August is Spinal Muscular Atrophy Awareness Month… if you are new to our story- our blog documents our entire journey through the diagnosis and death of our son, Ezra… it starts here: https://ezradavid.wordpress.com/2012/10/10/our-world-has-officially-been-rocked/

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We have heard over and over again how surprised people were when Ezra died because he looked so healthy. There were very few days through Ezra’s life when he looked sick. For the most part, his eyes were bright, his cheeks were full and his smile was ever present. But holding Ezra, or watching him try to move… it was obvious that something was not right.

We have shared that SMA is the #1 genetic killer of children under the age of 2. If you have been following my blog, you are aware that 1 in 40 people are carriers of this disease. You may even have an understanding of the way SMA affects the body…  But all of that doesn’t illustrate exactly what it is like for a little baby- who is completely in awe of the world around him- to not be able to move.

Most newborns lack head control. Their bodies can be floppy and they need help burping, they spit up a lot, and can not roll from side to side. These skills develop over the first months of life. Parents often lament when their babies start rolling or crawling because the independence factor ramps up. The baby can get out of the safe zone the parent has put him in. He can pull himself up- or pull things down. Stairs, lamps, outlets… a once safe room becomes a danger zone.

For Ezra, this was never the case. For those of you who have had a baby, it is almost impossible to picture an 8 month old baby who has zero head control. Ezra could not even turn his head from side to side. Ethan and I would adjust his head constantly through the day (and night) so he could see different things, or to help with his breathing. Ezra’s eyes had a tremor to them- and he would roll them back in his head to refocus. The doctors assured us this did not interfere with his ability to see, but it was a constant reminder to us that the muscles in his eyes were losing strength. He had some use of his arms, especially from the elbow down. He had almost no use of his legs, and could barely move his feet.

It goes without saying that Ezra never sat, rolled over and tummy time was impossible. He had no core strength to lift his chest, let alone his head. So, Ezra spent most of his life laying on his sides and back.

We had a bean bag chair that was his special spot. We could adjust it to sit him up more at an angle, or lay him down. He also spent a lot of time in our arms, lying sideways.

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Like most SMA babies, breathing was a challenge for Ezra. Being sideways helped with his secretions- his lungs were not strong enough to clear his chest. His coughs were not productive and we would use a bulb syringe to suction out his mouth and throat. As the disease progressed, we used a suction machine to help clear out his lungs. He hated this, and we only did it when absolutely necessary.

Ezra was trapped in his body, but he did not know he was. He knew no other way. He didn’t lose use of his legs- it was just never there. We are trapped in a different way. We knew Ezra’s love and now we need to learn to live without it. I feel so trapped by my grief. It is claustrophobic and limiting. I find myself crying in restaurants with sweet, compassionate friends. I visit the cemetery at night, so I can let go without the groundskeepers hovering nearby. Life has lost so much luster for me. I feel happiness, but it’s always shadowed by sadness. I am traveling to a funeral today. One of my very closest friends lost her mom to cancer and I ache for her, because I know the rawness of what she is feeling. The empty sadness. The trap of the new reality- learning to live without someone who is so interwoven into your day and life that how on Earth does the world keep spinning without them here?

xo