What I Have Learned From Raising Annie
Several years ago when we were living in Texas, I was visiting my close friend at her house one evening. My friend and I were just chatting in her family room and she had been asking me about how Annie was doing. After giving her an update, my friend asked me “What do you think you have learned from Annie?” I was a little surprised at her question, because I don’t think anyone had ever asked me what I had learned from raising my daughter with disabilities. I wasn’t sure if my friend was wanting to know how much medical knowledge I had gained, or what type of gospel or life lessons I had learned, but we ended up talking for several hours on this topic, until Justin finally called me at 1:30 in the morning to make sure I was ok. I was asked to share some of those things I’ve learned with you today, but I promise I’ll do it in a much shorter time than I did with my friend in Texas that night.
I know there are lots of new people in our ward who may not know much about our daughter Annie, so let me just briefly explain a little about her and her diagnosis. Annie was born with Aicardi Syndrome which is an extremely rare congenital condition that affects the brain. Annie’s brain didn’t develop properly, so she is missing parts of her brain and other parts are severely under-developed. We knew she had brain anomalies before she was born and we were told that if she survived birth, she would only live for a few months. She has obviously beat the odds at age 13 now. Because of Annie’s condition, she can’t eat anything by mouth so she has a permanent feeding tube directly into her stomach. Annie also has seizures several times a week, her vision appears like Swiss cheese because of lesions on her retinas, and she struggles with a lot of orthopedic issues as well. Although Annie can’t talk she communicates in other ways. Her hearing is perfect, and I know her mind understands so much more than she’s often given credit for. She is a happy and pleasant young woman and we love having her in our family.
I really could spend hours telling you everything I’ve learned from Annie—I truly do enjoy talking about our experiences with her. Over the past 13 years I’ve thought a lot about what she is teaching me. First, I’ve learned countless medical terms, acronyms, procedures, and insurance processes. And I’ve learned how to deal with frequent seizures, put a chronically dislocated kneecap back in place, how to change a g-button feeding tube, prepare and run pump feedings, use suction, how to care for IVs and central PICC lines, and how to administer IV medications, as well as countless other medical things. All of this knowledge helps me care for our daughter on a daily basis and I’m grateful for that medical knowledge I’ve gained, but even more importantly, having Annie as my daughter has taught me precious gospel lessons that I couldn’t have learned in any other way. Most gospel lesson I’ve learned from Annie are not unique to me, but I’m sure most everyone has learned similar lessons as you have faced your own challenges. Today I’ll focus on just two of the most important things I’ve learned: First, the importance and power of prayer; and second, the reality and power of the Atonement.
About 2 weeks before Annie was born, after detailed MRI scans of our unborn baby, the doctor told us about the condition of Annie’s underdeveloped brain. He said that if she happened to survive birth, she might only live for a few days or months, possibly a couple years at most. The doctor then asked us to write up our wishes for what measures we wanted taken, or not taken, to save our child during and after birth.
We prayed desperately the following days. Our world seemed to have just stopped spinning. But as we prayed, we felt surprisingly calm and peaceful. At this point in my life, my prayers changed. At first I begged Heavenly Father for a miracle—that she might be healed somehow and born healthy. But gradually my prayers changed, asking that I learn what God’s will is for her.
Virginia H. Pearce has said, “The miracle of prayer does not reside in the ability to manipulate situations and events. Rather, the miracle is that we have a relationship with God and have the knowledge that He is there, that He loves us and desires to bless us.”
A few days later, Justin and I sat at the computer to type up our wishes for our baby. After praying, we received our answer that we should not take any life-saving measures to save Annie during or after birth. Typing that letter was by far the hardest thing I had ever done in my life up until that point—essentially instructing doctors not to save my baby’s life. We continually reminded ourselves that this was the answer we had received from Heavenly Father, and realized that having her live hooked up to machines to breathe for her and keep her alive was not a desirable or comfortable life. These decisions took great faith and trust in Heavenly Father, but we felt his guiding spirit and were able to make those decisions with great peace, knowing that we could see our baby again someday and live as an eternal family.
Elder Richard G. Scott said: “A key to improved prayer is to learn to ask the right questions. Consider changing from asking for the things you want to honestly seeking what He wants for you. Then as you learn His will, pray that you will be led to have the strength to fulfill it.”
I know Heavenly Father gave me this strength. He gave me the peace I needed to carry out His will for our baby.
The time of Annie’s birth soon came and she was miraculously born without the need of any life-saving intervention. However, our new set of trials began that day as she had her first seizure a few hours after she was born. But we gradually got adjusted to life with a medically fragile child and our new way of life eventually became normal to us.
However, by the time Annie was 18 months old, her health began to rapidly decline. She lost a lot of weight over a 6 month period and was struggling each day just to maintain hydration. We tried everything doctors and therapists had suggested to increase her ability to eat, but nothing worked. We were finally told that Annie was not expected to live even another month if we did not intervene and give her a permanent, surgically-placed feeding tube. We had decided before she was born that that was not a measure we wanted taken to prolong her life, and we began talking about her death and started learning more from our hospice nurse.
We continually prayed and fasted to know if this was still the right decision, to let her return home to Heavenly Father and not suffer anymore; but as we prayed and pondered, I felt the spirit strongly testify to me that this was not the time for Annie to leave us. This answer went against every plan we had made for her in the past and it was confusing to accept this answer that we had not anticipated.
Elder Richard G. Scott explains that “to exercise faith is to trust that the Lord knows what he is doing with you and that He can accomplish it for your eternal good even though you cannot understand how He can possibly do it.”
So when Annie was 2 years old, she had 3 surgeries on her gastrointestinal tract, including the placement of a gastric feeding tube, which she now uses as her sole source of nutrition. Annie continues to have ongoing health issues, but through these experiences and many others that we have had with Annie, I know that, as we turn to the Lord in prayer, He will guide us and lead us by the hand as we continue to make decisions on her behalf.
I’ve often heard it said that we must have faith to have our prayers answered. I believe that statement is only partially true. I think we are often taught a misconception about prayer—that if our prayers aren’t answered, it’s because we didn’t have enough faith. If only we’d had a little more faith, Heavenly Father would have answered our prayers. I know this is false. While we DO need to have faith as we pray, I’ve learned that we also must use prayer as a way to align our will with Heavenly Father’s. And sometimes when our prayers aren’t answered in the way we want, it is often not because of a lack of faith, but because the Lord is teaching us to direct our faith in the plan that He has for us. Heavenly Father knows us perfectly, and he knows what we need and he will provide us with what we need as we have faith in him.
Besides learning a lot of lessons about prayer, having Annie as my daughter has also taught me about the reality and true power of the Atonement. I’ve heard it said that Heavenly Father never gives us what we can’t handle. However, I’ve learned that Heavenly Father DOES give us things that we can’t handle. Heavenly Father gives us trials or allows hard things to happen in our lives, not because he thinks we can handle them, because often, we can’t. Instead, Heavenly Father helps us handle whatever we are given. He allows us to face challenges in order to teach us to turn to him, to have faith in Him, and to teach us that WITH HIM we can handle what we are given. He will lighten our burdens and carry us through our trials that we otherwise couldn’t handle on our own.
There have been countless instances in my life with Annie when I didn’t know how I would go on without my faith in Christ and Heavenly Father’s plan. The Lord continues to sustain me through tough times as I turn to Him. Just two years ago, Annie endured a grueling 9 hour surgery to correct the severe scoliosis in her back that was threatening her health. During the surgery she had two metals rods attached to her spine with about 40 metal screws. These rods now span the entire length of her back, from just below her neck all the way to her pelvis. Thoughts of putting her through such a risky surgery that she might not survive terrified us. But as we prayed, we knew this surgery was the right thing to do. Waiting for 9 hours in the hospital lobby was incredibly nerve-wracking, yet Justin and I were at peace. We knew Heavenly Father had guided us towards that surgery for her, and we had faith that everything would go according to his will, whatever end result that might be.
After Annie was out of surgery, she was in the ICU for 2 days on a ventilator and unconscious. We learned later just how critical Annie was during her surgery, losing 1 ½ times her body’s volume of blood as she received blood transfusions continuously, trying to prevent cardiac arrest. Yet, despite what was going on in the operating room, we felt at peace, knowing that angels were there to be with Annie and comfort her as well. I testify that Christ will not leave us comfortless if we turn to Him. He will uphold us when we can’t stand on our own. Heavenly Father doesn’t give us only what we can handle, but he helps us handle whatever we are given. I have truly learned from Annie that I can do hard things with Christ’s help. Just as it says in Philippians 4:13, “I can do all things through Christ which strengtheneth me.”
Raising a child with special needs is often a very isolating and lonely experience. There aren’t many people who can relate to us on a daily basis, and those of our special needs friends that can, live rather far away. During lonely times and during our grief, which still comes at times, I try to remember that while no one can understand, the Lord understands perfectly and can send his spirit to comfort me. The Atonement doesn’t just cover our sins, but our deepest heartaches, our sorrows, and every kind of pain whether it be physical or emotional. Elder David A. Bednar has said:
“The Savior has suffered not just for our iniquities but also for the inequality, the unfairness, the pain, the anguish, and the emotional distresses that so frequently beset us. There is no physical pain, no anguish of soul, no suffering of spirit, no infirmity or weakness that you or I ever experience during our mortal journey that the Savior did not experience first. You and I in a moment of weakness may cry out, ‘No one understands. No one knows.’ No human being, perhaps, knows. But the Son of God perfectly knows and understands, for He felt and bore our burdens before we ever did. And because He paid the ultimate price and bore that burden, He has perfect empathy and can extend to us His arm of mercy in so many phases of our life. He can reach out, touch, succor—literally run to us—and strengthen us to be more than we could ever be and help us to do that which we could never do through relying upon only our own power.”
I know that prayer and the power of the Atonement are real. There are so many other lessons I’ve learned from raising Annie as well. Just to briefly mention a few more…
I’ve learned how to better serve others. Observe and serve without asking what someone needs. Even just a phone call or kind note to a friend who is struggling can mean the world.
I’ve learned to give people the benefit of the doubt. People generally have good intentions, and they don’t mean to be insensitive. We need to be kind and not easily offended by things others do or say.
Annie has taught me how to be a better mother to my other daughters. I’ve never had the experience of being a “typical” mom since Annie is my oldest child. But I’m grateful for the perspectives she gives me that help me be a better mom to all my children.
I’ve learned that I need to take care of myself. While we are taught and commanded to serve others, we still need balance in our lives. I learned early on in Annie’s life that I can quickly get burned out by her care every day. I know the importance of having hobbies and other activities I enjoy to give me a mental and physical break. It’s not being selfish, but it allows me to be a better mother, wife, and caregiver.
I’ve learned how powerful music is in inviting the spirit. During a 6 week long hospital stay, I was feeling incredibly lonely, discouraged and depressed about not getting any answers about Annie’s declining health. I decided to turn on some quiet piano music on my laptop and the spirit immediately came into her hospital room, bring me a powerful feeling of peace. I rely heavily on music to invite the spirit into my life to comfort me.
I’ve learned the power of the priesthood is real and can work miracles.
I’ve learned from Annie that the veil between heaven and earth is very thin. I know Annie sees the angels that surround her. She has a very special relationship with her Heavenly Father and Savior and she has perfect trust in them.
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 just have the most to teach us about life.
I know Eternal families are real. I will live with my family again for eternity. I know that through the power of the Atonement and Resurrection, Annie will be made whole and someday we will feel her hugs, be able to listen to her speak, and continue to learn even more from her in the eternities.
I know 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.
Although we have many struggles with Annie, she has been a true source of joy in my life and has taught me so much. Heavenly Father has not blessed her with the ability to walk or talk, or even sit up by herself, but she does know how to smile and laugh and spread happiness. She is a true example to me of patiently enduring trials, trusting the Lord, and living with joy.
I know that prayer is vital in helping us to endure our trials well, and our knowledge of the Atonement can comfort us and bring us peace, even when peace seems impossible. I have a strong testimony of this gospel that has been strengthened through my trials as well as my blessings, and as I’ve had faith in God’s plan for me and my family. I know the Lord will comfort us if we turn to him and have faith in his plan.
I know Heavenly Father gave me this strength. He gave me the peace I needed to carry out His will for our baby.
The time of Annie’s birth soon came and she was miraculously born without the need of any life-saving intervention. However, our new set of trials began that day as she had her first seizure a few hours after she was born. But we gradually got adjusted to life with a medically fragile child and our new way of life eventually became normal to us.
However, by the time Annie was 18 months old, her health began to rapidly decline. She lost a lot of weight over a 6 month period and was struggling each day just to maintain hydration. We tried everything doctors and therapists had suggested to increase her ability to eat, but nothing worked. We were finally told that Annie was not expected to live even another month if we did not intervene and give her a permanent, surgically-placed feeding tube. We had decided before she was born that that was not a measure we wanted taken to prolong her life, and we began talking about her death and started learning more from our hospice nurse.
We continually prayed and fasted to know if this was still the right decision, to let her return home to Heavenly Father and not suffer anymore; but as we prayed and pondered, I felt the spirit strongly testify to me that this was not the time for Annie to leave us. This answer went against every plan we had made for her in the past and it was confusing to accept this answer that we had not anticipated.
Elder Richard G. Scott explains that “to exercise faith is to trust that the Lord knows what he is doing with you and that He can accomplish it for your eternal good even though you cannot understand how He can possibly do it.”
So when Annie was 2 years old, she had 3 surgeries on her gastrointestinal tract, including the placement of a gastric feeding tube, which she now uses as her sole source of nutrition. Annie continues to have ongoing health issues, but through these experiences and many others that we have had with Annie, I know that, as we turn to the Lord in prayer, He will guide us and lead us by the hand as we continue to make decisions on her behalf.
I’ve often heard it said that we must have faith to have our prayers answered. I believe that statement is only partially true. I think we are often taught a misconception about prayer—that if our prayers aren’t answered, it’s because we didn’t have enough faith. If only we’d had a little more faith, Heavenly Father would have answered our prayers. I know this is false. While we DO need to have faith as we pray, I’ve learned that we also must use prayer as a way to align our will with Heavenly Father’s. And sometimes when our prayers aren’t answered in the way we want, it is often not because of a lack of faith, but because the Lord is teaching us to direct our faith in the plan that He has for us. Heavenly Father knows us perfectly, and he knows what we need and he will provide us with what we need as we have faith in him.
Besides learning a lot of lessons about prayer, having Annie as my daughter has also taught me about the reality and true power of the Atonement. I’ve heard it said that Heavenly Father never gives us what we can’t handle. However, I’ve learned that Heavenly Father DOES give us things that we can’t handle. Heavenly Father gives us trials or allows hard things to happen in our lives, not because he thinks we can handle them, because often, we can’t. Instead, Heavenly Father helps us handle whatever we are given. He allows us to face challenges in order to teach us to turn to him, to have faith in Him, and to teach us that WITH HIM we can handle what we are given. He will lighten our burdens and carry us through our trials that we otherwise couldn’t handle on our own.
There have been countless instances in my life with Annie when I didn’t know how I would go on without my faith in Christ and Heavenly Father’s plan. The Lord continues to sustain me through tough times as I turn to Him. Just two years ago, Annie endured a grueling 9 hour surgery to correct the severe scoliosis in her back that was threatening her health. During the surgery she had two metals rods attached to her spine with about 40 metal screws. These rods now span the entire length of her back, from just below her neck all the way to her pelvis. Thoughts of putting her through such a risky surgery that she might not survive terrified us. But as we prayed, we knew this surgery was the right thing to do. Waiting for 9 hours in the hospital lobby was incredibly nerve-wracking, yet Justin and I were at peace. We knew Heavenly Father had guided us towards that surgery for her, and we had faith that everything would go according to his will, whatever end result that might be.
After Annie was out of surgery, she was in the ICU for 2 days on a ventilator and unconscious. We learned later just how critical Annie was during her surgery, losing 1 ½ times her body’s volume of blood as she received blood transfusions continuously, trying to prevent cardiac arrest. Yet, despite what was going on in the operating room, we felt at peace, knowing that angels were there to be with Annie and comfort her as well. I testify that Christ will not leave us comfortless if we turn to Him. He will uphold us when we can’t stand on our own. Heavenly Father doesn’t give us only what we can handle, but he helps us handle whatever we are given. I have truly learned from Annie that I can do hard things with Christ’s help. Just as it says in Philippians 4:13, “I can do all things through Christ which strengtheneth me.”
Raising a child with special needs is often a very isolating and lonely experience. There aren’t many people who can relate to us on a daily basis, and those of our special needs friends that can, live rather far away. During lonely times and during our grief, which still comes at times, I try to remember that while no one can understand, the Lord understands perfectly and can send his spirit to comfort me. The Atonement doesn’t just cover our sins, but our deepest heartaches, our sorrows, and every kind of pain whether it be physical or emotional. Elder David A. Bednar has said:
“The Savior has suffered not just for our iniquities but also for the inequality, the unfairness, the pain, the anguish, and the emotional distresses that so frequently beset us. There is no physical pain, no anguish of soul, no suffering of spirit, no infirmity or weakness that you or I ever experience during our mortal journey that the Savior did not experience first. You and I in a moment of weakness may cry out, ‘No one understands. No one knows.’ No human being, perhaps, knows. But the Son of God perfectly knows and understands, for He felt and bore our burdens before we ever did. And because He paid the ultimate price and bore that burden, He has perfect empathy and can extend to us His arm of mercy in so many phases of our life. He can reach out, touch, succor—literally run to us—and strengthen us to be more than we could ever be and help us to do that which we could never do through relying upon only our own power.”
I know that prayer and the power of the Atonement are real. There are so many other lessons I’ve learned from raising Annie as well. Just to briefly mention a few more…
I’ve learned how to better serve others. Observe and serve without asking what someone needs. Even just a phone call or kind note to a friend who is struggling can mean the world.
I’ve learned to give people the benefit of the doubt. People generally have good intentions, and they don’t mean to be insensitive. We need to be kind and not easily offended by things others do or say.
Annie has taught me how to be a better mother to my other daughters. I’ve never had the experience of being a “typical” mom since Annie is my oldest child. But I’m grateful for the perspectives she gives me that help me be a better mom to all my children.
I’ve learned that I need to take care of myself. While we are taught and commanded to serve others, we still need balance in our lives. I learned early on in Annie’s life that I can quickly get burned out by her care every day. I know the importance of having hobbies and other activities I enjoy to give me a mental and physical break. It’s not being selfish, but it allows me to be a better mother, wife, and caregiver.
I’ve learned how powerful music is in inviting the spirit. During a 6 week long hospital stay, I was feeling incredibly lonely, discouraged and depressed about not getting any answers about Annie’s declining health. I decided to turn on some quiet piano music on my laptop and the spirit immediately came into her hospital room, bring me a powerful feeling of peace. I rely heavily on music to invite the spirit into my life to comfort me.
I’ve learned the power of the priesthood is real and can work miracles.
I’ve learned from Annie that the veil between heaven and earth is very thin. I know Annie sees the angels that surround her. She has a very special relationship with her Heavenly Father and Savior and she has perfect trust in them.
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 just have the most to teach us about life.
I know Eternal families are real. I will live with my family again for eternity. I know that through the power of the Atonement and Resurrection, Annie will be made whole and someday we will feel her hugs, be able to listen to her speak, and continue to learn even more from her in the eternities.
I know 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.
Although we have many struggles with Annie, she has been a true source of joy in my life and has taught me so much. Heavenly Father has not blessed her with the ability to walk or talk, or even sit up by herself, but she does know how to smile and laugh and spread happiness. She is a true example to me of patiently enduring trials, trusting the Lord, and living with joy.
I know that prayer is vital in helping us to endure our trials well, and our knowledge of the Atonement can comfort us and bring us peace, even when peace seems impossible. I have a strong testimony of this gospel that has been strengthened through my trials as well as my blessings, and as I’ve had faith in God’s plan for me and my family. I know the Lord will comfort us if we turn to him and have faith in his plan.
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