What To Do With Disappointment In Myself

I had to cancel my little one's birthday party this past weekend, and I was beyond upset about it. At first I didn't know why I felt such deep sadness about having to do this due to illness, when we could still celebrate his birthday later, but then I figured it out. I went much deeper than this one party. It was because I felt like my youngest son had been shortchanged all of his life so far. 

 Four years ago I gave birth to a dream and had expectations of what the future would look like when my little, healthy looking bundle became a walking and talking miracle that would help his big brother and be his friend. But with Fragile X Syndrome being diagnosed with my oldest, we decided on a cord blood test at birth to rule it out for Liam. That is what I fully expected....a negative test result. Because I had been led by God to have this little baby of my own that I never thought I would have, and prayed that he would be everything we wanted that we never had the blessing to experience in our world yet. When our pediatrician's office called me a few weeks later to say that he had tested positive for a full mutation of Fragile X Syndrome, I felt like my heart had been torn out and thrown on the floor. This wasn't right. This wasn't what I prayed for. I remember the doctor asking if I was okay and responding "mmhmm" before saying thanks and goodbye. But then I sat there, sobbing and choking on my own breath for I don't know how long. 

I have shared before how I texted my closest friend because in these moments I couldn't even move, couldn't breathe, couldn't bring myself to go pick up my crying baby from his bassinet. All I thought of was that I could NOT do everything I had done for the last ten years over again with another child. I needed somebody to pray for me then. She did and I have written before how we decided I didn't need to tell everyone about it, and that all the prayers I had prayed could still come to pass. I felt encouraged, but it still hurt. I ended up seeking counsel from a pastor I had never met before and he helped me get grounded in Jesus again and hope for a better future for Liam. 

Over the first year of his life, Liam stayed on track in his development in every way. I praised God for every milestone, and I took thousands of pictures, but these never got printed out like they always had for his big brother Lucas. I took them and shared some and saved them on my photo websites but few were ever ordered and hung on the wall. That's because now I was trying to balance the needs of a baby, who always wanted to be nursing, and a then 11 year old boy who still had his array of needs. Everything seemed to get on top of me and I couldn't keep everything in order and I experienced post partum depression to a degree, and was under some chronic stress, particularly during the summer months when my husband worked three jobs. Before all that was resolved I had an illness hit and had to go under a battery of tests as I had new symptoms every day. I learned that I had a "thyroid storm" because my thyroid had gone hyperactive and I was diagnosed with Graves Disease. Other than the outside agencies that insurance covered for my older child, I didn't have any help with the kids or the house as I tried to heal and take control of my health and well being as well as succeed in one of those "side hustles"  as home businesses are often called, because then maybe my husband wouldn't have to work so many hours and we could finally have more family time. My mom had passed away before Liam came to be and I realized fully for the first time that she was the only help I ever had. And here was another thing that it seemed so unfair that Liam missed out on. He didn't get to know the amazing, unconditional love of his grandmother. Truth be told, she was the reason we had so many pictures of Lucas around, because she would go straight to her computer and print the ones she loved most. Now here I was, flailing, and not having time for ordering or printing photos, let alone making up  beautiful scrapbooks like the ones I had made for Lucas during his nap times. I made them because I loved doing it. It was a hobby that I had fun with, capturing our memories of his childhood with cute quotes and stickers on the pages, sharing my heart about everything he had done that year in writing. The other night when something woke me up in the early morning hours, I thought about how Liam was turning four and still didn't even have a baby book. If I finally ordered photos and made the the time to make one, would I even remember the details of when those pictures had been taken? With the whirlwind I am going to continue to share about, it's doubtful. That old inner critic that works against us all wants me to think I am doing a bad job at all this. 

When Liam's first birthday came around, we decided to combine that party with Lucas's celebration, since their birth dates are only 6 weeks apart and he was only one. We had a pool party at a local gym I had belonged to at the time, and it was an all right party, but few people came. I remembered and have continued to recall the epic parties Lucas used to have when he was little, because we wanted his days to be extra fun for him, since the kid worked so hard all year. We wanted it to be an event that he could enjoy and get excited about. People used to come celebrate with us back then. Where was everyone who wanted to celebrate Liam? 

The second and third parties we had for Liam alone were rather lackluster too, and didn't rank high on the attendance factor. But it's not just friends to come to his birthdays that feels lacking for Liam in his life, not just missing out on his Grammy that bothers me, and not just the lack of time to document his memories in books since he has been attached to my hip for his entire life. It's the lack that I feel like I have had in me to give him 100 percent in order to help him reach his amazing potential. 

You see, it was around 6 to 8 months AFTER his first birthday that he stopped being right on track developmentally, lost the language he had already, and his sensory seeking behaviors suddenly skyrocketed. As I dealt with these things, I was sometimes back in that emotional black hole, yelling at God about how it wasn't supposed to be this way. We got early intervention services and I thought well, at least I know all the steps to go though here. Then covid came and the response to it changed the world, and I don't know when or if it will ever be like it was before. No more therapists were coming to our home and there was no more school in 2020 and suddenly I was supposed to keep logging in for virtual appointments that my two special needs boys would not attend to at all. I had to keep trying to do it all myself for both of them, and keep my oldest one calm after the complete destruction of his routine that he so thrived on. During this next period of chronic stress, the thyroid disease that I had recovered from came back full force. I couldn't muster the energy to keep fighting with Liam to sit on the potty or be compliant with all the many other things he needed to learn. We did have one therapist who eventually was allowed to be back in the home but that spring, she quit. The preschool Liam had been allowed to attend with an aid decided they didn't want him any longer. But they gave me some other excuse as to why he couldn't return after the quarantine time was over. The special needs facility that would have taken him when he turned 3 told me they were only doing things virtually that year. More virtual visits? No, thank you. 

So it has been that in the area in which we live, everything that could have been great for Liam has been ripped away. He hasn't been able to attend Sunday school, his Mops class disappeared, no preschool setting, because I have not been successful in finding a new one, no TSS therapy, because none exist as just like everyone, they can't find people to work. Everything that Lucas got is gone and not a part of Liam's formidable years. Of course, much of this is beyond my control. It's just me and my two FX boys, and my husband on his days off. Me who plans everything pretty much last minute these days and just tries to make it through one day at a time. Me, who often still feels like I am not getting things right and not giving Liam enough, seeing as how I am all he has. But I can't seem to spread myself evenly over everything that needs my attention and if I stay parked here in my mind, the only conclusion is that I suck as a human and mom. So what can I do, when I feel like a failure...when I am so disappointed in myself? I can choose to embrace my identity in Christ. 

What are some things that Jesus says about me? 

"As the Father has loved me, so I have loved you. Now remain in my love." 

John 15:9

"The Father Himself loves you because you have loved me and have believed that I came from God." 

John 16:7

"I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me." 

Galatians 2:20

"God made him who had no sin to be sin for us, so that in him, we might become the righteousness of God." 

2 Corinthians 5:21

According to the Word of God, I am dearly loved and favored. Although I am not perfect, God sees me as though I am because I belong to Jesus, and I do not do anything alone or in my own strength. 

I am doing better than I think I am, and I am certain that you, mom who is reading this, are doing better than you think you are too.

Have I done what it took to kick depression's butt every time it came for me so that I could rise up out of the darkness and into His glorious light? Yes, I have.

Have my kids been fed and clean every day no matter what the circumstances were? Yep! 

Have I done my best to give my little shadow my full attention when he wanted it, and stay connected with him, despite the missing things that I may have placed a little too much importance on? You bet. There have been countless snuggles, hugs, kisses and play times over the last 4 years. And while the enemy might want me to think that I am not enough because of the things Liam did not get that Lucas did, I do have those many snapped pictures to show that Liam has had lots of fun in his life so far. 

The thing is, my boys are very happy with simple things, so even if we didn't get to have the beach trips or Disney World, Liam would still be enjoying his life. He's not the way most adults are, quietly comparing what he has done with what anyone else is doing. So even though the irrational thoughts in my head picture him growing up saying "hey, mom, where was my pony party and where are all my photo albums?" The truth is, I have shown up for him every day, even when I didn't think I could. That's Jesus in me. All those times that I did the hard things and I made it, and then made it the next day. I may be human and unable to keep constantly doing with both what I was able to do with only one, but I can feel God getting me ready for a time of restoration, where He shows me more deeply that I have done better than I think, and I will do more than I can imagine for my kids, because He is at work within me and His Word says He is able to do more than I ask or imagine. It will be fun to see what God comes up with that I never could. 

Believing What I Don’t See

 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. 

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