What a week this has been! A week ago I received the early morning call from my friend Debbie telling me her son Dillon passed away. What heart ache! Dillon had a mitochondrial disease that took him away little by little. The doctors said there was nothing else they could do for him. It hit too close to home for us. We miss Dillon & hurt for his mom Debbie & his brother Corbin. Monday was visitation & Tuesday was the funeral. They need our prayers now more than ever.
Monday my sweet friend Carman took her week old baby in for her check up. They found a hole in her heart. She spent several nights at Egleston. She will be having open heart surgery when she is 6 months old.
On Wednesday one of Michala's Aicardi sisters passed away. She was 11 months old. Her mother & I had recently met online. It was so very hard to accept this for all of us. On Thursday another one of Michala's Aicardi sisters passed away. Again our extended Aicardi family was hit hard. Please remember these two families in your prayers.
Michala's Aicardi sister Kaia in Norway is not doing well. This has been hard on us to be so far away. We have reached out with our prayers & support. Please keep she & her family in your prayers.
I realize tragedy, sickness & sadness hits all around the world every day, every minute, even second. It's hard sometimes because our lives have been affected with Mitochondrial, Panhypopituatarism, Aicardi, Epilepsy, Cancer, Austism, Clubfeet, Infantile Spasms & so many more medical things that our circle of friends & extended family is large. We are so thankful for that but when it hits it hits hard & sometimes so often. I have to say it does make it nice to have someone awake on the other side of the world to reach out to for answers at 3:00 AM.
Earlier in the week we found a place, a spot, a knot on Michala's stomach. We thought constipation & began aggressively treating that. No big changes. Every "c" mom has this wonder & doubt tucked into the back of their mind whenever something new, questionable & different arises in their child. Friday morning Mike said you really need to take her to the doctor. All week I tried my hardest to push the possible of "c" to the back of my mind & say it was constipation. Friday I took her to the doctor. We were told it was a mass, possibly a benign tumor. The unsaid stuff is what got us. The possibly part of it. They were going to schedule an ultrasound & KUB at Egleston.
I had posted a message on FB & asked for prayer for Michala. I wanted everyone to specifically pray she was constipated & she would poop. LOVE FB! Love getting responses back from all over the world knowing she was being lifted up right then.
Friday night I don't know if I ever closed my eyes until Mike woke up & said please go to bed, I will stay up. God bless him! He does that quite often & seems to know just when I need it. I was woke up to Michala laughing hysterically.
I jumped up & ran to her knowing it was a bad seizure. When I got to her I said Michala. She looked at me & smiled her funny grin. Then she laughed. No seizure so I started checking her tummy. NOTHING! No mass. Yesterday I couldn't even say or type the word mass. Last night this huge thing was sticking out of her stomach. This morning it was gone. No poop - nothing but it was GONE!
Yesterday I asked for prayer for poop. This morning I was reminded just how very big my God is. He took it completely! No questions asked. He is so much bigger than I realize sometimes. As the rains came & the seizures increased I was able to have the reminder that our God is big enough to carry us all through this journey.
Have a peaceful & rainy Saturday. Well if it is raining in your part of the world. If not enjoy the sunshine! Whatever you do be blessed & thankful!
With a thankful heart!