Special Needs
Although this isn’t a blog about Spinal Muscular Atrophy and special needs parenting per se, SMA affects every aspect of our lives. I created this page to share Fulton’s and Teddy’s back stories, links to my most recent posts about SMA and special needs parenting, (visible under the SMA Category ), and links to SMA resources.
I have also recently started an apostolate for Catholic parents of special needs children. Please visit this new site, Accepting the Gift, for resources and information to support you in your unique vocation!
For a quick background on this neuromuscular disease I recommend starting with my post Seven Things You Should Know About SMA.
These are some of my top posts about SMA and special needs parenting.
Tiny Tim and the Blind Boy: Why the Types of Stories We Tell About Disabled People Matter
My Moral Dilemna as a Catholic SMA Mom
Seven People Sticking it to SMA
I Am Not Exceptional, And So Can You
Five Ways Being a Special Needs Mom Has Made Me A Better Person – guest post at Svellerella
I’m a Special Needs Mom and This is How I Pray
The Sadness We Bring to a Diagnosis Should Not Become Our Child’s
How Can We Keep Our Faith When Bad Things Happen to Our Children?
What to Do When Your Child Won’t Stop Staring at a Person In a Wheelchair
Below, I have linked to posts I wrote back in 2009, originally via Facebook notes, when we were first struggling to find out what was wrong with Fulton. I’ve also included the difficult note I emailed to friends and family that announced the heartbreaking news of Teddy’s diagnosis. Finally, you can read some posts on my old blog where I shared my thoughts. Warning; none of these are especially cheerful. It took awhile for me to arrive at where I am today. I’ve transformed from a woman who in June 2009 never thought she would smile again, to the writer of a humor blog. With God, all things are indeed possible. If you are struggling, never give up hope.
Adjustment; The First Few Months
One Year After the Diagnosis– reflection from my old blog. Mentions Tony’s layoff, his parents moving in with us, my pregnancy with Teddy; it was a stressful time.
Teddy’s Diagnosis 10/22/10 – I’m happy to say, the doctor’s predictions were wrong and Teddy has a milder case of SMA than Fulton. There were no updates on Teddy for over a year because for one year, he was a perfectly normal baby. The doctors still can not explain the great discrepancy in Fulton’s and Teddy’s conditions.
A post on my old blog about my spiritual struggles immediately following Teddy’s diagnosis.
Update on Fulton and Teddy 2/23/12
We have a great devotion to Archbishop Fulton J. Sheen, who was made Venerable on Fulton’s 4th birthday, June 28, 2008. We pray for a miracle through his intercession and eagerly anticipate seeing him declared a saint in our lifetime.
We also seek the prayers of Bl. Herman the Cripple. You can read his inspiring story here. He was obviously given his title in a less PC era.
For more more information I recommend these websites:
Muscular Dystrophy Association
If you are the parent of an child with SMA, or other serious medical condition, feel free to email me with any questions or just to vent. I understand! I’ve been there! It would be my pleasure to correspond with you.
Thank you for all this. I pray you will be blessed by peace and comfort from the One who grants it. One thing, the link to “Update 2/23/12” takes you to “Arriving at a Diagnosis 6/09”
Thank you for pointing this out. All the links should be working correctly now.
Thank you for sharing how this has affected the boys and the whole family. What a blessing Fulton is with his attitude and smiles! What grace God has bestowed on you and your family!
Fulton and my Lizzy and I are all birthday buddies! June 28th- the day of awesome humans.
I talk have a child with SMA…ayden trammell type 1 and we are homeschooling this year….I need help!!!! Please contact me
Hi there. I have really enjoyed reading your story. I have a four year old son who was diagnosed with SMA type 3 last year. He is doing really well which continues to make us smile. We also have a 2 year old son, who at this stage seems unaffected by SMA. I am now also 15 weeks pregnant with our third child, who is also a boy, and with much sadness he has been diagnosed with SMA also. We are unsure to what extent he will be affected but can only hope that he remains like our 4 year old or better. I find hope in your words and am amazed by your strength. Thank you 🙂
Just now seeing this…thank you for sharing. I will pray for you and your family, what an inspiration you are! 🙂