The Friends I Didn’t Know I Needed
A couple of months back I picked up a copy of “Bloom: Finding Beauty in the Unexpected“
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.
Oh my gosh. Just…so good. Thank you for this and for everything and yes. I’m so happy for you, truly.
Our son struggles with a different cross to bear but I think I can understand just a bit how you must feel. We definitely need contact with others that share our burdens of love for our children. I’m so happy you found a place. As always, I enjoy your posts.
Debbie
I have yet to experience this kind of grief in my life (so I hope what I say won’t come out wrong), but I just want to tell you how much I appreciate this…and Kelle’s words…and all women who share honestly what it’s like to deal with such fear and pain. Looking inside, I know that *I* would be a mess, and feel and do and say things that were raw and ragged, so – even though it’s not happened yet – your honesty is in a sense giving me the courage to face whatever may be still to come. Thank you.
I can relate in that I’ve found that I really need the conversations I have with the parents in Daniel’s preschool class to know that I’m not alone. Everyone seems to be an expert on autism even though most people don’t have a kid with it. Probably the best person (other than the preschool parents) has been a woman in our parish who has a grandson with it. Her daughter (the child’s mother) is also a HELLP Syndrome mother and having watched her daughter deal with her son, she knows what to say when I come to Ladies’ Night Out wanting to strangle someone because they either told me it was my fault for vaccinating my son or suggested that I try the GAPS diet with him.
And OMG… I wish I had a nickel for every recommendation of “who [I] should talk to”. Usually, it’s someone who the referring person only tangentially knows and some of the time, it’s someone who doesn’t even have a kid with autism/developmental delays/prematurity/whatever. Frequently, I just want to say something like, “thanks but I think I can find people to talk to if I need them. Kthanksbye!”
Kelly, this really resonates with me as well. Not so much because I have similar life experiences, but because I have often put up similar walls of pride in my life. So often I’ve thought I was “the only _______” around. God is so good in that he never fails to provide me comfort, and often it is in the form of unexpected friendship. I’m really really happy that you have found some new friends that support you and empathize with you. God is so good, right?
This is beautiful, Kelly. Thank you for sharing it.
I’m reading Bloom to and I’m perplexed by the negative comments on goodreads and Amazon, too! I guess people struggle to understand a mother’s honest perspective when it comes to motherhood? I’m inspired by her story.
I can see how that book would be healing for you. I cried like you did and it was healing for me in a different way. (The story of her husband looking for the space heater? Wept like a newborn.)
My oldest son, Patrick, was deathly ill as a toddler and also has a genetic disease (with minimal complications) and until you walk a mile in those shoes, it’s tough to understand the raw feelings/emotions.
You have a voice that can help mothers. Good for you for using. God will use you.
Oh my gosh, I just love how you are opening up your heart like this. I want to give you a big HUG! Keep writing, I’m glued.
Love this. It has been so true for me as well. I couldn’t agree with this more, “they reinforce your normal.” So glad you have found that reinforcement, although I’m doubting you will ever really be normal, haha 😉 Love your writing, even when it isn’t funny.
That was beautiful. Totally brought tears to my eyes. Thanks you so much for sharing.
Amen. Three years ago we received a devastating rare diagnosis for my youngest son. But I cannot imagine going through it without the understanding that I get from the beautiful “strangers” I’ve met online. We’ve since met several of them in person and they are true friends, They not only offer practical advice and a sounding board for therapy and treatment options, but a comforting understanding of the emotional highs and lows of our journey toward accepting .
You’re totally right. Big moments in life like this require a grieving process and every person does that differently. There are so many different reactions and needs people have! I can’t empathize with your situation, but I can sympathize and pray 🙂
You’re not a saint or a superhero, but you are hilarious, kind and awesome!! And I’m leaving a comment so I can be your BFF. 🙂
my daughter, ruby, was diagnosed with sma at the beginning of february. I get what you’re saying. no one can prepare us for news like that and it is no ones place to judge, even if they have gone through it bc we all cope differently. I’ve had insensitive thoughts (& voiced them, at times), too. it is what it is. i manage to say positive mostly, but sometimes not so much. anyway, I’m rambling. just wanted to say I’m very glad you’ve found your people. 🙂 it’s made a HUGE difference for me, too.
Reading Kelle’s birth story on her blog was really powerful for me, too. At the time James was still in the NICU and so many horrible things were predicted for him – I could relate to her emotions and fears so much. There were so many times when I saw parents of kids with CP or severe mental delays and I wanted to ask them, “How did you do it? How do you do it?” but I was so afraid to hear the answer. In the end it was two friends of mine who each have kids with Downs syndrome who really helped. They understood all my grief and shame and didn’t look at me with sadness or compassion when I talked about James’ diagnosis. They just looked at me and listened.
I know things ended very differently for me and there is much I cannot relate to, but those first emotions I remember very well.
This is so true and honest, and lovely to hear. While my children do not have any disabilities, there is the idea that pervades society today that motherhood should be dressed up and the ugly emotions buried. But there are seasons to life – highs and lows – and sometimes we just need to hear from other moms who are in the same season we are in. Kids with similar ages, similar situations, similar outlooks to “reinforce our normal” indeed. Thanks for sharing this – it is really beautiful.
So I’m a Catholic mom of a kid with Down syndrome. I came across your blog a few months ago after it had been featured on Jennifer Fulwiler’s blog. And somehow I figured out that you have two kids with SMA (and I was a little excited, because OMG, fellow Catholic homeschooling mom who has kids with special needs!)…it wasn’t obvious or easy to figure out…almost like you were trying to hide it or something, or weren’t comfortable talking about it. And I wondered if you needed to make a step like this. We “special” parents (lol?) need each other. No one else understands. I have mixed feelings about Kelle Hampton for other reasons, but I am so so glad her book brought you to this place. When my son was born the first thing I thought of was Nella’s birth story and I knew it would all be okay. If nothing else she has done a great service for all parents of kids with special needs by letting us know it is okay to feel everything…even the dark stuff. I think we have to feel all that stuff and get past it so we can find joy.
If you get a chance to read all of Kelly’s blogs, you’ll see that she hasn’t tried to hide the fact that her sons have SMA at all. From what I know of Kelly, I think that she has dealt very well with the facts of her life as God has given it to her and chosen to live a normal life without constantly dwelling on the downside. Maybe that’s why it wasn’t so obvious to a first time reader. Blessings to both of you!
To everything there is a season – your needs are not going to be the same through all the journey of parenting your special (and other) children. It seems to me that you reached out when you were ready, and I’m glad it’s been a support for you, and that your experience will help others. I have so much respect for you for staying open and being honest with yourself!
Hi there I found your blog through Martin Family Moments and I wanted to comment on this post. My daughter is three years old and a few months ago was diagnosed with autism. She is currently nonverbal. Although it is not be same thing as SMA, we have been told we cannot homeschool her and to that we’ve said “shut it.” Seriously it’s nice to read a post where a mother is homeschooling her special needs child despite the naysayers. I look forward to reading more if your blog. You gave me pickup this morning as there have been many days of cursing God these past few months.
If you are on Facebook look for special needs homeschooling groups, there a few large ones with LOTS of members who homeschool kids with Autism. There are plenty of people doing it, so don’t listen to the naysayers.