I cry for you today sweet Roo.
So, here I sit with tears streaming down my face. I'm tired. Tired of so many things and yet grateful for so many things. I feel so conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming so I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart. I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio and got better doctors and all the medical equipment I needed to keep you alive that you would LIVE. I believed that I could save you Roo, I believed that with all the love I had for my sweet girl that I could SAVE MY ROO.
It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again I did it because I needed my baby not to be in pain and to suffer.
The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end was that we couldn't hold her in our arms. Her breathing was so bad that she couldn't tolerate us holding her. So I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there she was suffering so bad but she would still give us that beautiful smile.
Today my arms are empty and I would give anything in the world to feel her one more time.
I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But she was strong she pulled through and I saved her from dying from aspiration pneumonia. I got her vest for her and it helped with her lungs and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming the comfort of the vest vibrations would soothe her.
She slipped away more times then I can count and each time we thought THIS IS IT!! they would call me in the room and bam! she would come right back. She fought and hung on day after day. Each day us thinking this is the day and another day passing that she was still here. It was so frustrating to watch her hurt but not wanting to let her go. I finally stopped saying to myself today is the day and just soaked up every minute more that she was with us. I got mad at her.
I'm so sorry Roo I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long I just couldn't bear it. I finally realized that you had your own plan and that you were going to go HOME in your own way. I made peace with that and said OK baby you and God know when your time is and I will stay by your side and I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby.
It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that mommy wanted that for you! It hurts Roo it hurts! I sit here and cry and my heart breaks and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease???
I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK. Some days I just can't stand this pain. I can't stand feeling selfish that I want you back here in my arms, I can't stand feeling guilty for wanting you back when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse.
It shouldn't matter to me what people think because I know the truth. I know what's in my heart I'm the one that was there. No one can know what this pain is like only other mothers that have lost their children. especially those mothers that have lost their children to this ugly disease.
Roo, I know you wouldn't want me to feel so sad to be sitting here crying my eyes and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you as comfortable as I could on your journey back to God and to heaven.
I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew no one else would be coming and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath. I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE.
Nobody has to live with that memory that image in their head. If only they knew Roo, how then could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand that image in my mind and nobody has to live with that but me and Daddy.
Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear, outfit Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket and took a deep breath and I remember carrying you downstairs and placing you on the stretcher you looked so small on that big stretcher. kissing your cheek telling you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you. I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me.
So, mommy reached out and got help and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.
I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because i have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. so now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.
Roo please help mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand and it bothers Mommy so much that people think these things that are sooooo wrong!
I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days that God and you will give me the strength to withstand the pain, to walk through it to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best and continue everyday to do my best and make you proud of me and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.
I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....