I miss spina bifida because:
It brought Mikaylah to me.
It brought a loving, spunky, full of life daughter into my life.
It caused people to view Mikaylah as strong.
It helped others see that if Mikaylah with all her struggles could be happy and continue living life then they could too.
It gave me purpose.
It gave me something to participate in: support groups, research, friends.
It gave me insight into emergency rooms.
It let me meet social workers, doctors, hundreds of awesome nurses. (Some we worked with since Mikaylah's birth.)
It gave my son compassion for disabilities and different abled people.
It gave me the experience to educate others on how to treat those with disabilities and to teach that to children so they could know.
It gave me connections to doctors to have conferences for the local community.
It allowed me to participate in my daughters life in ways most parents do not get to.
It allowed me to spend time with Mikaylah and have her as not only a daughter, but a companion.
Hospital stays brought us closer as we spent time holding hands, praying, and talking about secrets.
It allowed me to meet people I never would have met.
It allowed me to see how others feel when they are different than everyone else. (Minorities)
It allowed me to have a voice. (When others would ask what was wrong with her, I would educate them, "There's nothing wrong with her, whats wrong with you?")
It helped me slow down.
It helped me to appreciate the small stuff.
It taught me to not take things for granted to celebrate every milestone.
It taught me that potty training is not the most important thing.
That walking isn't everything.
It taught me that getting somewhere on-time isn't always posible, plan for accidents!
Always take an extra set of cloths.
Eating isn't easy for everyone.
It taught me that sleep and rest is important for a body.
It taught me that pain is good: it gives you signs that something is wrong.
It taught me to depend on others and to ask for help.
It taught me that God doesn't always have healing in mind. That sometimes he creates a baby in a mother's womb and they are perfect in His sight, but not in this worlds sight. He creates that child for a reason, for a purpose, for the reasons listed above. As much as our church wanted Mikaylah healed, as much as they prayed, she wasn't healed. Why do you think this was? Some might say because we didn't have enough faith, others say we needed to press in more... why can't we just believe that Mikaylah was right where God wanted her. That he had a specific plan for her and it included Spina Bifida.
This month is Spina Bifida Awareness Month... I'm not going to lie Spina Bifida was the best and worst thing that has happened to me thus far. It gave me Mikaylah and it took her away.
The day she was born was the first time I had heard the word Spina Bifida and I heard it after the nurse delivered her. The nurse was screaming, the nurse did not know what to do. I was confused and scared and wanted to know what was wrong. Mikaylah was beautiful. That began our journey with Spina Bifida and we studied and accepted her with open arms and she gave us everything we needed. She was perfect. Even with all her challenges and hospital stays she was perfect. It wasn't till 2010 that we decided after several years of putting it off to have a surgery that could help Mikaylah become independent with her bladder and bowel maintanence. That surgery seemed to bring the independence she needed, but with it came complications that eventually took her life. Her paralysis did not allow her to feel the pain of infection that took over her body.
What I take from this... all the above. Accept people. Don't judge the will of God for others lives. Don't tell others what God wants for them, thats not your job. Love people, learn lessons from others. Live each day as if it were your last. Be thankful. Be grateful even when you feel there is nothing to be grateful for. Look around you and embrace differences. Everyone does not need to be the same. Normal is in the eyes of the beholder. Talk to people. Show interest. Be honest with yourself. Embrace the journey. Love your family, without judgement. Love your friends and support them.
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