SMA
Although this isn’t a blog about Spinal Muscular Atrophy 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, (visible under the SMA Category ), and links to SMA resources.
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.
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! 🙂