Wesley and the Terrible, Horrible, No Good, Very Bad Day
Ok, maybe the blog title is over dramatic especially considering some of the very scary days we had while Wesley was still in the hospital, but this was up there.
This morning was the last regular day of Anchor Center therapy before they start their summer program (which is less often and less formal) in two weeks. They had a year end video and popsicles for all the kids to try. I was really looking forward to this and was excited to see what Wesley would think about a popsicle. Well the last couple weeks he has been increasingly cranky and hasn't been able to do as much in therapy as he used to because he gets upset and inconsolably cries. Today was probably the worst he has done yet. In the 1 1/2 hours we were there, he laid next to a lightbox for about 5 minutes and swung outside for not even 5 minutes. The rest of the time was spent crying and fussing (didn't even get a chance to try the popsicle). It's so incredibly frustrating when we drive down there and he doesn't really get any therapy. His developmental progress has gotten slower and when he doesn't get his therapy, that trend will likely continue. There are four running theories for why he has gotten so cranky lately: his seizure medicine can cause developmental delays and fits of anger (we are starting trying to wean him off the meds), many "neuro-babies" get cranky for no known reason, he could be frustrated that his lack of motor skills makes exploring his world difficult, or he could be getting easily overstimulated. So... whatever the reason, Wesley is consistently inconsolably cranky and to top it off, won't nap during the day so he gets worse as the day progresses...
After Anchor Center today, Wesley had an eye exam. It went pretty well although the doctor said he has significant delays in his vision development. He also said Wes was making progress and his vision should continue to improve as he does therapy and his other skills develop (Yay!). At the end of the eye exam, they were trying to look in his eyes and he wasn't cooperating so they ended up pinning him down and prying his eye open while he screamed at the top of his lungs. I almost told them to stop, he was so upset. Looking back I wish I would have stood up for him and made them wait for him to calm down.
As we were driving home, I had a mini breakdown from the stress of this week and the coming week. As if caring for a sick child isn't hard enough, having to fight with insurance to get everything paid for makes everything that much more difficult. Then when your baby is miserable and you don't know how to help him, it becomes even more unbearable. I started crying as I was driving down the road (not the safest thing I know) and was praying telling God that this is all too much for me to handle. I didn't feel some mystical answer to my prayers but after letting out some tears, I felt slightly better.
Then I got what seemed at the time (and still kinda does) like a harsh answer to my prayers; my car broke down. Yep, right on the side of I-70 my car acted like it ran out of gas even though I had a full tank. I just burst into tears again. God's answer to my prayers of "this is too much for me to handle" is to add one more thing, really?? I still don't understand what it means but I don't feel like it's just coincidence. Surprisingly enough I don't feel angry about it, just confused. I guess I did survive which means I did "handle it" with God's help. Maybe the lesson is I have no idea what I can and cannot handle... I'm not sure that I want to experience any more of this lesson. Can't I just concede that God is all-knowing and all-powerful and stop having to learn these lessons the hard way? I'm tired learning everything the hard way and I'm tired of everything being hard. I know that we have been blessed immensely throughout this ordeal but right now the heartache seems to outweigh the blessings.
After 9 5-10 minute breaks on the side of the road I made it from Denver to the mechanic in Pine Junction and my mom picked me up and took me and Wes home. Then, to top it all off I got 3 letters in the mail from our old insurance company saying the supplies that they originally said they would pay for but then didn't pay for but then said that was a mistake and they will pay for them, they finally decided that they won't actually pay for it...
What a day.
Wes has his MRI in the morning... please pray that it goes well and shows lots and lots of healthy brain.
This morning was the last regular day of Anchor Center therapy before they start their summer program (which is less often and less formal) in two weeks. They had a year end video and popsicles for all the kids to try. I was really looking forward to this and was excited to see what Wesley would think about a popsicle. Well the last couple weeks he has been increasingly cranky and hasn't been able to do as much in therapy as he used to because he gets upset and inconsolably cries. Today was probably the worst he has done yet. In the 1 1/2 hours we were there, he laid next to a lightbox for about 5 minutes and swung outside for not even 5 minutes. The rest of the time was spent crying and fussing (didn't even get a chance to try the popsicle). It's so incredibly frustrating when we drive down there and he doesn't really get any therapy. His developmental progress has gotten slower and when he doesn't get his therapy, that trend will likely continue. There are four running theories for why he has gotten so cranky lately: his seizure medicine can cause developmental delays and fits of anger (we are starting trying to wean him off the meds), many "neuro-babies" get cranky for no known reason, he could be frustrated that his lack of motor skills makes exploring his world difficult, or he could be getting easily overstimulated. So... whatever the reason, Wesley is consistently inconsolably cranky and to top it off, won't nap during the day so he gets worse as the day progresses...
After Anchor Center today, Wesley had an eye exam. It went pretty well although the doctor said he has significant delays in his vision development. He also said Wes was making progress and his vision should continue to improve as he does therapy and his other skills develop (Yay!). At the end of the eye exam, they were trying to look in his eyes and he wasn't cooperating so they ended up pinning him down and prying his eye open while he screamed at the top of his lungs. I almost told them to stop, he was so upset. Looking back I wish I would have stood up for him and made them wait for him to calm down.
As we were driving home, I had a mini breakdown from the stress of this week and the coming week. As if caring for a sick child isn't hard enough, having to fight with insurance to get everything paid for makes everything that much more difficult. Then when your baby is miserable and you don't know how to help him, it becomes even more unbearable. I started crying as I was driving down the road (not the safest thing I know) and was praying telling God that this is all too much for me to handle. I didn't feel some mystical answer to my prayers but after letting out some tears, I felt slightly better.
Then I got what seemed at the time (and still kinda does) like a harsh answer to my prayers; my car broke down. Yep, right on the side of I-70 my car acted like it ran out of gas even though I had a full tank. I just burst into tears again. God's answer to my prayers of "this is too much for me to handle" is to add one more thing, really?? I still don't understand what it means but I don't feel like it's just coincidence. Surprisingly enough I don't feel angry about it, just confused. I guess I did survive which means I did "handle it" with God's help. Maybe the lesson is I have no idea what I can and cannot handle... I'm not sure that I want to experience any more of this lesson. Can't I just concede that God is all-knowing and all-powerful and stop having to learn these lessons the hard way? I'm tired learning everything the hard way and I'm tired of everything being hard. I know that we have been blessed immensely throughout this ordeal but right now the heartache seems to outweigh the blessings.
After 9 5-10 minute breaks on the side of the road I made it from Denver to the mechanic in Pine Junction and my mom picked me up and took me and Wes home. Then, to top it all off I got 3 letters in the mail from our old insurance company saying the supplies that they originally said they would pay for but then didn't pay for but then said that was a mistake and they will pay for them, they finally decided that they won't actually pay for it...
What a day.
Wes has his MRI in the morning... please pray that it goes well and shows lots and lots of healthy brain.
Megan,
ReplyDeleteI am so sorry that you have to go through all of this. I could say I know how difficult this is for you, but I don't. While we had difficulties with Jonathon and his CF, it pales in comparison to what you are going through.
I just wanted to let you know again, that you and Wesley are in my daily prayers, really! You two are the first people I pray for every day! I pray for Wesley to get stronger and I pray for you to stay strong. I am so thankful you have God on your side - can you imagine going through all this without Him??
Hang in there! I wish I was closer and could help you. The best I can do is pray. And pray I will! Every day!
Love,
Aunt Pam
Megan...I am so sorry you had such a hard day! Wish I was there to put Wesley to sleep for his nap for you :) Praying for a good MRI today and for strength and wisdom for you. This is a lot to handle without your hubby there, but God does know what He is allowing and He will see you through.
ReplyDeleteLove You!!
Grandma
oh, ugh! I'm so sorry, meg. Feel a hug from the other side of Bailey. K? I'm weeping now, too. I seriously don't know why God lets us run these gauntlets, but He does and I know He is still in control. We may never know the "answers" this side of Heaven and I've come to realize that's OK...just extremely hard. Love you!
ReplyDeleteJulie