Slow down. Calm down.

Today sucked. Mostly because I set myself up.

When I traveled to Gainesville to meet Dr. Pinkus, the neurosurgeon who was going to operate on Alyssa after birth, he started explaining to me, in depth, about her primary diagnosis, Spina Bifida. He explained the correlation between the position of the spinal chord damage and paralysis of the body. And of course, I cried. I wanted her to walk, run, and play like I did growing up. I never missed a weekend at the skating rink, I played sports all throughout school, and all I could focus on was what she would not do.

Fast forward to countless therapies later, a group of people surrounding her giving her so much support, and her sheer motivation, and cupcake can get in her wheelchair stander and roll around, still learning. She has independence in her own ways. Then I heard “gait trainer” earlier this week from another therapist. I questioned it for all of .5 seconds, considering she has no flexibility in her right knee, a severely dislocated right hip, which we as parents and doctors, 2, decided surgery would only be a short fix with no long term beneficial purpose, but I just ran with those words.

For those who may not know, a gait trainer would help improve walking ability, which Alyssa is nowhere near at this point in her life. In time hopefully, but not now. So today when I mentioned it to her primary PT, he did the right thing. He took me aside to explain to me why that would not in Alyssa’s best interest at this time.

I set myself up, and of course continued to cry for the next 45 minutes. I felt so stupid. It was like diagnosis day all over again. I know Alyssa has big things in store for her, I know her therapists want the best for her and I trust them more than anything and I got so far ahead of myself. The last thing I want to do is get Alyssa some type of device that would discourage her from all of her hard work. Today I was taught, again, to not let things excite me too much. Alyssa will get to where she needs to be in her own time, whether that means a gait trainer, a walker, a wheelchair, whatever it is. I have to slow down and support her with time.

 

“Slow down. Calm down. Don’t worry. Don’t hurry. Trust the process.”

 

 

 

Lessons learned from Cakes.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

Alyssa changed my life. When I first had her, it took time to adjust. I was in an awful space mentally. I prayed when things were looking grim. I prayed when she couldn’t breathe, I prayed with every new diagnosis, I prayed with every ER visit or admission. I prayed when she was fighting SO hard with no progress.

Then I realized, I’m only praying when I’m scared of losing her. And in those moments I was also angry. Angrily praying. Questioning. Resenting. God makes no mistakes. He did not make Alyssa to hurt her, He made her with hope. With intention. A strong purpose. So why couldn’t I pray for her needs during the “in between” time?

Our “in between” time is precious. I celebrate our hospital admission anniversaries. Its been just over 3 months since our last admission, a reoccurring admission due to her neurogenic bladder and her almost constant UTIs. She’s doing so great. I pray for her health. She goes to all of her therapy appointments with a little sass(and mommy loves it). She has 5 appointments a week, her awesome therapists are helping her reach milestones, use her muscles, and have fun while doing those things, and she just keeps going, never complaining in any way, shape, or form. I pray for her endurance. She has the best attitude for her journey, she is able to laugh through pain, she is able to persevere. I pray for her strength. And one day, hopefully in the far future, she may question her journey, and for that I pray for her understanding. I want her to learn and remember Romans 12:12, like I have had to teach myself. Pray in the moments of hope, the moments of uncertainty, moments of pure happiness, and moments that sadness may consume you so deeply that only God can help your heart heal.

Alyssa has taught me prayer. She has taught me that in the scary moments you can’t use anger or aggression, you HAVE to let God handle it, I can only advocate. She has taught me to be so thankful for the sleepless nights, the unending appointments, the traveling, the stress. She is my everything. She was made so beautifully, only God can do that. Only God can send an angel to Earth.

And now I know at night I need to pray to Him, and thank Him.

prayer1