Updated: Oct 17, 2019
Rachel is the friend I used to go on walks with. She's the compassionate kind... the one who shows understanding and empathy and leaves you feeling better just for knowing her. When we'd walk, we'd share griefs, our hurts, our disappointments and pray for the Lord's strength to uphold us through the storms of life. "I Praise You - Psalm 139" was written for her son Ben. Their story, their storm and this song is worth knowing.
Stephanie asked me to write a little bit about my journey since Ben's diagnosis. To be honest, I've wrestled with the thought of writing this because of the fact that I am still struggling deeply with some of the medical trauma Ben went through for two years. In saying this, that was and is still a part of my testimony. I will never be in the perfect place or "have it all together," none of us will. I pray that God will use my journey to possibly help someone who may be struggling or in a storm that feels like it will never end. The LORD has been showing me that HE has brought beauty from the ashes, and my weaknesses are where HE is made strong, bringing glory to His name. “These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is more precious than gold.” (1Peter 1:7)
I am not saying God gave Ben the challenges he has had, or will continue to have. I am saying that the LORD allowed, and uses the storms in life to draw us into a deeper relationship and greater dependency on Him. I am learning that my vulnerability is the occasion for His power and His mercies are new every morning.
I had my 5-month ultrasound on my 30th
birthday to find out whether my baby would be a boy or a girl, but instead, I received a phone call that evening asking me to come in early the next morning to speak with the doctor because my ultra sound showed some abnormalities. My heart sank. I never even considered that something could go wrong. Mikiah (my husband) and I were up all night feeling sick to our stomachs about what we would hear in the morning. The doctor explained that our son appeared to have a cleft lip, and palate and that this could mean several other things. They referred us to geneticists and a full day of appointments. That was one of the most difficult days of our lives. Doctors listed statistic after statistic, and concerns, risks, and suggestions. They said our son could have heart defects, hearing loss, speech problems, chromosomal defects, feeding difficulties, and so on. They sat us at a table and gave us three options: (1) keep the baby; (2) get an amniocentesis to find out just how bad things are, (3) abort the baby. The last “option” was encouraged, and we were given little hope of a good future for our little boy. We drove home from Vancouver that day in silence; both of us in shock and staring blankly ahead of us knowing this felt like a nightmare that we couldn't wake up from. I remember getting home that evening and calling my dad, dropping to my knees and sobbing like I had never before in my life sobbed. It was painful. However, it was pain with a deep assurance in my heart of hearts that God is good. God is faithful and in control. The LORD had a special plan for my little baby that doctors seemed to disregard and undervalue all day long.
There was a lot of pain, fear, panic, and uncertainty in the years ahead after Ben was born. He has been through so much in his short, but precious life. Each week we would drive several times to appointments in Vancouver and Ben would have procedures done constantly. His mouth was taped multiple times a day, which would often rip the skin off of his cheeks. He couldn’t eat properly, because he didn’t have a palate.
This meant that every time we fed him his bottle, he would choke or vomit. I felt so helpless not being able to feed my own baby. Every day, we had to rub his lip for 3 minutes while he was crying, several times a day, to prevent scar tissue build up. Ben had a “fake palate” that we had to glue and hold in his mouth for several minutes until it dried, and do this while he screamed. Ben had nose stents up his nostrils and tape up to his forehead, and we somehow had to keep him from touching his face. This is nearly impossible for a baby!! When Ben would get a simple cold, he had such difficulty breathing (he already had difficulty sleeping and breathing smoothly on his own without sickness) and I would be glued to the baby monitor making sure he was ok and every little sound made me nervous. Ben has had three surgeries to date. Each one was incredibly emotional and difficult, but the LORD was good and faithful and always provided us exactly what we needed for when we needed it. Seeing your little baby with a face so swollen you can’t see his eyes, and he can’t see you, is heartbreaking. Hearing him cry and choking on his own blood is frightening. In all of this, the ONLY comfort was Jesus. He was so near to us, as He promises in his word – “He is near to the broken hearted and saves those who are crushed in spirit.” (Psalm 34:18)
There was a time in Bens first year of life where I would be counting down minutes until he napped (for 30 minutes at best!!) so that I could read Gods word and cry out to the Lord for help and strength. The song “I need you, oh I need you. Every hour I need you” was my anthem. I felt completely helpless, inadequate, guilty, and scared. I had this beautiful little baby, but couldn’t take away his pain. There were so many times the Lord spoke to me in the storm and assured me that He is with me. He will protect Ben and our family. During the palate surgery, there was a class of students and a beautiful orphanage in Africa that was lifting Ben up in prayer and miracle after miracle occurred. God gave me the strength to go to the operating room and hold Ben while he was put under. God gave Ben a miraculous recovery, which I now can look back upon with joy and thankfulness.
The Lord has SURROUNDED us with friends and family who have lifted us up in prayer, who have stood by us in the most difficult times of our lives, and offered unconditional love and support. I have learned and experienced so much over the last four years about my God. I have experienced His provision and mercies, His faithfulness, and His peace that passes all understanding. God blessed us with a beautiful, fearless, joy filled boy who loves life and people. Ben is strong and resilient, and has deep empathy for such a little person. He has defied the odds and the statistics and has an amazing sense of humour and brilliant mind. The geneticists we once sat across from didn’t understand that the science and the knowledge they had didn’t determine Ben’s life or our journey. God did. God has a good plan for His children. Plans to give us a hope and a future!
Like I said earlier, I was nervous to write this for everyone to see because I know I am far from what I want to be. I struggle very much with fear of Ben getting sick and needing to go to emergency. Sometimes the fear can be paralyzing. It is a daily battle for me, and I cling to the Lord for strength. But what I have learned is that no matter what you are going through, no matter how scary your storm is; the Lord is gentle and kind. He doesn’t condemn us or say, “Get your act together.” We don’t have a trial that God isn’t concerned with. We cannot stumble without evoking His compassion. We can’t be overwhelmed without His knowledge and without His appeal to cast it all on him. Whatever we are going through, God hears. (Psalm 55:17). Whatever our need is, it is met by looking way from ourselves and casting ourselves upon the Lord Jesus Christ. We must run to Him. He is the source of everything… He is El Shaddai (God Almighty) who loves us unconditionally. God meets us in our weakness and takes us from weakness to strength because of His power- His very presence is greatest when we are most vulnerable. We can lay down our stressful, painful attempts at self-sufficiency, and we can accept HIS sufficiency instead.
This beautiful song "I Praise You - Psalm 139" that my dear friend, Stephanie, wrote for Ben speaks of God knowing our anxious thoughts, examining our hearts, and knowing us fully and completely. He has gone before our family and continues to place His hand of blessing on us. Ben is fearfully and wonderfully made, and what man thought was bad… the Lord used for good. This song speaks to Gods love, purpose, and strength and reminds us to look away from ourselves and to the only One who saves. The day Stephanie played this song for Ben and I; Ben raised his little hands in the air and made big sounds of joy, as if He were praising His maker. I believe he was! If you are reading this and are going through a storm, know that The Lord is near and He is faithful in whatever place you are at. He doesn’t condemn, but offers his overwhelming, unconditional love and peace to you today.
This song is just one of the many ways we know the Lord will use Ben's life for good and for His glory! His life has significant purpose just like The African Children's Choir featured in this song! Every song purchase, stream and download of "I Praise You - Psalm 139" will benefit the The African Children's Choir, providing education through university to Africa's most vulnerable children today so they can help Africa tomorrow! We praise God for the impact Ben's life will make through this song!
The best part is at the end and will melt your hearts!
"For you formed my inward parts. You knitted me together in my mother's womb. I praise You, for I am fearfully and wonderfully made."