Ok, seriously. No jokes.SMA Posts
Note: This is a serious, laying my soul bare kind of post. If you want to read something funny, check back later this week.
The toughest thing about writing a humor blog is that life tends to have periods when nothing seems humorous. I’ve been struggling with lots of un-funny stuff for weeks now, and trying to gain the upper hand. I use this blog for my own benefit, to document the humor in my life, and hopefully in the process, entertain others. I usually don’t feel the need to rehash the hardest parts of my day. I live them; once is enough.
If you know me, you know the serious part of my life. If you’re new, let me fill you in. My sons Fulton and Teddy are both diagnosed with a serious neuromuscular disorder known as Spinal Muscular Atrophy. It’s why in photos, you see my 3 1/2-year-old Fulton in a power wheelchair and body brace. My youngest son Teddy, now 19 months, is not as severely affected, however, he also cannot walk and will probably need a wheelchair within the next year or so. There is absolutely nothing funny about SMA. It is horrible and has no proven treatment or cure. It is slowly robbing my boys of their voluntary muscle movement.
That’s just a quick summary. As you can imagine, my daily life is greatly affected by the care of two handicap children; Fulton’s care especially. I finally admitted I needed help this fall, and in February I started getting nursing care five days a week to help with Fulton. For now Teddy does not require any additional care over that of a normal baby. It is only the added inconvenience of scheduling one more set of physical therapy and doctors’ appointments.
I don’t really know how I get through each day. With God’s help, I just do. I started this blog to help record all the funny moments in our day because I need to be reminded myself sometimes. It would be very easy for me to become overwhelmed with sadness, hopelessness and anger. There was a period following the diagnosis of Fulton that I didn’t think I could find joy in life again, ever. How could I so much as smile, while he was asked to endure such an existence? After a period of shock, I was depressed for several months. It was only after reading this book from Father Benedict Groeschel that I started to feel better.
Once I learned my youngest son would also have SMA I sank into a spiritual depression that I think I am still recovering from. It’s why I’m not writing a blog containing the deep insight I’ve gleaned from parenting children with physical disabilities or how I’ve reached greater spiritual depths because of our situation. I’m not there yet. I’m still struggling.
As it gradually became clear that Teddy’s condition was not as severe as Fulton’s, I was able to start allowing myself to hope again. Yes, things would never be simple, but they could be normal.
Normal is defined as ‘The usual, average or typical state or condition.” Thankfully, we have a typical day like most of you. I just also have a nurse in my house and maybe a therapist. Instead of running to activities in the afternoon, I’m driving to another therapy visit. There aren’t many toys in the downstairs bedroom because we have wall to wall medical equipment, but there’s Lego displays on the dresser too. The average day includes school, activities and medical treatments. It’s no longer weird to us. My kids don’t understand why other kids stare at Fulton or why some families are extra nice to us. Five kids with one in a wheelchair? No biggie around here.
And finally, due to the in home nursing care and Teddy finally sleeping through the night, I was able to see the humor in our everyday life again because I wasn’t so overwhelmed with worry, or exhaustion or frustration. There is joy and laughter; we have not been beaten. So I started sharing all these funny observations here on my blog and I found joy in typing them, re-reading them, sharing and receiving feedback on them. It reaffirms for me that yes, I am blessed! I pray daily for a cure, medical or miraculous, but if it never comes, I can still be happy.
Maybe you’re wondering why I decided to share all this now. Well, Fulton has surgery scheduled for this Thursday the 17th. It’s been rescheduled twice due to illness. He’s getting a feeding tube placed directly in his stomach to help supplement him. It’s just really hard for him to eat and drink enough to stay nourished and hydrated. I’ve been assured it’s a simple procedure, but he’ll be in the hospital for three days due to his underlying medical condition. As his mother, I’m obviously terrified…I’ll admit it. I always imagine worst case scenarios.
For weeks this has been hanging over me, the hassle of trying to reach anyone to reschedule. The additional doctor visits due to illness. Insurance “issues.” Everything has been completely out of my control and while I keep saying to myself, God’s in control, God’s in control, I’m still a spaz. (And it doesn’t help that our flake of a contractor just quit mid-job leaving our house in disarray.)
So I’m pouring my heart out and asking for prayers. I think I’d be dead now if it wasn’t for all the people who pray for me and our family. I’m really so spiritually inadequate to tackle everything on my own. I know Fulton will come through this and we’ll get back to normal. Our renovation work will get completed and everything will proceed as usual. I just need a pep talk or some cheerleaders, now that we’re down to the wire.
In conclusion, I want to thank you, and everyone who’s been reading my blog these last few months. I know I’m not the funniest site on the block, but knowing a few people are reading and getting enjoyment from my posts is good medicine. Thanks again; I will remember you all in my prayers as well.
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