A couple of months back I picked up a copy of “Bloom: Finding Beauty in the Unexpected“ by Kelle Hampton at my local library. Some of my favorite bloggers had suggested it and I love Kelle’s Instagram feed so I thought I’d give it a try. Ten minutes later, I’m in the children’s reading section, squatting on a kiddie chair with tears streaming down my cheeks.
Rewind four years ago. I can’t tell you how sick I was of hearing people ask/tell me, “Have you found a support group or other parents to talk to? I know someone I can connect you with. Her child died a few years ago from Spinal Muscular Atrophy.” No, I have a great network of friends and family. I don’t need a support group and I most certainly don’t need to talk to someone whose child died. (Insert strained smile and gritted teeth here.) I tried attending an MDA event in the fall of 2009 and left early because I felt horribly out-of-place, and I’m sure I said a million insensitive things in trying to make small talk.
I was quite sure I didn’t need a special group of people to talk to. People who would certainly force me to face how awful this disease was and then require me to discuss it in detail. No. freaking. way. And that was my unshakeable mindset until that afternoon in the library.
I read quite a bit, but few books leave more than a faint impression on my grey matter. I didn’t anticipate “Bloom” creating the emotional upheaval it ultimately did. When Kelle writes about her realization that Nella had Down Syndrome and their first night in the hospital I started having flashbacks of the night in the NICU when I received Teddy’s diagnosis. And I felt that pain in my heart right there in the library just as I felt it in the NICU and as Kelle felt it in the birth suite. When she wrote about her thoughts way into the future, of Nella and Lainey not being the sisters she imagined I remembered telling a friend through tears how Fulton would never be an altar boy or wrestle with Byron. I cried in the library over the futures our children would be denied and the unfairness of it all. And it felt good to cry and to read about Kelle’s own tears because I understood it oh, so well and I could sympathize with her in ways few other mothers could.
I read the book whenever I could be alone. My own tortuous memories would intermix with Kelle’s stories. Her first support group meeting and my own failed first attempt. The relationship between her husband and herself, balancing one another through the highs and lows mirrored the way Tony and I try to uplift each other. The importance of friends and family. The need to write and ultimately become stronger and find the joy in life.
I had not cried about the boys like that in a very long time and I didn’t know how much I needed too.
I went to Good Reads and surveyed the reviews of Bloom. Some were glowing, others mixed, but the ones that stuck with me were the mean, and unflattering ones. Several women wrote they couldn’t fathom Kelle’s reaction at discovering Nella’s diagnosis. They were criticizing her thoughts and feelings at that very difficult time which Kelle wrote about bluntly. Of course, these critics did not have disabled children, and for some, no children at all. But I do, and it was then the light bulb clicked on.
I related to Kelle because I had those same dark thoughts and moments that offended those readers. I found someone who understood a part of what I’d been through and validated my own experience, although not exactly the same, by her words. I’d really convinced myself that no one understood what went on in my head, yet there were sentences I could’ve written myself, printed neatly on the page.
It was then I realized I needed to find other people who could understand me at that dark moment in my life. The moment the doctor put her hand on my shoulder in the NICU and looked at me with sad eyes and I knew before a word escaped her lips what she wanted to tell me. I needed to find people who understood why I quickly placed Teddy in his incubator and ran sobbing from the ward. I needed to find people who understood why I was so damn angry putting the crib together later that week and why I stopped praying, except to curse God, for at least a month. Those last few sentences make me sound like the world’s worst mother, except to another mother of a child with SMA.
It took a few weeks of online networking but finally this past week I connected with several other moms. A few who have two sons with SMA. Plus others who are also homeschooling. They’re struggling to modify their homes and vehicles and deal with colds and when I have a question or want to rant on and on or stalk through their photo albums they understand. Absolutely and completely.
It’s been an epiphany and it inspired me to add the SMA page up top and share more of my story. This still isn’t going to be a dedicated SMA blog but now I see the benefit to putting it out there a bit more. Maybe your child doesn’t have SMA but another disability or tragedy that knocked the wind out of you. I get it. I understand that raw emotion, the anger and the pain and I won’t judge you for it.
Eventually you reach a new normal. But it’s the type of normal few people understand. They mistake you for a superhero or saint or something; titles no one is comfortable carrying. And that is why finding friends who can intimately relate to your struggles are so important; they reinforce your normal.
So now I’m reaching way outside my comfort zone, chatting with total strangers across the country and enjoying it more than I ever imagined. I thought learning to laugh again was the key to my recovery, but discovering these new friends has helped me come full circle from my darkest times only a few years ago. I thought I didn’t need a support group, but thankfully, I learned I was wrong.