Annnnnd Im sobbing. Thank you to one of my new, VERY dear SCN8A momma friends for sharing this wonderfully touching blog post. My friend has been going through a much harder time than I in the very recent past as she and her baby are currently walking a road that looks eerily like one weve walked before them. And during Adelines journey down this dark path, came another dear SCN8A friend who had traveled down the paths before us who was there to light the way and see us through. Its amazing just how much I read these words convinced that I must have written them myself. We are so, SO fortunate to have such a close and supportive SCN8A family. The storm is a perfect metaphor... The fears never die, the waves never cease, they become less intense; the storms simply move passed while you keep sailing in the eye on a choppy sea... Rocking. Swaying. Hoping that these bumps are as bad as it gets... Praying to stay out of the storms path. I am lifting so many in prayer tonight that you will all soon reach the eye of your endless storm... #scn8aStrong (Copying and pasting the blog entry for those the link may not work for) How I Navigate the Stormy Waters of My Daughters Diagnosis Though my feet are firmly planted on desert soil, my soul is lost at sea. Sometimes the ocean of my daughter’s diagnosis is calm. I find myself floating just at the surface, with every newly acquired word or skill she’s mastered like a ray of sunshine on my face. Her accomplishments, big and small, feel like ripples of joy surrounding me. She has this incredible joyful nature. She’s almost always happy, and she spreads her happiness around to everyone she comes in contact with. It’s beautiful to see how she lights up the world around her. I bask in her sunny disposition, but then out of nowhere I begin to drown again. I never really know the cause of the storms. Sometimes it’s just seeing the gap grow between her and her similarly aged friends. Sometimes it’s a phone call from a specialist, sometimes it’s making a phone call to a specialist. Sometimes it’s nothing. Sometimes the waves just suddenly appear, the sky turns black, and I fall below the surface again. My lungs fill with the icy waters of grief, and I can’t breathe as the weight of my daughter’s condition crushes me. I plummet toward the bottom. It wasn’t like that at first. Her diagnosis came in waves, and I was just getting my feet wet when the real diagnosis came. My daughter was first diagnosed with “delays,” but that didn’t seem too bad. We just need to do some speech therapy and we’ll get back on track. We’ll get her caught up. We can do this! She doesn’t have too far to go. After her MRI, we learned she has a structural brain abnormality, coordination delays, speech delays, and she will probably have epilepsy. It’s OK. We’ve got this. Her neurologist impressed upon me the importance of early intervention. Thankfully, she’s neurologically functional, so with enough work and intervention, she has a chance for a good life — maybe even a “normal” life. I stood on the shore and saw a beacon of hope far out in the distance. I made my checklist of things to do to get her to the other side of her condition, the side where we can hold on to the notion of the child we thought we had. I dove in headfirst and swam hard and fast, accomplishing everything that needed to be done for her. Therapists, check. Specialists, check. Keep swimming. Evaluations, check. Keep going. Almost there. Follow-ups check. You’re done! But I had not arrived. I didn’t even realize I’d been swept out to the middle of the ocean, and I was exhausted. Spent. I cannot go any further. Her therapies are like anchors in my week. 9 a.m. Wednesday occupational therapy, 10 a.m Wednesday speech therapy, 12 p.m. Thursday physical therapy, 9 a.m. Saturday Hippotherapy. 7:45-10:15 Monday, Tuesday, Thursday, Friday special needs preschool. Every other moment is spent being tossed around, unsure of which way I’m heading. I love watching her work and make progress. A few months ago she couldn’t ride a bike; now she can. Last week she identified a few letters in her name. This week, she sat down and did everything her therapists asked, and she kept her attention on their activities the whole time. It’s so exciting to see her overcome her challenges. I feel the sun on my face; I see hope. The waters are calm. and everything is going to be OK. My search and rescue party is small. I keep my circle tight. I hear all the time how, “You’re handling everything so well.” And, “I don’t know how you do it.” And, “You’re superwoman!” but most people have no idea that I’m drowning, and I have to take refuge under my covers every afternoon when my daughter naps because I just need a reprieve from the grief and sadness that swirls around me. They don’t know that I’m trying to find the right antidepressant so I can be functional again. They only know my brave face. I’ve become so skilled at navigating questions about my daughter. It’s rehearse, recite, repeat. The common question of, “How is your daughter doing?” is easy. List the accomplishments, list her schedule, list her diagnosis and finish with “She’s doing great!” The question that I cannot answer is, “How are you doing?” Uh oh. We’re taking on water. Adjust the sails, change the subject, get the hell out of there because the storms are coming in again. And I thought the forecast was sunny. I get pulled under again, start to sink. I’m not sure if it’s my asthma or my anxiety, but my lungs aren’t working and I can’t breathe. Luckily, there’s always a loving outstretched hand that plunges into the water to pull me back to the surface. A precious friend who knows I’m drowning or my husband sends a text at just the right time. They lift me up when I need it most so I can float on a little longer. They know the unpredictable and tumultuous nature of my emotions. They know when I need to have fun, when I need to cry, when I need to laugh, when I need to run and they know all of those things could happen in the span of moments. They part the clouds, and I’m back in the calm center of the storm where I can find the sun again, enjoy my daughter and focus on the things that need to be done for her. I can barely make out the shore, but it’s there. There’s hope out there for her, for us. My deepest desire is that this journey won’t last forever. It seems that this ocean filled with my own tears is vast and deep, and every time I think I’m getting better and accepting of our new normal, I get pulled further out to sea. I hope someday soon I’ll make landfall and stay out of the deep forever. I’ll visit from time to time, but never need to cross it again. 💜 themighty/2014/12/how-i-navigate-the-stormy-waters-of-my-daughters-diagnosis/
Posted on: Sat, 10 Jan 2015 05:40:32 +0000
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