. Putnam, ok?" Annabelle dropped her head, "Mommy - I want to go to the hospital and see a doctor now, please. Please mommy? Tomorrow we go?" -For anyone that has followed Annabelle's journey or met this kiddo, you know for certain, the last thing in the WORLD she wants to do is to go to a doctor or hospital. She will do ANYTHING to not go to the hospital. For Annabelle to beg to see a doctor speaks volumes. She needs help, and fast!
My baby is being tortured by this god-awful disease. Whatever it is - is destroying our family!! Madelynne asked repeatedly yesterday to share a room with her sissy again. "But Mady - mommy and daddy bought a house so you can both have your own bedroom!" .. "I know, but Annabelle gets scared and her tummy hurts at night, if she is scared she can just come in my bed with me and I will make it better - that way she doesn't have to walk as far." A 6-yo should not have to worry about these things, but I thank God daily that she does. I thank God for giving us such a loving and caring big sister to Annabelle and such a sweetheart of a child to AK and I.
It's in these moments that I become angry, bitter and mad at the world - I want to wrap my daughter in my arms and shield her from everything fun around her that she should be able to enjoy but can't. I want to laugh with my husband while our kids play in the play-set.... laugh with him, argue over petty things maybe, plan a grocery list or complain about the heat - I want to do all those things, but instead we sit silently. Planning our exit in case Annabelle begins to seize, analyzing where our medical supply is in our bags in case something happens suddenly and we need to help her. We watch the door and Madelynne in case we need to make a fast exit. I just want Annabelle to laugh and play with her sister while AK and I live like a happy, miserable, hilarious, annoying, typical American couple. Instead, we see the pain in our daughters eyes, hope turns to anger and reality stings like a hornet. Just a typical Saturday.
Annabelle was able to sleep and rest all afternoon. We had a wedding to attend in the evening and as we drove to the venue - AK and I discussed the heat and it's affects on Annabelle. Within 5 minutes sitting outside, her cries were all I could take so I picked her up. Her body was clammy and cool to the touch, it was miserably hot outside but she was no longer sweating. Within literally 10 minutes from our car and her body looses complete control of how to regulate her temperature. AK walked away with her to the shade and water while the ceremony finished.
The evening in the shade unfolded without problems until shortly around 8p when the pain began to hit again. Her medications had worn off and she was crying and begging to go home. We gathered our things and hit the road. One quick picture so we can smile like a pretty family and we were off.... even photoshop can't take pain from my babies face though.
The hysterical cries and screams that poured from Annabelle as we flew up 95 North Saturday night were enough to drop you to your knees. Madelynne sat beside her sissy and held her hand, telling her repeatedly "I love you sissy - it's going to be ok. It's going to get better". Annabelle was in excruciating pain and we have no idea where it's coming from. She cried herself to sleep in her carseat Saturday night.
The rest of the weekend was exactly the same. Sunday was a different chapter but same story. Around noon, after hours and hours of screaming and what appears Annabelle struggling to finally have a BM - she began to pass some stool. Nothing was hard, it was all soft (sorry, poop talk is just part of medical chit-chat) - nothing was large enough that it hurt, but as she sat on the potty and I kneeled down in front of her eye-to-eye, wiping the tears off her trembling chin, I looked down and could see the blood dripping into the potty from her bottom. We told Annabelle "You will see the doctor very soon, just two more weeks and we will go to Cincinnati to see Dr. Putnam, ok?" Annabelle dropped her head, "Mommy - I want to go to the hospital and see a doctor now, please. Please mommy? Tomorrow we go?" -For anyone that has followed Annabelle's journey or met this kiddo, you know for certain, the last thing in the WORLD she wants to do is to go to a doctor or hospital. She will do ANYTHING to not go to the hospital. For Annabelle to beg to see a doctor speaks volumes. She needs help, and fast!
My baby is being tortured by this god-awful disease. Whatever it is - is destroying our family!! Madelynne asked repeatedly yesterday to share a room with her sissy again. "But Mady - mommy and daddy bought a house so you can both have your own bedroom!" .. "I know, but Annabelle gets scared and her tummy hurts at night, if she is scared she can just come in my bed with me and I will make it better - that way she doesn't have to walk as far." A 6-yo should not have to worry about these things, but I thank God daily that she does. I thank God for giving us such a loving and caring big sister to Annabelle and such a sweetheart of a child to AK and I.
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