Today you will be in Heaven for six years. I watched the video that the photographers at Now I Lay Me Down To Sleep provided and I cried.
A couple of days ago it really struck me how I am a different person than before having you in my life. Time and experiences do change people, but being pregnant with you and holding you in my arms while you took your last breath changed me forever. It didn’t really strike me until I contemplated the current goings-on in my life.
About a month and a half ago your big brother, Jadon (who was only six when you were born!), was diagnosed with Type 1 diabetes. That means for whatever reason his pancreas decided to stop working and Dad and I need to give him insulin shots so that he can stay alive. (Ask God about the pancreas and how it works—He made it and can explain it better than I can!) Just like with you, this was nothing we did or didn’t do. Trisomy 18 just happens. Type 1 Diabetes just happens.
Jadon felt and looked awful when we took him to the doctor. The thing that still strikes me as odd is when the doctor told me that Jadon had diabetes I had no sense of fear.
When we knew something was wrong with your development there was a lot of waiting and wondering. First we thought you were just small in your development, then we saw something was wrong with your heart. Then at the next appointment the ultrasound tech started listing off problems with your brain, your feet, your hands, your heart, your kidneys….I don’t think she was supposed to do that….Then the doctor came in making it all real. There was some sort of chromosome abnormality and he wanted to do a test to determine what it was. End result–you could die in utero or if born alive, you would have a very short time on earth. Tears came and didn’t stop for days. The doctor was gracious to have one of the quicker tests done so that we didn’t have to wait for the total final results. And then days (which felt like years) later he called saying you have Trisomy 18 and hypo plastic left heart syndrome. The tears kept coming. The pjs didn’t get changed for days.
I remember how it tore me up when your oldest brother, Aaron, was diagnosed with hirschprungs soon after he was born. He had to stay in the hospital, I couldn’t be with him overnight, he was in pain—it was just all around awful. Then he had to have a surgery to have a colostomy. I didn’t even know what a colostomy was and all of a sudden I had to do all the care for him having one! A year later he had a surgery that had a long healing process.
Did it ever enter my mind that he would then be diagnosed with Hepatoblastoma before he turned two years old? No! I breastfed, I fed him healthy foods, I stayed home with him and Hali—he wasn’t supposed to get cancer. But he did. He also survived and is thriving.
Not only did he survive, but we all did.
And here we are now. Here I am now. I am not the same—there is no way I could be.
The common theme that runs in my mind is “death”. Aaron could have died a few times over. You did die. If things had gone wrong with Jadon, he could have died. One thing I learned when Aaron had cancer: We are all terminal. There are no promises how long we get to live. Because I knew your life would be short on earth I purposed it in my heart and mind to make your life worth living—and I didn’t even know if you would be born alive. You were loved, kissed and smothered with all kinds of affection. The hardest part for me to wrap my brain around was holding my dead child—how do I do that? I still don’t know how I managed, but I remember looking at you and thinking how you looked like royalty. Such peace and tranquility on your face. That memory is so beautiful, when I had feared it would be one of the ugliest.
Now, in the midst of all of this, instead of dwelling on the death I think of the enriched life I can now experience.
The above was and still is my mantra. I never knew how strong I was until being strong was the ONLY choice I had.
Philippians 4:13 says “I can do all things through Christ who strengthens me.” And He did strengthen me—the reality is, though, I still had and have to make the choice to be strengthened by Him AND to actually DO the ALL THINGS that He is calling me to do. I didn’t know I had it in me, Dekar. I knew in my heart what I felt I had to do and wanted to do—but I didn’t know how to do it. And I did it. But honestly, it amazed me that things fell in place. God gave me a gift when He gave me you. Not just the gift of YOU, Dekar, but He has allowed me to see strength in myself that I didn’t know I had. Even when things didn’t work out as I had hoped, I had the strength and grace to be able to look beyond the disappointment and pain and have compassion and forgiveness.
And now we come back to Jadon’s diagnosis. “If I can go through a child with cancer and hold Dekar as he takes his last breath, I can do this.” That is why I didn’t experience fear. I have no doubt in my mind that I can grow with Jadon and help him to learn to manage his diabetes. I know that I have the strength for this next race because I have been trained by The Best. I know that is the ONLY choice I have because Jadon’s life depends on it. I know there will be hard times and scary times. But I can do this. I already have.
They say to never judge a person because you don’t know what battle they are fighting—God is the only One who has truly known the internal battles I have fought all my life. God has lifted my face to His through some of the worst experiences a mother could ever imagine. God has used these hard experiences in my life for my good and for His glory.
So today, Dekar, although I cry, I also rejoice. I rejoice in the goodness of what the Lord has given me through you. I couldn’t save your life, but in a way, I believe you helped to save mine.
Happy Heavenly Birthday, Dekar. We are having Turtle pie, French silk pie, and pecan pie with whipped cream –with sprinkles–in your memory and honor. Thank you for all you have given me. I love you and I miss you.
And whoever receives and accepts and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me. Matthew 18:5 (Amplified Bible)