Ok, seriously. No jokes.

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.

 

21 Comments

Filed under SMA

21 Responses to Ok, seriously. No jokes.

  1. Heather Shepard

    Thoughts and prayers for you all. I hope it goes completely smoothly. Hope you had a nice Mothers Day too!

  2. Heidi

    We will definitely be praying! I have a Fulton, too. I’ll ask him to keep your Fulton in his special prayers (more so on Thursday) and Teddy, too.

  3. Carrie

    Kelly, Thank you for your strength, your dedication, your selfless sacrifices, your unwavering commitment to your children, and your endless love of your husband and family. In the midst of your pain, exhaustion and spiritual struggles you set an example of love in action. Even without you realizing it ” faith” is being poured out from you daily. What a beautiful gift the people you come in contact with are receiving. i know I opened your gift of friendship a long time ago and it has continued to bring great joy to my life. i will continue to pray for Fulton and your family but I will also pray that on your lowest of low days you will see the strength others see in your daily. Much love my dear friend, Carrie. oh and because i can’t go all mushy on ya, up in the corner of your blog there is a add that they are currently enrolling for a depression study. If you decided to sign up I’m right there with ya babe :)

    • kmantoan

      Aw geez Carrie. You’ve got me tearing up and everything. Thanks for the prayers. I don’t think we should enroll in a depression study, we just need a spa weekend.

  4. We (The Millers) will be praying for your family and especially Fulton this week. The hand your family has been dealt certainly isn’t fair. And I think we are friends because you are real and can admit that. And I love your humor. I think it is a fantastic approach.

    • kmantoan

      Thanks Kellie. I think our no B.S. attitudes united us, long before our diets did. I hope to one day be able to reflect back on all this and realize I’ve gained the same level of strength and insight that you shared in your blog post today.

  5. Mary

    Dear Kelly,
    My daughter works at a pediatric nursing home for children with serious disabilities. I don’t know how you do it with all the work you do!
    God bless,
    Mary

  6. Andrea Casarow

    Dear Kelly,

    One of my best friends has a child with this disorder, and lost two as well. You are in my prayers. Fulton is in my prayers. Teddy is in my prayers. All of you.

    God bless you and keep you all.

  7. Sue Kresge

    Kelly,
    Fulton has been in my prayers but I’ll certainly step up on it. You remain in my prayers as well. Scripture assures us that “strength will come when we wait upon the Lord”. You are doing just that and I’m sure He will continue to give you strength.
    Hugs, Sue K.

  8. Heather

    Hi Kelly,

    You do not know me..I know Jill Trueland and stumbled across your blog one day. I have enjoyed reading your blog and find your humor awesome. You have a dry sense of humor I really appreciate. You seem to have such a great family and I think that if blogging helps you and gives others entertainment/enjoyment to ready..well that is a perfect combo! I truly hope your son’s surgery goes well and he is helped by the tubes. I am thinking of you all…:)

    • kmantoan

      Thanks Heather. I’m glad you enjoy the blog. It’s been a great outlet, and I’m happy that others can laugh along with me.

  9. Kelly,
    I will be praying for you especially on Thursday. Thank you for putting this in your blog because this is an important part of you. I really love your posts and always get a smile out of them, now I’ll get a smile and an uplift too to see that in the midst of worry and a hectic life humour and happiness are there waiting for us.
    I know a little of what you feel…I have our toddler’s third major heart surgery looming on the horizon…I’m not looking forward to it one bit. So Thursday it is then…you’re on my list.
    Jennifer xx
    (I had a look a while back at your beautiful family-you know what struck me? How happy they look. Just thought I’d tell you that.)

    • kmantoan

      Thanks Jennifer. It’s because of new friends like you that I felt the need to share about my family more than I have. Fulton’s condition affects practically every aspect of our lives. It felt dishonest not mentioning it except in passing.
      If you’re anticipating a major surgery for your child, than you understand all too well my anxiety. I’d like to think in time, as he undergoes more procedures, I won’t be such a basket-case, but I suppose it’s just part of being a mom.

  10. I’m a brand new follower (just found you last week), but I’ll be praying. (((hugs)))

  11. Hey Kelly, I just found your blog a few weeks ago from Conversion Diaries, and I am so glad I have! I am reading all your back-posts and laughing until I snort/cry. You have so many gifts and are for me such an example of how God works through people. I LOVE your attitude about wine please don’t change it before I can have some (I am 12 weeks preggo with our 4th). I grew up with a special needs sister, and even though my mom or you would give your right arm to remove their conditions, they do form big-hearted, open-minded siblings. Consider yourself on the prayer roster. Also, you have reminded me about the Angelus which I haven’t thought about since 8th grade, so thanks for that!

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