Sweet Baby’s struggles lately have been hitting my husband and me hard. Now that our baby is two years and 3 months, it is more obvious to people he’s far behind. It doesn’t help that he is very tall for his age as well. Now when people meet him and see he’s not talking, not walking on his own, or feeding himself; I can’t help but feel the judgmental stares. Most people who meet our boy love him right away, but I still see the curiosity in their eyes. It’s like they are trying to figure him out. It really bothers me. Not to mention we have hit with terrible twos with a vengeance. The tantrums, the mood swings it’s enough to wear you out by 9am. His therapists have tried encouraging me by saying its a very good sign cognitively that he is doing this. I’ll keep trying to remind myself of that during his next screaming fit. It’s been awhile since I’ve updated you on Sweet Baby. And you’ll see why, things have been …. crazy to say the least.
The week before thanksgiving, Sweet Baby started having seizures. It was the scariest time of my life. He had 6 or 7 in a 4 day span. That week was hell on earth. I feel I have not been able to relax since. Every time he’s suddenly quite, or laying still on the floor, my heart drops and I go running to him. The doctor put him on Keppra and it’s been controlling his seizures, until recently. Not to mention how it’s affected his personality, making him aggressive & agitated. For the last month or so, he’s been having breakthrough seizures frequently throughout the day. We are currently trying to find a new medication for him. Reading all the side effects make me sick to my stomach. How does a mother choose between medicines that can severely affect his personality or one that is not good for his well being. Well we had picked a new one yesterday but when I was informed of the price, $250 for a month supply, we are back to square one. I just want to burry my head in the sand and not think about it. But my Sweet Baby is counting on me to be his advocate. He had an EEG done, it was abnormal & shows he has a tendency for seizures.
Christmas we spent at the hospital because Sweet Baby had influenza. He was dehydrated and not getting enough oxygen. They kept us overnight because they wanted to monitor his oxygen levels & to watch for seizures. The hubby slept on what they call a bed & Sweet Baby and I slept in the recliner. He wouldn’t sleep in the crib but would sleep on my chest. He needed his mommy, it’s ok because I needed him too.
About a month ago he had his surgery to correct his strabismus, and he was a fighter! I’m so proud of him. He handled recovery like a pro. It’s amazing the progress we have seen already. He’s so close to walking independently, it could be any day. He makes eye contact now, and it melts my heart every time.
He had an MRI back in January and it was abnormal. It showed T2 hyperintensities in periventricular white matter and a thinning of the corpus callosum (it’s in the center of your brain and it is how the left and right side of your brain communicates). Which in a nut shell means: he has less nerves in his corpus callosum than you and I do. So he needs longer time to process information. Having a thinned corpus callosum can cause global delays.
A few weeks ago we took him to the geneticist to look further into his delays. We have a plan of blood work (still waiting to see if insurance will cover the labs) and they want to do a spinal tap if blood work comes back negative.
With everything going on lately, I have been feeling lost. In the dark moments, when I’ve quietly cried myself to sleep, I’ve wondered if God has forgotten or forsaken us. In my new Bible study, Unlocking the Treasure (which is amazing and I’ll talk about more later), we studied Isaiah 49:13-16a.
“Sing, O heavens! Be joyful, O earth! And break out in singing, O mountains! For the LORD has comforted His people. And will have mercy on His afflicted. But Zion said, ‘The LORD has forsaken me, And my Lord has forgotten me.’ Can a woman forget her nursing child, And not have compassion on the son of her womb? Surely, they may forget, Yet I will not forget you. See, I have inscribed you on the palms of My hands”
I find this verse encouraging. When I see the word afflicted, I think of Sweet Baby and his many afflictions at such a young age. It breaks my heart he has to fight at such a young age. But then this verse points out, The LORD will have mercy or compassion on them. That’s soothing to an aching heart. When I feel like The Lord has forgotten us I must remember that His word says He will not forget me. In fact, my name and Sweet Baby’s name is inscribed or engraved on the palms of His hands. To engrave literally means “to carve; cut.” According to the thesaurus, one of the synonyms of engrave is infix. To infix means to “implant so deeply as to make change nearly impossible.” Jesus did not die for us to simply forget about us. He literally cut our names into His palms.
I need to remind myself that when I feel weary and I can’t go on, Christ is waiting for me to just simply fall into His arms. To allow Him to wrap His arms around me and find rest in His hands. The precious hands that are full of love, compassion and have our names written on them.
~Our Sweet Life~