Lessons From My Daughter With Special Needs

I have been blessed to have many learning experiences in the past 10 years since I was told the baby I was carrying had severe brain anomalies and might not survive birth.  Miraculously, our sweet Annie not only survived birth, but has grown to be a beautiful 10 year old—a milestone doctors told us she would never reach.  

About 5 years ago, a friend asked me, “What have you learned from Annie?”  I paused before answering, a little surprised at her question.  I wasn’t sure what kind of response she was expecting, but I quickly told her about traits Annie has helped me develop and mentioned how much medical information I have learned from caring for Annie as well.  The conversation didn’t go on long, but since then I’ve often reflected on what Annie is continuing to teach me.

Annie teaches all those that come in contact with her greater lessons than could be taught anywhere else.  She has taught me about compassion, service, patience, enduring, unconditional love, humility…  A complete list of everything Annie has taught me could surely fill a book, but here are just 25 things I have learned from my 10 year old daughter who has Aicardi Syndrome.

1.    God doesn’t always give us what we want, but we know He will always give us what we need, even when it’s not what we think we need.  I need Annie.  I never would have asked to have a child with such severe disabilities, yet now I can’t imagine my life without her. 

2.    Christ suffered not only for our sins, but for all our heartaches, grief, and physical suffering.  I often think that Annie is able to handle so much pain and suffering because she knows how to turn all of that over to Heavenly Father and she knows He'll always take it from her and help her through it.

3.    Eternal families are real.  The uniting of families forever inside the holy temple is real and I know that our family will live with Annie forever.  She will be made whole through the resurrection and we will feel her hugs, be able to speak with her, and probably continue to learn even more from her in the eternities.

4.    The Holy Ghost brings real peace and comfort.  We won’t always know “why” in this life, but we have faith that God has a perfect plan for us and we can enjoy the journey and trust that he has only good things in store for us.

5.    The Lord continues to work miracles and show us His tender mercies.  We may not receive the miracles we pray for, but He gives us the miracles that He knows we need.

6.    Annie has taught me how to better serve others, especially to serve without having to ask “What can I do to help?”  Just go do it!

7.    I’m not alone.  Because of Annie, I have been able to meet amazing mothers who also have daughters with Aicardi Syndrome.  My life would not be as rich if I did not have those wonderful women in my life.  I have also learned about true friendship and have learned the power and strength that close friends and family can be. 

8.    The veil between heaven and earth is very thin.  I often get the sense from Annie that she sees angels and I don’t doubt that she does. I know Annie is close to the Spirit and has a close relationship with her Heavenly Father.  She is a celestial being here on earth and more perfect than any of us.

9.    I have definitely learned more biology, medical terms, acronyms, procedures, and insurance processes and lingo than I could have learned from any class in college.  I’ve learned how to deal with frequent seizures, put a chronically dislocated knee back in place, how to change a gastric feeding button, use suction, prepare and run pump feedings, etc. 

10.    I’ve learned that just because a person can’t talk doesn’t mean they don’t have anything to say--we just need to learn how to listen.  And a person who can’t talk may have the most to teach us about life. 

11.    Annie is a special spirit in a frail frame, yet she can be so much stronger than any of us.

12.    Most people have good intentions, and they don’t mean to be insensitive. On the flip side, I’ve learned how to better communicate with people facing their own trials and grieving their own losses.

13.    We shouldn’t compare our trials to anyone else’s.  We can’t relate to other’s trials because no matter what, we truly won’t understand unless we’ve walked in their shoes.  Everyone’s trials are custom-made just for them and everyone handles trials differently. 

14.    I have learned how to be assertive and how to be an advocate for my child.  I never thought that I would have it in me to challenge a doctor about a plan of care or to insist on certain things that I know Annie needed.

15.    I can do hard things.  I’ve signed a “Do Not Resuscitate” order for my daughter, enrolled her in hospice, watched her suffer through countless procedures and surgeries, learned daily medical treatments and therapies, and I face the inevitable premature death of my child.  I’m not able to do these things because I am strong, but because I receive strength from the Lord and from supportive family and friends.

16.    I knew this before Annie was born, but I’ve learned even more in the last 10 years that I married a truly kind and selfless husband.  I am continually grateful for Justin’s help in getting up in the night to help Annie, taking time off work to go to doctor appointments with me, encouraging me to develop my own talents and go out and get breaks, and providing a shoulder to cry on when I just can’t bear another wave of grief.

17.    Annie has helped me know how to teach my children about unconditional love and about how to treat and interact with those that are different from them.

18.    I’m not superwoman.  I need help and I’m continuing to learn how to ask for it.

19.    It’s important to celebrate the small things.  We celebrated when Annie finally learned to hold her head up, when she learned to reach for toys, or whenever she is discharged from the hospital, etc. 

20.    Often, the simplest things from others mean the most.  Like having someone sincerely ask how Annie or I am doing and stop to listen to the “real” answer.

21.    We truly love the people we serve, even if they will never reciprocate the service, or communicate gratitude or thanks, give a hug, or say “I love you”.

22.    I learned very early on to not compare my children to others.  Watching missed milestones pass us by only brings grief and heartache.  Every child has their own unique set of strengths.

23.    The power of the priesthood and sincere prayer is real and can comfort us, inspire us, and work miracles.

24.    Life is too short and our loved ones won’t always be on this earth with us.  It doesn’t matter if the dirty dishes are left out, the laundry piles up, or the bathrooms haven’t been cleaned.  We never know which day might be our last to hold our loved ones.

25.    True joy comes in small packages, like in that of Annie’s smile.  Her laugh can light up a room and helps us remember that life is good!  Because it really is.