Superstar

I think that every mother struggles at times with feelings of inadequacy in the job she is doing as a mother. When you factor in a special needs child, that feeling increases significantly.


When you have a Liam in your life, it isn't so simple to let just anyone watch your baby. Nothing is the same with him as it is with an average baby. Feeding him isn't as simple as opening the jar of baby food while he opens up his mouth like a little bird and no matter how fast you move you cannot get the spoon into his mouth fast enough. Nope. Feeding Liam is saying, "aaahh" so he opens his mouth and "mmmm" so he closes his lips together and is actually able to swallow. Feeding takes forever and don't expect him to eat everything you have there. A good day is when he eats half.


*sigh*


And Liam having play time isn't just sitting him up on a blanket with a few toys. For one, he cannot sit up yet even though he'll be 9 months old in 3 days. And second, he has physical and occupational therapy and that means certain exercises and activities designed to help him gain strength and develop his motor skills.


No, when you have 3 therapies a week, a two year old to chase around and entertain, and a house to keep up, life isn't exactly "normal" or "average."


Wednesdays are oral-motor therapy days. And last week Liam had a great day =) Let me just make a disclaimer by saying that Liam really does fantastic at all of his therapies and we always see at least small improvements from week to week. But last week, was exceptional. Liam's therapist was so excited with how well he ate, did his chewy tube exercises, and drank a yogurt/milk mixture from his pink cut out cup, that she decided he needed a sticker. SUPERSTAR.


I was beaming. 


She told me that she always looked forward to our sessions because she could tell that we were good parents. She commented on how well I know him. I know how to  understand him, even his most subtle indicators. I couldn't help that my eyes welled up with tears as she affirmed my parenting of this little guy. And I was so proud of him that I just couldn't contain the joy. 


On the drive home I cried. We've been through so much over the last 9 months. I have worked so hard to be what Liam needs me to be but most days I feel like my grade for the day is a big FAIL. I just don't have time to work with him on everything that needs work every day. At the end of most days I am calculating in my mind what we worked on or didn't work on and fear that I have fallen way too short. The pressure is immense. How "able" Liam is going to ultimately be depends very much on these therapies and our "homework." It's not a joke and it must be taken seriously. Because if for some reason there is something that he is not so good at, I am sure the first person I will find to blame will be myself. I end each day thinking, "I could have done more. I need to do more."


But the words of Ms. K just lifted my heart. And I reflected on this tiny little boy who shocked us with his arrival and how he completely turned our lives upside down because of how God made him. I was humbled. Humbled by my determined, hard working little man. Liam works so hard and I am so proud of him! I know that most days I really could have worked more with him but he is making huge gains in spite of my inadequacies. He really is a superstar =)

A Quiet Acceptance

The sadness doesn't feel the same way that it used to feel. 


In the beginning it was so overwhelming and so painful that the thought of things not being the way they used to be or the way they were supposed to be was unbearable. It was like losing something or someone and not being able to stand what the future looked like. Crying those big, ugly sobs, unable to catch your breath, falling into an exhaustion and finding a determined strength to somehow un-do what was done. It was like my mind was breaking over my inability to see and know what this new reality would be.


Like drowning. At least how I imagine drowning to be.


Liam is 8 and a half months old today (Jan. 7). I think it is fair to say that it took about 6 months for me to embrace this new reality and come into this quiet acceptance.


The sadness doesn't hurt anymore. It is more like a quiet friend, or maybe companion, who I know is always there, but I can endure its presence. I can calmly accept these circumstances and not let them steal my joy or tear down my strength. 


I feel like I've emerged from an overshadowing fog that veiled the first 6 months of Liam's life. I do not know what happened or how it happened but somehow I have survived (I am sure Jesus carried me). Barely survived. Only survived by Him. 


I have stood at the edge and been tempted to fall into a darkness that would allow me to become lost in my grief and tortured by the mournful pain and shut out from the outside. I have wanted to tell the world to just leave me alone.


But I was not made for that. 


The Creator formed this baby boy. He has huge blue eyes - the same color as his daddy's, and they have long feathery lashes. He has plump, but droopy cheeks and they lift up when he smiles and his sweet little nose gets flat. When I walk in his room in the mornings and he hears me say his name he gets excited and coos a sweet baby "good morning" and smiles and lifts his little arms up towards me. He lights up when he sees his big sister and she greets him with a not so gentle kiss and perhaps a hug that could be called crushing =) He has fun playing with his daddy and sometimes gets a little sad when he leaves to go to work.


I want you to know him. I think you'd think he was a sweet, good, happy baby. He spends his days in the shadow of an amazing little girl who radiates life, joy, energy, and even a little sass. He adores her but she annoys him sometimes too. She just loves life and enters each new day bouncing and bubbling and ends it the same.


They are just perfect. Just what I need. They are a reminder of faith, hope, love, joy, blessing, provision, life, and the One who is the author of all those things. I was made for this.


So I bask in the delight of my children and quietly accept the sadness that comes, free of charge, with those extra chromosomes we did not order.


Once that fog started to lift, the sadness changed. At first I wanted so badly to pray for a miracle to change him. But now, if Liam being a "normal" boy meant he would be anything other than the baby I have today, I wouldn't want it. I want him just the way he is today. Just the way he was in the beginning. Just the way he's meant to be in the future. My son is not "disabled" or "different," he is Liam and he just so happens to have a few extra chromosomes, they were free =) He will not be defined by 49XXXXY, he will help define it. So whatever that means, whether he completely breaks the mold or falls right in the middle of it, we will push him to be all he can, encourage him to be himself, and deep in the heart of this momma, a quiet acceptance of the sadness will rest underneath the love and pride.

Whatever my lot, You have taught me to say,

It is well, it is well, with my soul.