Hi everyone. It's Rachel again. I'll be signing autographs just as soon as this post is published. Please send your favorite picture of me with a self-addressed envelope and I'll be sure to get it signed and mailed back to you. In all seriousness-how awesome is it that this blog has taken off the way it has? The audience is expanding and growing and I cannot believe how many states and even countries now are reading "Raising Redheads." I do believe that allows me the privilege of being somewhat famous now. So there.
In all seriousness, I've been telling Ramee for awhile now that I wanted to guest post and put some thoughts out there. I wanted to write again since my last one was roughly 9 months ago. I wrote about the "new Ramee" and tried introducing her to you, her readers and friends. I tried to encourage each of you(myself included) to not be afraid of this new Ramee, or her new life, ideas and things to say and I know alot of you took them to heart, and some of you steered away over time, maybe still scared or really busy. That's all ok. I just wanted to come back again and talk about some things that maybe Ramee would never say herself, but mostly they're things that God has impressed on my heart as of late to share with you readers, who I know are trying your best.
Looking back over those last 9 months I see that alot is different now. Mabel is no longer swaddled. Ramee no longer can maintain all of Mabel's seizures on the charts she was creating, and I am not blogging from her toy room. Instead I am blogging from my apartment. Someday I will share my OWN personal story of what led me here, but to be completely frank, I'm still carrying my new found friend, Shame with me. Ya know how Ramee has a friend called sadness? Mine is shame. Embarrassment. Disappointment. Failure. --All of those were friends I did not ask to make, someone else made them my friends and that's the story I will someday tell but in the meantime, I am blogging from my apartment which means that I no longer wake up in the madness of Ramee's everyday life; I used to though. And that's where I was blogging from 9 months ago.
Mabel for the most part has stayed the same besides not being swaddled anymore-literally. She still isn't sitting, walking, crawling, rolling, looking directly at anything, or having a seizure free day. Mabel has really been consistent. Being consistent is really important-whether in school or in work, in prayer or in parenting. To hang in there and maintain what you've got going the best you know how! In the beginning of anything, it's always easy. Always! You have a new found drive, a passion ignited! You have found a cause or a resolution that you are proud to proclaim or to be a part of. At the end, it's always easy too. You have crossed the finish line and you have achieved your goal. You ran the race or you aced the test. It's the middle--that'll get you every time. The middle is really uncomfortable. You feel every ache and pain of running that race, your ankles are bowing and your forehead is drenched. At this point it'd just be easier to bow out-gracefully or not. You are spent and your energy is depleted. I feel like this is relevant now more than ever in Ramee's life. Our beginning took root 8 years ago and there is no end in sight, but that darned middle-it's not easy. I come to you from the depths of the middle of my friendship with Ramee.
I must first say that I am hoping our friendship is not intimidating. We were not just birthed friends out of trials in our lives this past year. We have always talked everyday. I have lived with her and she has lived with me. I have stayed in her grandpa's basement catching mice, and her sister has slept on an air mattress in my living room. I say all of that not to toot the friendship horn, but to just say that we have always been this close-Mabel alone has not spurred this on. Don't ever let the idea of ME "always being around" make you feel like you can't be-I don't EVER want that to be felt by anyone. Maybe none of you feel that way and it's all in my head, which is also a great possibility HAHA.
But here I am in "the middle" of my relationship with her and it is wonderful and I would never want to be anywhere else than wherever she needs me-but it's not always easy here in the middle. It takes effort and it takes energy to maintain any relationship, especially one that is wrapped tightly around a new reality and a mysterious child. My energy is depleted from my own everyday chaos, my own emotions and circumstances, let alone trying to be of any kind of encouragement. But I am trying my best not to fizzle out and leave her stranded. To be frank, I force myself on her. There, I said it. It's true. I barge in in the morning and I leave late at night. I stay for dinner and sometimes I bring lunch. Most days she lets me in, but I think there might be some days she holds back and that's alright too. I know that consistency means probably the most right now to Ramee. Whether she answers texts or calls you back..don't be put off. If she doesn't accept your dinner invite--still go out of your way to ask. It means alot to her but just know that there are alot of hard days and some really good ones thrown in there too. Bare in mind that a day out will require alot. She will either have to tote 2 children with her or arrange for them to be watched. Plus Mabel. and her meds. and her tube supplies, and Mabel will eventually get over stimulated which will result in having to leave wherever you are. So maybe just take her a Dr Pepper and sit and talk in her orange kitchen.
My Harper girl(or Harp, as we like to call her) sees Mabel everyday and I know she knows something is definitely different. Just tonight at dinner Harper was waving to a little girl at the next table over and tears came as I imagined that little girl would be Mabel if she could actually sit at the table, or eat for that matter...but she can't and so Harper says "tube" when Ramee is giving her her medicine in the gtube and Harper worries about where Mabel is. Harper pushes Mabel upright when she starts to fall. She yells "NO Mabelllllllll" at her when she starts her night cry. What I love most about their friendship is that Harper expects nothing from Mabel, she knows Mabel doesn't have much to give back to her-she too has just learned to force herself upon her. Here's a toy Mabel, and she shoves it in front of her. Sit up Mabel, and she pushes her up. She has made it a point to, whether Mabel is "special" or not, to still maintain a normalcy with her, she just forces herself upon her as if nothing were going on with her.
I wish we could force normalcy upon Ramee as well. Tell her how your kids are doing at school. Invite her to your daughters dance recital. She might not come, but do it anyway. She might not have alot to give back, but she still wants to be involved, I know that. I speak from experience in knowing that the feeling of needing to "tread lightly" about your "normal" child is there. I get that. Harper is there every single day and I can assure you that for the most part I am sensitive to certain things, and tuned into alot, but I really am free in talking about what Harper's doing, her everyday stuff, her milestones, etc. It's okay because that IS my life. Harper did come down the stairs on Christmas morning and she did go sledding today. My life is not any less important simply because it's on a different path, and neither is anyone else's. I want Ramee to stay with me though. I want her to stay tapped into who she still is. She IS Harper's Aunt Ramee! She was at some point your child's photographer or pilates instructor. She still is a party planner and a woman. For Christmas I got Ramee a new cookbook binder to replace her old one filled with her recipes. I wanted her to remember the Ramee who loves food and cooking for her family. I don't want her to lose sight of who she is when it would be so easy to just immerse yourself into the new and say goodbye completely to the old. So... remind her of who she is. I know some of you have some really embarrassing high school stories and pictures so by all means, let's plan a day to just get to know that Ramee. haha. Sorry Rame, I never got to meet her so Im interested ;)
Even as I type this I am leary of my words, but I'm going to post it anyway and pray I'm using the right "terminology." I got her a card this past week and on the front it said "This too shall pass, Maybe like a kidney stone-painful and slow but it will pass." It was meant to be funny because when I first came here I developed a .5 mm kidney stone that I had to be put to sleep for(true story) to have it BLASTED out of me. I also aspirated and had to be intubated but whatever, that's besides the point. What Im saying is.. I gave her that card to just encourage her that her "sad day" would pass, but then as I left her house I immediately thought-"Great Rache, you just gave her a card that said it would "pass" -Mabel is her child forever-this is NOT going to pass-UGH!" I say all of this to let you know that I too am kind of nervous about what I say or hesitant. I retract words and say alot of "well.. you know what I mean!" I usually just say it though. I love her and she loves me and I know that SHE knows at the end of the day I would never say anything to intentionally hurt her. Ramee doesn't need, nor does she want, friends or family who are living in bondage of what they may say wrong. You can be sensitive, but please don't be silent. Again, I know firsthand how sad the silence is in the dead of night when no one is calling, the texts have stopped coming, and there are no cards in the mail. It's deafening really.
I believe more than anything that Mabel deserves to be surrounded by people that adore her. You can be baffled by her, intimidated by her, or even unacquainted with her-but I think she should be surrounded by people who love her tirelessly. She deserves friends, even if they are walking, talking, in therapy too, or jumping in mud puddles-these are the people who will one day be her age in school, in society, in the workforce and I believe that we have a responsibility to teach our children to help kids like Mabel-they will inevitably be helping to raise her. I was just telling Ramee today how tight knit this town is. It is the picturesque town for making memories-a sledding hill, a homecoming parade, football games after you've long graduated, etc. If this town is to remain as close as it is now, and I believe it will, then we should be tuned into this Mabel Audrine and made aware of her life here with us. As a mom especially, most of us know how important and how fun it is to see our children socially interact and develop these childhood friendships-they're the foundation for alot of memories. Whether those memories will appear "normal" is besides the point, they remain memories nonetheless. My heart breaks for Ramee as a mother because I know the desire I have inside of my own self to watch Harper talk to other kids or look on in amazement as she shares a toy. These things are near and dear to a mommy's heart. I don't want them to ever be stolen from Mabel.
Getting the chance to step in and blog every now and again about what it feels like to be here, where I am -really close, but still not close enough to truly truly relate. I don't like that word relate when it comes to special needs parents. I hate it actually. I feel like if we all waited until we could "relate" to someone in order to be there, we would all be doomed. The fact is, you don't have to relate in order to care. I am dipping in and out of both worlds , the inside where I know so much and feel so much, but the outside where I am attempting to be a voice for those of us, family included, who don't know what to do or how to even be present again for this family. I would encourage you to just put yourself out there and do it. Whether it feels odd or awkward or embarrassing or really fluid-just be available to them. Not only to Ramee, but Daniel as well. Some of your husbands or brothers simply reaching out to Daniel could make the most profound difference. Women tend to rally around one another and form a bond, men are usually more hesitant to put themselves out there, but there is no reason that men cannot step up and root for this special needs Dad, who is also navigating new waters.
Coming together is a beginning. Keeping together is progress. Working together is success. ~Henry Ford
I love the above quote because I think it speaks so boldly about coming together, staying in it together, and making it to the end together. Join in on the race- the race for an answer, the race for friendship, the race for joy, the race for peace, the race to God's will, the race for more laughter, the race for understanding. If you're like me though, the idea of racing and Ramee put together never end in my favor-we all know her idea of a leisurely walk is never leisurely ;)
Love you Rame. Trying my best to be your voice as you use yours for a greater purpose.