a letter from a friend

If you were to peer into this toy room window I'm sitting next to right now, you would see a stuffed tiger in the chair next to me, puzzle pieces scattered, naked babydolls, and even a measuring cup. There is laundry stacked on the dining room table and there are toothbrushes laying out on bathroom sinks. My surroundings shout of normal. Your first impression of this house, this family, and these children would be normal. Things however, are not normal. What is normal, anyway? Moving on....



It is so easy to be on the outside and to just merely peer in every now and again. Leave when you feel uncomfortable, and come back on a better, more sunshiney day. It's effortless to bite your tongue and get into your car and spill your questions to the passenger next to you about what you just observed. It is hard, however, gut-wrenching hard, to be an active participant in the un-normal activity behind the toy room window.




Ramee has been loved by me since as long as I can remember, honestly! My heart breaks, bleeds, celebrates, and beats with hers. The connection, intense. The love, unmatched. I have known her to be just Ramee-spunky and funky jumping rope and exercising outside of her apartment. I have watched her turn into the Ramee who has kissed and departed from her husband as he leaves to place his boots on a soil that is not shared by her. My favorite Ramee, of course, was the pregnant-with-the-fieriest-redhead-you-know Ramee. She has been my confidence booster Ramee, and my "I wouldn't do that" Ramee. I know she was challenged the most in her mothering-to-boy Ramee role. And then there was the Ramee who got pregnant with a Mabel girl. Suddenly, my best friend was the mother to 3 beautiful babies who had my heart from a distance all in their very own special and unique way.



So as you can see, I have known Ramee to be a multitude of different things. Above all, and most steadily she has been God fearing, and knee-dwelling in prayer. You see however, there is a Ramee I did not know, nor did I ever want to know. This is Ramee, the mother of a special needs daughter.




I have never known this woman or mother. I am just meeting her and getting to know her. Do you know her? Let me introduce you. Oh, she is graceful and gentle in her spirit. She is on fire with determination and passion to advocate. She is mostly weak at nighttime, and only asks for help as of lately. Sometimes defensive. She plasters on a brave face when someone asks the inevitable "questions about Mabel" --and she becomes someone again, who I have never known. She is completely outside of herself, and I think that's okay. Her normal is shaken and somedays her faith gets rocked a little too. She is quick, oh my she is quick, to reign herself back in though. The normal that once was for this family, is no longer.



I wanted to write on this blog not as merely a bystander, but someone who has felt it, dwelt it, and lived in this process with Mabel as well. I did not birth her, and I do not father her, but I have seen and felt all too closely the trials and tribulations this has brought forth. It has been hard, if I'm being honest. What do you say when your best girlfriend is holding her third-born precious child, and she bluntly asks you,



"Do you think she's seeing Rache?"



I told her no.



"Do you think something's mentally wrong?"




I tell her possibly.




With each answer I know her gut is turning along with mine, almost in a rythmic dance that we as mothers can only feel. How do I be her friend and be sensitive but yet tell her the truth so she doesn't live in the "well no one else is mentioning anything, so it must all be okay. "Oh God, help me be a friend to this new Ramee.



God?.... are you there God? She's hurting. This isn't how it was supposed to be.




Along with this new Ramee, is a new Rachel. A new friend. A new aunt.




I have become a master communicator in silent expressions passed across a room. My eyes quickly find hers whenever there's another baby in the room who can hold their own bottle or make eye contact with their mommy. "Did you see her holding her head up?" We mentally prepare ourselves before the majority of our "big outtings." Will there be other children? How old are they compared to Mabel? Will they ask about her?




Somedays it feels like we live in our own village where this becomes normal. Mabel in her swaddle at 9 months old. Mabel not really enjoying toys. Mabel taking the red medicine above the sink. This is normal...to us. To those who wake up in, bathe in it, sleep in it, fel terrified in it, and find peace in its familiarity. To those of you outside, just peering in through the window though I know it cannot feel normal. It doesn't look normal in the slightest. I feel for you as you try to be a friend, a soft place, and a shoulder to lean on for Ramee.




Please know she is vulnerable and laid open. She is changed and has been rocked by the unspeakable. Her days are filled with labels and drs and therapy and charts. Seizure charts.




She is afraid even though she won't tell you that. She has questioned alot of what she knows to be true, and she feels guilty alot. She is unsure and she is heartbroken. She is a mom who only wants her children healthy and well. In the meantime, life is still swirling on around her. Kids still need fed, and the other two children aren't really respecters of Mabel's "needs." They're just kids. 3 and 4 and unaware of the change their lives have taken. Thank you Lord, for that.




She is a mom maintaining some sense of normalcy but always feeling like she's falling short or failing. Somedays, she's merely breathing because she woke up with breath in her lungs. Most days though, most days she embraces Braden faithfully when he wakes up with his binkie and blankie. She still dances with my girl. She makes it a point to sing ridiculous songs to the daughter she is seeking answers for. She teaches her first born about what it means to be obedient and set an example. She maintains this life and in the meantime we as friends have to try and find our place in it. I'm sure most of you are feeling the same way.


What do I say?



Should I bring my kids around? I feel bad.



Nothing I can say will make it better.



If I were her, I would ....



There are enough drs, and enough PHDs flying around this house for years to come. I can tell you that Rame needs...



"I'm just sorry."



"I'm here."




"Go take a bath"



"Wanna go for a walk?"




"I'm praying."




"You're doing it."




What I have loved most about getting to know this new Ramee is that she does the very thing I think most people think she wouldn't be able to do, and that is celebrate and enjoy life with others-their children, their new milestones, their "normal." There is no jealousy. There is no malice or ill-feelings. There is no "your kid got lucky, look at what is happening to mine."




I will be honest in saying that there are sensitive days in this house. There are days where I don't verbally express excitement about milestones Harper has hit or things I am looking forward to. Just this morning when picking out props for Harper's birthday pictures, I wondered if she'd be able to make it through the photoshoot. Her desire is to be present in my life, and in yours-that much is true. There are times though, that I do tread lightly and I do that because I love her and her feelings mean more to me than getting out what I need to get out. I am trying my best to be sensitive and present in HER life. We must rally around her and love her on the hard days, good ones, bad ones, and even in the unsure ones.




Mabel is a medical mystery to us here on earth. Normal isn't how any of us would describe Mabel's development or mannuerisms. Her mighty God has woven her though, and she is an open book to His heart. Somedays even Ramee has seemed like a mystery to me and on those days I just ask if she's okay and how she feels on that day. Usually, that's enough. Usually, that will allow her the freedom to open up and say what she's feeling. More often than not, there are no answers. And more often than that, I usually just look at her with sorrow and say, "I know." And not because I actually DO know and understand her, but because I do know her heart is shredded and she is desperately searching for the answers that will glue it back piece by piece. Many of you may feel like you are getting to know a new Ramee. I feel that way! I believe we all are. The foundation of her has not changed and that is because her foundation is Christ, and He does not change. Not ever. Her situation and circumstances have changed however, and therefore friendships change, activities together change, and life takes a turn down a road none of us ever wanted to travel on.





As I have traveled this road I have found that sometimes I must walk side by side of her. Other times I have to back up and let her jog ahead and take charge. Sometimes I must make her run, otherwise she will dig a pothole and sit for awhile. Somdays we do dig a pothole and sit....for awhile. None of what we actually do matters though, what matters is that she has never been on this road by herself. We must rally around this family and love them-whatever the cost, no matter how we feel, even if we don't know what to say. We must love them.




Don't just peek in through the toy room window. All you'll see is a stuffed tiger and a random measuring cup. Come in. Make yourself comfortable. Ask questions. Hold the swaddled girl. Love them and be an active participant in this unsure, sort of scarey, but beautifully written story God has chosen them to pen. You can't mess up. You can't say the wrong thing if you say it in love, and with a heart to be there. We will not regret walking, or even sitting in a pothole every once in awhile with them.




My love,




I will walk, run, sing, and dance this journey along with you. Your girl has stolen my heart, and I only pray that my girl has filled yours in a special way. In the end, you will not give up and you will not settle, I know you better than that. There may be times in between though, that you do settle for "I don't know" and you may give up. I am okay with that. I will not judge you. I will do my best to love you, this new you. This beautiful, graceful, and sensitive new you. God is peeling your layers back and He is revealing His true self through you. Allow Him to strategically move you throughout this walk with Him. Let go of the pen Ramee, and let Him write. You don't have to have control. Do the best you can, and go with it my love. These are the best days of your life. Unsure. Scarey. Joyful. Fun. Laughing-so-we-don't-cry. Heartbreaking. Soul-repairing. I love you and want to be here, whatever that means. Put your hand in mine, love. Let's walk this road, with grace or without it. Angry or not. Answers or no answers. Smiles or frowns. Diagnosis or mystery. Together is what matters.



Love, Rache.