Parenting a Child with SMA Means...

• That 911 is on speed dial and they are called when your child swallows too much mucus because his body to too weak to cough it up.




• That you panic when your child's pulse ox reads oxygen: 78 and pulse: 175.




• That you wake 3-4 times per night to re-position your child so he sleeps comfortably.




• That you don't have regular date nights with your husband because you are fearful of leaving your son with anyone-even family who you love and trust.




• That you don't know if you can ever have the big family your dreamed of, because you would never want to pass this disease on to any other children.




• That you spend $300+ per month on medical expenses.




• That time is the enemy as you watch your child grow weaker and weaker with each passing month.




• That instead of clothes and shoes, your son's closet is filled with medical supplies: suction catheters, ambu bags, a stander, filters, tubing, nodes, and wires.




• That your child has to wear leg, wrist, and chest braces everyday because his body has become so contracted and his spine so curved, that these things can only maintain what has already happened.




• That the simple act of brushing your son's teeth, requires you to suction out his mouth so that he won't accidentally swallow any toothpaste, causing him to choke or vomit.




• That leaving the house with your child requires that you bring a pulse/ox, suction, ambu bag (or oxygen), and cough assist with you, just in case.




• That when you put your child down for a nap, he must have his pulse/ox, feeding tube, and bi-pap mask on before he can sleep.




• That your child has a tiny hole in his belly where his food goes in because he has been denied the pleasure of eating by mouth since he now chokes on his food.




• That you worry how this disease with affect your SMA-free child as she gets older.




• That your child can no longer play without the use of slings to position his arms to be able to touch his toys.




• That doctor's visits become your child's most frequent outing and his cries as you load him in the car.




• That you are an advocate for your son, fighting with doctors and insurance companies to get him what he needs.




• That you have to endure stares and questions everywhere you go from strangers unsure what to make of your child.




• That the cold & flu months mean that you rarely ever leave your house and not many visitors are allowed inside.

It also means that you will do absolutely anything to give your child the best quality of life and that you are blessed with the most handsome, loving, precious child and parenting him, while difficult, is the most important thing you will ever do.