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.
