The Gift of Surrender

The Gift of Surrender

 Today marks the 3 year anniversary since Anna’s friend, Holly, went to Heaven. Holly was 2 ½ years older than Anna and had the same diagnosis- Monosomy 1P36. We met Holly just after her 3^rd birthday when Anna was just 6 months old and had just been diagnosed. Anna’s and Holly’s syndrome was estimated to affect 1 in 10,000 kids in 2001- the time of Anna’s diagnosis. That made it fairly rare. Since that time, the rate of diagnosis has been changed to 1 in 5,000 kids, making it a little less rare. In 2001, the support circle of families with a child with Monosomy 1P36 was very small and spread out. Some people didn’t know of another child with their child’s syndrome for 100’s of miles. The internet was beginning to be helpful in connecting people, but it was nothing like it is today. So, we were very blessed to meet Holly, who lived just 10 miles away.

Meeting Holly was both helpful and scary for me. Holly was a few years older, which made her mother Sandra practically an expert on the syndrome by the time I met her. She had all of the available resources and studies that had been created to provide more information for families and doctors. And since she had a couple more years of personal experience in caring for a child with Monosomy 1P36, she was a wealth of good advice and recommendations. All of that was very helpful and informative.

The scary part was that every child with the syndrome is so different from another that we had no way of knowing if Anna would be as affected as Holly, or less compromised like some of the other kids we read about. At that time, Anna was affected by seizures, acid reflux disease, and was already developmentally delayed. At sweet Holly’s young age of 3 years old, she was already having over 50 seizures a day, had a G-tube for feeding, suffered from many bouts of pneumonia, and was very developmentally delayed. On top of that, Sandra told me that Holly had never smiled or showed joy, other than during a laughing-type seizure. Her precious little girl was on so many strong seizure medications that it had seemed to suppress her abilities to express her emotions, other than crying from pain. I just remember being so scared at the thought that Anna might not ever smile at me, either.

The fears that entered my mind in those early days kept me awake at night. I tried to imagine how I would handle having a child who might never be able to express herself to me. And worse, never smile. On top of that, thinking that her seizures could get much worse and she might eventually lose her ability to eat by mouth was devastating. I didn’t want her to be on so many medications that she would be so drugged that she would just sleep a lot. I also didn’t want her to lose her ability to eat by mouth, which was something she enjoyed very much. She was just a breast-fed baby at that time, but eating was her most relaxed and comforting activity. I remember praying and begging God to let me just wake up from all of this and find out that it was just a bad dream. I prayed so desperately for Him to take this diagnosis away from Anna and let us find out that it was all a mistaken test result. I didn’t know it back then, but God already had the plan to use everything that Anna would go through for the good of so many people around us. And knowing Holly and her family was the first blessing that He gave us.

I learned so much about courage by watching Sandra and the whole family care for and love Holly in such a complete and unconditional way. They taught me about acceptance by the way they had come to love Holly just as she was and knowing that God had a plan and a purpose for her life, just like He did for everyone else. Her siblings were so mature for their age because they had this little sister who couldn’t do anything that they could; so they were there to care for her in their own special, unique ways. Her older sisters painted her nails and took care of the ‘girly’ stuff and her big brother vowed to always protect her. Our families had a bond that never would have existed had it not been for our unique little girls. And, on top of that, they shared similar facial features that made them look a lot like sisters. Baby Anna looked a lot like baby Holly had looked; and even to this day, Anna reminds Holly’s family of how Holly looked at certain ages. It’s very special, yet bittersweet.

Right now, Anna is exactly the same age that Holly was when she went Heaven. Right now, my small circle of friends with Monosomy 1P36 kids has gone from 3 kids to just Anna. We had eventually developed a friendship with another family a few hours away whose daughter, Meg, was just a few months younger than Anna. Their daughter went to Heaven when she was only 5 ½. And then 5 years later, Holly joined little Meg. Of course, I have met other people online and have grown that circle; but it’s different than the original circle of 3 who felt so connected to one another that we were like family.

Being the only parent left whose child is still alive is strange, lonely, frightening, and in a small way, hopeful. It’s hard to explain the emotions that go with it. It’s hard to put into words how I’m happy that Anna is healthy and alive, but unknowing about her future. It is definitely a situation in life that requires such an intense trust in God that I completely understand the idea of ‘blind faith.’ It is the first situation in my adult life that taught has me how to completely surrender to God every single hardship, anguish, struggle, pain, fear, insecurity and feeling of complete exhaustion that I could possibly have at one time. Learning how to trust God went to a whole new level when I finally reached the place of complete surrender to Him.

It was during Anna’s first year of life that I learned that people couldn’t be more wrong when they tell you, “God doesn’t give you more than you can handle.” That is the biggest misconception that people have about struggle and hardship. The TRUTH is that God allows us to live in this fallen world where we WILL experience pain and hardships that there is NO WAY we could handle WITHOUT His help and provision. Sure, He has the power to stop things. Sure, He could protect us from every negative experience. However, He gave us free will and He gave us the CHOICE to trust Him or not. Sadly, it is because of MAN’S free will that many of us are hurt, abused, or wounded. But when we are not rescued from horrible circumstances, we have the choice to get angry at God for it, or to press in and trust Him even more. When I chose to press in and trust Him, I discovered the truth of His Word in 2 Corinthians 12:9 that says, “My grace is sufficient for you, for my power is made perfect in weakness.”

Folks, I can promise you with more certainty than anything else I could ever share in my life that if you can grab ahold of that scripture truth and apply it to every single difficult circumstance in your life, you will experience a power stronger than anything you ever known!

When Anna was 9 months old, I literally laid her down in the middle of my living room floor and created an alter before God, giving her life to Him and promising to Trust Him no matter what she went through. It was on a night that I had been up with her for hours, screaming and crying in pain from acid reflux that we would later discover had caused severe erosion in her esophagus and a hiatal hernia above her stomach. I had reached the point of “more than you can handle” and was desperately crying out to God for help! Up until that moment, denial, positive thinking, staying strong, etc. had all proven to be limited in dealing with such a situation. All I had left to do was cry out to God and BEG for Him to take this hardship from me and carry it for me. And He did! In fact, the minute I picked Anna up off of the floor and collapsed into a chair with her fragile little body on my chest, a rush of peace poured over me through the top of my head and filled my entire body. I felt as if Jesus, himself, had picked us both up and was holding us like an infant completely engulfed in a blanket of divine peace. The strength and power that I felt was completely not my own! I felt just like Paul, after God spoke in 2 Corinthians 12:10, when he said, “I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” It was in my total weakest moment that I felt the most power I had ever felt!

People, I am not strong. I am weak and flawed and anything but a Supermom. When people say, “I don’t know how you do it. It must be so hard,” they couldn’t be more correct. I CAN’T do it and it IS HARD! But I stand on God’s promise, every single day, that “I can do ALL things through Christ Who strengthens me.” (Philippians 4:13) And when I wake up and forget to remind myself of that Truth, it is not a good day!

Today, there is a list of things that I can say with certainty. Number 1 addresses the feelings of being the only one left in my circle of friends. With that, I am CERTAIN that I have total peace- the peace that surpasses ALL understanding (Philippians 4:7), as promised if we trust Jesus with our lives. I have total peace with whatever circumstance Anna goes through, even if God calls her home. Living with the knowing that I may very possibly bury a child, one day, is not easy by any means. But, I HAVE to believe that God loves Anna more than I ever possibly could with my human limitations. And, if He loves her even more than I do, then I am CERTAIN that he will always do what is best for her. For He has promised for Anna, “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

The second on the list addresses the questions I hear so often: “Will she ever walk or talk? Do you believe that God will heal her?” Absolutely, I believe it! It is promised in Hebrews 12:13 that “the lame may not be disabled, but healed.” Whether Anna walks and talks while on this Earth or doesn’t until she is on the other side of Eternity in Heaven, she IS healed! It is already done. It is a promise from God. As soon as I was able to release that one to God and trust His timing for Anna’s healing, I quit focusing on the unimportant detail of the WHEN it would happen. The fact is that Anna’s disability “happened that the work of God might be displayed in her life.” (John 9:3) She wakes up with a smile on her face EVER SINGLE DAY. She is happier than any other child I have ever known. She doesn’t care that she can’t walk and she is certainly not going around sad and depressed all of the time because she can’t talk. She is the strongest person I know, taking every single illness, setback and surgery in stride. If that isn’t God’s work, I don’t know what is! Besides, she has touched more lives in her 13 years of being in a ‘disabled’ state than I have in my 40 years of being in an able-bodied state. I have complete assurance in Psalm 139:14, 16 that Anna “is fearfully and wonderfully made; your [God’s] works are wonderful” and “that all the days ordained for [her] were written in your [God’s] book before one of them came to be.”

The third and final question that I want to address has to be with whether or not I believe that Anna’s life has a plan and a purpose, just the way she is. There is no doubt in my mind that God has already used her just like she is, just as He used Holly’s life just as she was. Holly’s memorial service was FULL of people who had been touched by knowing Holly. She was most definitely a special angel sent to this Earth just as she was to serve a much bigger purpose than anyone can understand. And while her family has comfort in knowing that she is now running and talking and dancing in Heaven, their lives will never be the same without her here, until they are with her again.  Just as Holly’s family could tell about Holly’s ministry here on Earth, I can most definitely share stories about Anna’s ministry, too.

The one time that stands out most in my mind is the time that Anna’s most pure and loving heart spoke right through the hardened, bitter outer shell of a homeless man and reached right into his very soul. His name was Dennis and he had been homeless for a long time. The ravages of homelessness, drunkenness and time had waged heavy on his body and soul. He was angry at people, angry at God and he wanted to die. God had told me to take Anna to meet him after the very first time I, myself, had the experience of meeting him. His hopelessness was so sad to see that I felt compelled to find a way to reach him.

I wheeled Anna right up to him while he was complaining to someone about his life’s horrible experiences. He was very drunk and angry that day. It took a few moments for Dennis to notice her in front of him, but he was left speechless the second he looked up and saw her. Even though she couldn’t speak a single word of wisdom, or quote some great scripture to him, she sat there in front of him- the most beautifully pure example of God’s Truth and love- reaching right into his soul. When he was finally able to say something, he asked her name and asked if he could touch her. Tears welled up in his eyes as she smiled at him with her unconditionally loving eyes, showering him with complete acceptance. He asked several questions and then began to cry, saying how he felt so bad for complaining about his life when there was someone right in front of him who had it much worse. But I corrected him and told him that Anna didn’t have it worse because she was happy. I told him that she had the joy of the Lord and wasn’t sad about her circumstances because she knew God’s love for her. As I said the words, I realized exactly how God used Anna just as she was.

Anna is the perfect picture of God’s love each and every day. To wake up happy, no matter the circumstances, and to be able to show love to all of God’s people is a beautiful thing. Anna gets it. Thanks to her, now I get it, too! There are many things in my life that I might not get right, but I am SO thankful for Anna because it is through her that I have learned so much about God’s love and power. If she gets to Heaven before me, I’ll bet that she will have even more to teach me when I get there, too. Until then, I’m going to stay thankful for her and thankful to God for the gift of Surrender.