I suppose I wasn’t alone in not knowing exactly what I should do or be in this life when I entered the college scene. I have learned that most of us are still figuring that out along the way, as long as we live. But one dream was etched in my heart to never be erased and it was the one thing I wanted that I felt like I HAD to do. I had to be a mother. I longed for a family of three kids since I was old enough to think about it but after meeting and later marrying my husband, we thought we would just see about that. But I could hardly wait for the time to be right to hold my first newborn baby in my arms. After recovering from a heart wrenching miscarriage, I was excited and anxious all at once with my next positive pregnancy test and started again the process of day dreaming about who my child would be, who they would look like, adorable outfits and mommy and me classes, followed by school years and the many activities my child would want to experience in his or her life. On Friday the 13th in October 2006 my dream of motherhood was fulfilled as I heard the first cry of my beautiful baby boy and got to hold him near me. I didn’t know in that moment that the dreams I dreamed were not going to play out the way I thought. When my sweet boy Lucas was still just an infant, I saw his development didn’t seem to measure up to what I was reading in Parent magazine. By the time we reached his 9 month check up, I was answering “no” to the checklist of milestones appropriate for his age. He got early intervention services to address his delays at one year of age and by 19 months old he was given an autism diagnosis. But we were still waiting for genetic tests to be returned to us then, and after one huge mistake from his medical team, a redraw on blood and another two month wait, we got those results. Fragile X Syndrome. I had never even heard of it until one of our pediatricians made mention of it among the list of things he felt Lucas should be tested for. It turned out I carry a gene for a broken X chromosome. I have one good X chromosome and one that is less than. My son got the bad one and in him it became fully mutated for the first time in the history of my family where the gene must have been passed down for generations undetected. But now, in light of his global developmental delays, low muscle tone, hyper flexible joints, prominent ears and large forehead that are common indicators of Fragile X, it was quite detectable and impacted our lives greatly. God helped me fully accept what was and be grateful for the many daily miracles I got to witness in the life of my son. He is now in his early teen years and has brought us a lot of joy and taught us everything about life that was important. He made us better. I never wanted to change the experience of having him the way he was, even though I pray for him to become more like his peers and able to live normally with a lot of independence as he grows up. I believe for a cure or healing to manifest in ways. But I decided early on to not waste time wishing for something different and lamenting what I didn’t get when I became his mom. I didn’t wish to change it but I didn’t wish to have more than one special needs child either, So the quick decision was made when we knew about Fragile X that we would not be having any more biological children. We would adopt when it was the right time so that Lucas would have a sibling and not be alone and we would get to help a child who needed a forever family and we hoped to experience some of what normal parenting must be like when we did bring the child who was meant for us home. But as Lucas grew and we kept searching different avenues for adoption, the doors kept slamming shut. Nothing was working. I followed when I thought we were supposed to go a certain way and it just didn’t pan out, so I had begun praying a lot over Lucas getting a sibling and why adoption wasn’t going in our favor because we thought it was a good thing to do and we didn’t want Lucas to grow up alone. We wanted him to have at least one forever friend. By now he was 9 years old. On a random evening when I had not been specifically praying over our situation of wanting a sibling for Lucas, but simply lying in bed at night reading, I came across a Bible verse on the page of my book that I had read and heard preached about many times before. It was a piece quoted out of James 4:2.
“....You do not have because you do not ask God.”
If you are a Christian and have had a relationship with the Lord for a period of time, you know what I mean when I say that God spoke to my heart very unexpectedly that night. I could “hear” clearly that I never asked Him for a second baby of my own without Lucas’s disabilities, but if I had, He could have provided us that. And He pointed out to me that I had never once prayed over my decision that I would not have any more children. I didn’t ask Him if adoption was what He had planned for us and had decided it for us and my husband went along because it made sense to us both. I was blown away to think I never prayed over that big a decision, but had only made it out of fear that I would have another special needs child if I tried. God just changed my mind, and when I spoke to my husband about it, he agreed that we never had prayed over what we should do and he accepted the message I told him God spoke to me. We both agreed that God knew our need, and always had provided Lucas every other thing he needed in this world. We believed God had clearly shown that we needed no interventions from medicine, and that if we prayed all the things we hoped for in a sibling for Lucas, God would give us a child of our own, unaffected by Fragile X Syndrome. After about 9 months of effort, calculating cycles and fertility, the whole nine yards, we finally got positive results in the summer of 2016 and were over the moon that God had answered our prayers and given us what He had promised. We were so sure of it, we told everyone about this pregnancy and announced it on social media. For the whole summer I had morning sickness and my stomach started to expand rapidly as it did in my first pregnancy. I am one of the lucky women who shows before 12 weeks is even up. But then, an early ultrasound showed no growth and heartbeat on the monitor. We still believed. We still prayed that God would show His power in this life that we were certain He had given us. The day before my birthday that year, Sept 6, after still having all the symptoms of pregnancy for the subsequent weeks since my last visit, the staff sadly told me nothing had changed. No heartbeat. Blighted ovum is what they called the condition, and the informed me that I should simply wait for miscarriage to occur. It was just a few days later that it did, and it was so much more violent than my first that I had to spend a night in the hospital and wait for the doctor to fix everything the next day so I could go home and take care of my son and help care for my mother who was very ill at that time and we knew, didn’t have long to be with us. I had so wanted her to hold her second grandchild before she left this earth. I thought I must have been wrong about what God told me and thought maybe I would never be able to try to have another baby of our own again. I couldn’t take another heartbreak like that. But God brought me the help I needed through the words of others. I was in an online Bible study about God’s timing not always looking like we think it will and not always being on our preferred timeline. I had also been listening to several different preachers during a revival series at Elevation Church online. One line from Christine Cain, who had been talking about the trauma of her past, reminded me that I didn’t have to make any more decisions based on fear.
“Why would you let one event from your past define your future?”
That was the end of the month my miscarriage had occured. My husband and I decided to wait two cycles as recommended and try again, but this time, I relinquished everything to God and His will and there was no ovulation tests, looking at the calendar and trying to force the issue. My mom passed away in October and we had to go through our first holiday season without her. I can remember being at church on Christmas Eve and feeling a level of comfort and hope I hadn’t expected. Two days after Christmas, I went to a walk in clinic for a UTI and the doctor told me my pregnancy test was positive. I marveled at how God worked but we did keep this one quiet for three months and made sure there was a clear heartbeat and that my doctor was happy with the growth of my little peanut before telling anyone.
We gave our whole family Valentines with ultrasound pictures in 2017 and every day we and those closest to us prayed fervently for this child to be what I believed what God said He would be. I prayed over every system and function that people have, that all would be normal and our child would be born strong and healthy. We also prayed for a girl at first, because I had always wanted a daughter, and we knew that in the event of Fragile X recurring, girls typically have less severe presentation because they have a second X chromosome to fall back on. But early blood work revealed genetics to us and we found out it was a boy. It didn’t take long to let go of my visions of beautiful dresses and ruffled bottom pants, and be excited that Lucas was finally going to have a brother. I also had always wanted him to have the opportunity to learn from male peers who cared about him and in a few years as this little one grew, we would have our chance. I kept praying my prayers, and praying scripture over our new son all through pregnancy, And I felt like God confirmed to me multiple times that Liam needed to be his name because of its meaning, strong willed warrior and protector. Just what we always hoped to have for Lucas in the time of our absence on this earth, someone who would love and protect him from harm if he wasn’t fully independent by adulthood and able to care for himself. I felt like God confirmed all of this, and that Liam was in his hands multiple times, to be what he revealed to me so many months earlier when I had just been reading a book. I was overwhelmed by His goodness when the doctor told me my due date was in September. Because I had felt God speaking to me once when I read the passage in Job about How God would restore all that had been lost. He was restoring my loss one year later. I knew with absolute certainty that our son would not carry our first child’s disability. God had changed my heart and mind for the purpose of bringing us the blessing we always hoped for and to show others through our story what belief in Him can do, and that He works all things together for our good.
We still had a cord blood test done at the birth of our son just to rule out Fragile X and I couldn’t wait for the day when I could publicly praise God as I informed everyone that Liam’s test was negative. That day never came. I will never forget the call that day, when my baby, who had already brought on a round of unanticipated PPD for me, was crying as he so often did, and I recognized the number of our pediatricians office and put him down in his bassinet and went to another room to answer the phone to hear what they had to say. She told me his results had come in and before she said what they were, I knew it, because I could hear it in her voice. Liam had a full mutation of Fragile X Syndrome. Devastation swept over me. I didn’t say anything to anyone except my husband over the phone while he was at work. And in true fashion, he accepted it and said everything would be fine. I didn’t think so. I didn’t think I could do all over what I had just done for my oldest son the last ten years. I said I couldn’t do it again because I couldn’t. I just wanted my little piece of normal in this life. I just wanted what God said we would have in this little baby as he grew. Because I couldn’t stop weeping and I didn’t even want to hold my baby that afternoon, I texted my dearest friend and told her alone what was just revealed to me and that I needed her to pray. She is gifted in prayer and I knew I had to snap out of this emotional black hole and move on with life. This friend has also taught me a lot about what she had learned of healing over the years, and how we can often block God’s blessing through a lack of faith. It certainly is repeated in scripture that when we ask for something, we must ask without doubt. We need to believe it’s already done. And she had previously pointed out to me stories in the Bible, like when Jesus sent out all the doubting people before he raised a girl from the dead, and how we learn that He could not do many miracles in his own town because of a lack of faith, so he moved on. On this day, she told me not to tell other people about the results. We didn’t want a negative view of the matter projected onto Liam, and she did say to me that we could still pray all the same prayers that we did during pregnancy and that God could still do it, And I knew she was right. And by the next evening, I had decided that God was just going to show off with Liam, but I needed someone with experience in counseling to help me sort out my human emotions. One thing I never wanted was for the way things happened to cause anyone else to lack faith in the goodness of God. A few days later, another friend came over to help me with the baby so I could catch up on laundry and things. I told her about the test results, not knowing why, and asking her to keep it between us, but that for some reason I felt like I had to tell her. The first thing she said was exactly what my other friend had said, we could still pray the same prayers we did before and God could still do it. I still think that came from Him through my two different friends who don’t know each other. He used them to speak truth to me. Then she asked me if I had gotten to talk about it with a counselor and I told her I didn’t know where to go. I didn’t want everyone to know, so I had not wanted to go to our own church and I wasn’t sure who else with a Christian perspective I could talk to about this. I had wanted it to be someone who wasn’t close to our family, who didn’t have any personal stake in our outcome because of their personal love for us. She told me she knew her pastor would speak to me. She helped me set an appointment with him and I sat in the office of this very kind stranger and tearfully spoke my whole story to him. He listened and said a lot of helpful things but one thing that stuck with me ever since that day that helped me so much. He gently let me know that I didn’t hear God wrong, because that had been my first reaction. I felt like this whole thing either made me look crazy or God look like He wasn’t good. He reminded me of the storm that rose up in the sea after Jesus had invited his disciples to board the boat with him and go over to the other side. He spoke about how scared they were and that they got angry that Jesus was resting because they thought he didn’t care about them. They reacted this way because they forgot who they were with and that he invited them to go over to the other side. He said God’s invitation to me was to have another baby, and even though the trip didn’t look like I thought it would so far, I could still know, like the disciples should have known, that we would make it to our other side, because Jesus was in my boat and He told me to get on board.
My attitude was different from that day forward, and I did continue to pray over Liam and declare positive things over him as I was advised by my close friends who were among the only few that knew about our test results. And I did see that Liam had normal development as an infant, when my older son had not. Liam remained right on track with his gross motor and fine motor development well beyond his first birthday. I was blown away that Liam would imitate things I did at only 5 months of age. He had babble and later words that he should have had approaching his first birthday and beyond. We had gotten early intervention lined up when he got that diagnosis in case we needed it but up until past his first birthday he stayed within normal ranges of development. Unlike my eldest, he had met all the big milestones when he was expected to and walked just a few days after his first birthday. But then, he began having chronic ear infections and was on several rounds of antibiotics. He seemed to spend most of his second year around the sun being ill. We got him ear tubes placed in November of 2017, and though they say follow up after surgery to make sure all is well should take place within 4 to 8 weeks, Liam’s appointment wasn’t scheduled until the very last week, two months later. At that visit, they found that on one side the tube was completely blocked over with dried blood, which explained why he seemed not to be hearing as well and was falling more regularly. They said try more drops in the ear to see if it would clear it out. We were back 6 weeks later to find out that it didn’t and he had been on yet another round of antibiotics while we were waiting due to another infection. They scheduled him surgery to replace the tubes but due to bronchitis and another illness in between, his date was moved twice. He didn’t get his new tubes until April 2018, 5 months later. So it was towards the beginning of all this that the speech he had started to disappear and soon after his diverse babbling sounds went too, His pediatricians assured me this was probably due to the hearing issues from his blocked tube more so than Fragile X. But I did ask for a speech therapist to head this off. He wasn’t allowed to get one according to the rules of the county until 19 months of age. But they did send him a special instructor who could work on sounds with him until speech could come. Never did have much luck in the department of getting sounds out of him on command, Then, he had attention deficit problems emerge, and he wasn’t doing some of the things peers his age were doing fine motor wise, like scribbling with crayons and stacking blocks. I didn’t know if it might only be because he didn’t want to, not that he couldn’t, but I asked them to send an OT anyway. The good news was that when she did her sensory profile on him, he scored close to normal, having some minor sensory seeking tendencies. But it happens he was shortly on another round of antibiotic and I eventually lost track of how many rounds he had in his young life but I know it was at least 18 rounds. Shockingly, about two weeks after scoring so well, he suddenly had an outburst of sensory seeking behavior that was horrible and it has never stopped. Truth be told, my life has felt rather nightmarish since then, because all the things I prayed against and believed were never going to happen WERE happening and they have only expanded over the months, especially since there was a time of quarantine and he easily started copying a lot of his brother’s noisy behavior. I truly never once asked “why?” when I had Lucas. This time, because it was supposed to be different, I am having a lot more trouble understanding what has happened so far. I feel like this is so far off from what God showed me and my close friends who knew this from the beginning have tried to encourage me to keep believing the supernatural vision I got even though it currently looks as it does in the natural world. But I just can’t seem to stop asking, why? I keep demanding to know why. Why did I have all that hope and evidence that things were going to be just fine for Liam if they were not? Why can I only pass on my bad gene? Why only broken chromosomes? Why didn’t God just leave me be, when I never wanted to do this in the first place? Why didn’t Liam’s outcome appear in the way I thought? Why do I have to sit here day after day with him screaming all the time instead of speaking, and getting kicked in the face every time I go to sit down on my sofa because that’s one of his ways of trying to get himself some sensory impact? Do you know that most kids with Fragile X Syndrome talk? My first son took 7 and a half years to speak a word and now his communication is still one or two words at a time. Now I have a 3 year old who won’t talk to me? Again, I have to witness children approaching him to play, and again my child only squeals at them, because he is delighted, but doesn’t know how to speak. I can’t even tell you how many times I have yelled at God out loud. Really, God, really?? I can’t stand to read people’s media updates about the cute things their kids say. I feel slighted and think how wonderful that all must be and why couldn’t God let me see that in my own family? I cry over events that everyone else had fun at but for us, they turn out badly or we just stay home because I know better than to attempt certain things with my two boys. I was on a playdate where my child was the only one who would not sit and listen at story time. And then my friend’s two little children both sang “The Wheels on the Bus” to me and I had to choke back tears. When will I ever hear my little one talk or sing? I am really seeing all this happen for the second time, now when I am SO much older and trying to beat the chronic stress? I am really witnessing another child of mine operating at a major skill deficit? When I clearly heard that it was NOT going to be this way? I have a feeling it was the excess of antibiotics that ruined things for Liam and now I haven’t been able to repair it but God can do it. Yet, this is what I see day to day. And all I want to know is WHY? Depression and defeat want to consume me. It’s like my life circumstances have imprisoned me and now someone just keeps stacking more cinder blocks higher and higher around me to lock me in from ever experiencing the abundant life Christ came to give all who believe in His name. The words of a song by Need to Breathe often come to me reminding me not to lose hope when, for the first time ever, I have questioned God’s goodness to ME. Not whether he is ultimately good but where was His goodness towards me and my children in this situation?
“In this wasteland where I’m living, there is a crack in the door filled with light, and it’s all that I need to survive. In this wasteland where I’m living, there is a crack in the door filled with light. And it’s all that I need to shine.”
I have moments where I think this defeat, depression and anger, really will eat me alive. But those things are not from God. I don’t know if I will ever know why these things happened but I know that it’s a possibility it wasn’t God at all. The things trying to consume me come from Satan, just like all other bad things in the world. I continue to fill my mind with TRUTH so that I can have hope. All these facts of my life, I feel like I have a need to come out with them, as I am now, in writing down these words, without certainty of who will read them. But these facts of my life, the test results, the sudden emergence of symptoms and loss of skills and not being able to find enough help because of the current state of our nation, those things are still just pieces of information but they are not the truth. I still have hope because Jesus is the Truth. And Jesus is still in me, and the Word says greater is He who is in me than he who is in the world. And it’s still true that He invited me to have this child of my own I never planned to have. Pastor Steven Furtick once said that if God doesn’t show up when you want Him, it’s because He’s going to show off when He comes. Ask Lazarus, he said. When I can’t see God’s hand in this, I know it’s still there and that He is for us, He is for me. This situation has shaken my faith more than anything ever has, but at my core of my being, I know God is for me. A few other things that have helped me try to sort out all the garbage in my mind about what I am facing came from other positive content that I make it a point to listen to regularly. One podcast featured a quote about how all emotional pain is self created by refusing to accept our reality. I feel like by trying to keep the diagnosis of my second child a secret so that people would not see him in a negative view or doubt God, I have been rejecting reality. I know that people who have spent any amount of time with Liam know that something is going on. How long can I keep acting like everything is fine? The speaker went on to say that no matter what happens to us, we should not spend time wishing for something different. Well since I went into this expecting something different, that has been hard for me. But the final point is what resonates with me. He said we need to fully accept our reality while still having unwavering faith that things can get better. These words on paper are me, fully accepting my reality, and reclaiming my unwavering faith. It has been shaken by the way things are, but it has not been destroyed. I still believe that things can and WILL get better for my boys, both my boys and me. I have faith that it will not always be this way. Even after experiencing some disappointment with where I wanted my first child to be at 14, and even after being made fearful after the same label was placed on my second child, and even though it’s not looking like what I thought it would look like, it will be better. It will be good. Because whatever comes from God is good, and whatever comes from the enemy who lives in this world will be defeated, And when I look through the pages of the Bible I know that God’s promises were always kept, even though sometimes it took years to come to pass. Sometimes people had to wait. There was a pastor by the name of Dharius Daniels whom I heard speaking about this over the summer. He shared the story that God told Moses he was going to use him to take his people out of bondage in Egypt and into the promised land. Those were the only two destinations mentioned and he did not tell Moses how he would get them there. He didn’t take them there on the shortest route. He knew also that their own choices would cause them to be delayed for 40 years before they reached the promise, but he left all that out when He spoke of His promise. I think there are times we just have to be ok with not having all the details. God gave me a promise. Liam is a strong willed warrior and protector who will not carry the diagnosis in the same way. Long ago, He also spoke to my heart about Lucas and told me that although I wasn’t receiving an overnight miracle, Lucas would do well in His life. What I see is information, but Jesus is the Truth. Scripture says God is not a man that He should lie, and even without seeing the big picture, I believe Him. I accept the reality, as much as I didn’t want to. I have unwavering faith that it will get better and I will witness change in the lives of my sons. I believe the walls that seem to surround us and close in will be broken down, and that any time it’s not good, it’s not finished. I may be living out parts of a story I wish had been different, but it’s only part. The Truth still stands.
