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FOR D'LON GRACE

Grace's Mom

September 2010

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SHAREUNION 2009

Oct 12, 2009 10:31am (EST)

One word: Powerful. It was so amazing that I completely understand why the devil was trying so hard to keep me from going. He tried everything…I lost my wallet on Tuesday of last week and in it was the credit card I used to reserve my hotel room, not to mention my debit card, identification and checkbook. Then halfway to the airport on Friday, I realize I left my purse sitting on my bed. So needless to say we had to turn around and by the time I actually made it to the airport, I was literally running to my gate. I only had time to wave to Missy (Sammy V’s Mom) and then board the plane. But the bottom line is the devil did not win, I made it safely ShareUnion 2009.

I had no idea what to really expect prior to arriving. Of course I asked the obvious questions from people who have attended in the past, but its something that really cant be described with words. It is something that you just have to experience. The love, understanding, compassion and support that is given and received on this board is not only real, but its also multiplied by 100 when you are able to put the face and voice with the people who have been there for you too many times to count. ShareUnion is something to experience and really cannot be described. Plus just being able to spend time in the same space with Kelly Parsons (Jack-n-kates_mom) is reason enough to come, trust me.

The Remembrance Ceremony will uplift you and drain you all at the same time. I have never been close to using the word healing since D’Lon passed away, and I for the first time this weekend I did. I have never experienced anything like the ceremony before and for the first time in a year, I think I am ready to leave the safety behind my front door and try to enjoy and appreciate Holland and I have Missy to help me along the way.

Julie (Whosures) and Tommie (AandO) are some of the funnies women you will ever meet and Tommie, you are just as funny in person as you are in your blogs. Trust me! Julie thank you for allowing me to speak with the very beautiful Rileybug, I’m still considering buying her that megaphone. Kate St. Clair (Kyle) and Jaclyn (LilyGraceMommy), their physical beauty may intimidate you at first, but 2 seconds into a conversation with them, their inner beauty outshine that which may have intimidated you in the first place. And can I just say each and every one of our Kelly P’s and Katie’s on the board are simply gorgeous and some of the most genuine down to earth women you will ever have the pleasure of meeting and spending time with. Angi (Phoenix’s Mom) thank you so much for everything…the talks, the understanding, and most all the validation! I didn’t know we both share the loss of our only children. My heart felt an instant connection to you from our very first conversation. My roommates Samantha (Trinity’s Mommy) and Cara (Carmela14) are two are now officially stuck with me. They are just two of sweetest and strongest women I have ever met. With all of the things these two women have been through, yes they still cry, but they smile, laugh, and enjoy life too. You guys made the experience even that much better. And I cant even mention James Soohoo without tearing up. Thank you so much for lending me your ear, sharing your boys with me, and your beautiful, beautiful words in closing ShareUnion 2009. You will never, ever know how much all of that meant to me!!!

And last but not least, I want everyone that post on this board to know that Shareyourstory is not something that the March of Dimes provide for us, it is something that they provide with us. You would not believe how much our thoughts, opinions and voices matter. Speaking of the March of Dimes, ShareUnion will definitely leave you pumped to get more involved. I have my fundraising hat on and Missy and I were brainstorming ideas of how we can bring MOD into the hospital where unfortunately sweet Sammy has spent his fair share of time. I encourage everyone to start saving now for ShareUnion 2010. It is worth every cent. Matter of fact, I told anyone who would listen, I don’t care if I have to roll pennies to get there next year. God willing, I will never miss another ShareUnion and my goal is to one day be strong enough to be added to the program of speakers. Melissa Middleton, I tip my hat to you my dear. The deliverance of your story and the grace in which delivered it has left me in awe.

Posted by Grace's Mom | Comments: (22) | Permalink

LOST A FRIEND

Sep 02, 2009 07:30am (EST)

Last week I received a text message from a dear friend of mine stating that, in essence, she no longer wanted to be my friend. She and her family have meant a lot to me and mine this past decade. I really don’t know what I would have done without her the first few weeks following D’Lons death.

Last week she told me she is tired of being hurt for no reason by those she love and that is why she is no longer talking to me now. The thing is, I was never Not talking to her. I don’t know how to explain to those I love that I am not the same person I was a year ago and I cant promise them that person will ever return. I know friendships, like any other living thing, must be maintained or it will die and I will be the first to admit, I have not been able to keep up with the maintenance work on many of my relationships. It’s all I can do to maintain my relationships with God, my husband, and myself right now. I have very little energy for anything else.

I feel badly that she feel as though I hurt her, however, I feel worse that the fact that this relationship being over has not caused me to lose a wink of sleep. I have not even been the least bit upset about it. I have had to say goodbye to my mom, 9 months after that – my grandma, 3 months and 17 days after that, my aunt (mother’s sister) and then 2 years to the day of my mother’s death, I had to say goodbye to my daughter. After all of that loss in a 2-year span, losing a friend, is nothing in comparison. A part of me feels as though she want or maybe even need an apology from me or an admittance of my fault, however, I feel I have nothing to apologize for. I think she wants me to fight for our friendship, but I don’t have the energy to fight that fight. With everything that I am going through, I have never put any expectation on my friends. I have never expected them to say a certain thing or act a certain way and I need for them to offer that same luxury to me.

So I thanked my friend for her friendship over the years, wished her and her family the continued gift of life, good health while they are living it, peace and happiness.

Posted by Grace's Mom | Comments: (17) | Permalink

11 MONTHS

Aug 26, 2009 05:50am (EST)

Bittersweet. That's how I feel. Is it even an emotion? I awoke still very excited about SU until I went into the bathroom to wash my face and brush my teeth and looked at the reflection in the mirror. The woman in the mirror has a sad soul and it shows through in her eyes.

It's been 11 months since my most precious blessing earned her wings. Wow! I miss her. I miss her smile and contagious laugh. I miss that sweet little voice. I miss mothering her.

My original due date was October 10, 2005 and on October 10, 2009 I will be in D.C. with all the wonderful people that taught Preemie 101 in 2005 who now try their hardest to lift my spirit and offer words of comfort and support since losing D'Lon last year. This trip is no longer somthing that I really want to do, it is something that I need to do!

Thank you all for being whatever I need you to be whenever I need you to be it. I love you all!!!!!

Posted by Grace's Mom | Comments: (14) | Permalink

FIRST ANGELVERSARY FASTLY APPROACHING

Aug 20, 2009 02:11pm (EST)

Wow, we are fastly approaching the 1 year mark. Just thinking about it makes me feel anxious. A whole year, unbelievable. What I have found to be amazing through this all is the fact that God really does carry us when we are unable to carry ourselves. Like many testimonies in my life, I have no where else to put the fact that I am still standing on the fact that God carries and blesses you when you cant do it for yourself. I have tried my hardest to blame Him for the bad in my life and very lax on thanking him for the good. I have been so mad at him that I wasnt even able to pray. I turned off gospel music, and rolled my eyes at any gospel program I ran across while flipping the channels. Even through all that bad behaviour he still bless me with the love of a good man and the desire to make the effort to walk this journey and not just curl up somewhere and quit. I dont know where I would be a year later without without my faith in Him even if I dont understand some of the decisions that he makes. I will never pretned like I understand why he did not give my daughter the continued gift of life. Never, ever in a million years and right, wrong, or indifferent, when I get there, I plan on asking him just that. I was taught its not what you say, its the way you say it. I have no intention of being disrespectful in my presentation of the question, but I fully intend to ask it.

So I have been thinking about what am I going to do to mark 1 year and I have decided absolutely nothing. I am not going to do any kind of celebration. What am I celebrating? Her death. I guess I could spin on it and call it a celebration of her homegoing or something like that, but that would be fake. That would be an act because that is not how I feel at all. I wish I could go to sleep and wake up October, but that is not going to happen. No, I will not premeditate what I will do on that day. If it brings happiness and lots of fond memories, that would be great. If it brings a day full of tears and why her, I will roll with that too. But what I wont do, at least not this year, is make it some kind of celebration because her not being in my arms for a year is nothing to celebrate.

Posted by Grace's Mom | Comments: (11) | Permalink

I'M SO EXCITED!

Aug 06, 2009 06:39am (EST)

I met a woman here on a Share about a year and half ago. She had just given birth to a 25wkr and was very scared. I commented her blog here and we developed a friendship off group. At the time, I thought God sent me to her to be a blessing her life. I shared our NICU journey and offered hope and encouragement through D’Lons life, when the scary white coats offered none. Now I know that God, and His infinite wisdom (even if we don’t understand it), sent her to be a blessing in mine. I do not have the words (and as you all know I’m pretty wordy) to describe what Melissa has meant to me these past 11 months. She, her Mother, Father, and Sister have been such a blessing to us. Their words of encouragement, inspiration, and understanding (as much as they can) have, on many days, brought sunshine when there was nothing but rain.

Tomorrow Dwayne and I will be picking up Melissa, Cathy (her Mom) and the Beautiful Janiah Joyce (who is now starting to take a few steps) from the airport for a 4-day visit. I am so excited to meet 3 generations of this beautiful family in person. Dwayne brought a big jug of Purell home yesterday and set about disinfecting all the doorknobs and handles in the house with Lysol. Our house smells very sterile. He said to me this morning, well there is going to be a little one in the house this weekend and then gave me the sweetest smile and wink it made my stomach get butterflies (I cant believe after 19 years he still has that affect on me).

My SIL Terrie is also coming for a visit on Saturday. She is the youngest and Dwayne is the oldest and I call them the bookends. Terrie so love her niece and she misses her tremendously. I sometimes forget that I am not the only one trying to learn to live a new normal. She visited that little girl just about every weekend. Sometimes D’Lon would be all in her grill or if her Daddy was around wouldn’t have anything to do with her, but that didn’t stop her Teetie from coming to visit her. Dwayne and I were trying to sneak out of Louisiana when we moved and Terrie came by as we were just about to pull off. The hurt on her face still haunts me. We should not have done it like that; we should have allowed people to send us off. Especially her, but we didn’t and I can’t apologize enough for that. Dwayne knew I was in no shape for goodbyes and in his never-ending quest to protect me, he was trying to get us out of there with as little fan fair as possible.

Speaking of Dwayne…I am just so blessed to have him. To marry as young as we did (21 & 22), to be so intuned at such a young age to realize if there is such a thing as soul mates we have met ours. We were in the car the other day on our way to the store and he just looked at me and said, Subsea 7 is where he earns the money to support us, but his job is to make and keep me happy. WOW! Some people will never know a ¼ of the love I have with this man. I truly believe that God designed and designated this man just for me. I love you Babe!!!!

It feels good to be excited and looking forward to something that I am just beside myself

! I don’t know how long this good feeling will last, but I am going to revel in every moment of it.

Posted by Grace's Mom | Comments: (9) | Permalink

MISSING MY BABYGIRL

Aug 03, 2009 06:44pm (EST)

I’m having a hard day. It’s been almost a year and I thought things would be easier. In some ways it is. I no longer look for nor run from 9:47 pm. I no longer dread Fridays. They are just another day in the week and not the day D’Lon died. I stopped marking her death in weeks and started marking it in months and will soon be marking it in years. I have no idea when those particular things stopped being an issue for me, but they have. I no longer take sleep aid, nor do I spend my entire day crying. I guess almost a year later she has been gone long enough to be a memory. It’s been long enough for my brain to really process and accept that she is not coming back. It was so hard in the beginning because all I could think is 3 days ago she was here, or a week ago she was here or a month ago she was here. It was just too soon for me to accept the fact that she was now a precious memory.

Ending the day is still so very hard. I no longer cry myself to sleep, however, I never fall asleep without crying. It just hurts my feelings that she is no longer here. I do not awake to tears any longer, however, I awake each morning very sad. It takes a little while for me to shake the feeling, but once I do, I am able to get through the day okay. I recognize that I now stare off into space frequently. I realize sometimes I rock a little bit from time to time. Shoot I have even taken notice of the fact I sometimes have to shake my thoughts out of my head, literally. I suppose on the outside looking in, I may appear to be a little crazy lol, but I am far from that. I am perfectly sane just scarred. I am in a battle that on some days actually feels like a war. I know in the end I will win, but I will more than likely remain permanently scarred as a result of the fight I am in. I’m okay with that. I’m not the least bit worried about it; I just accept it as part of me now. Will these things eventually disappear without my noticing like some of the others? I don’t know, but for now I will just accept them as part of my new normal. How can I fight the fact that I miss her and as a result of losing her, I am no longer the same person.

I've cried on and off all day today. I miss her. Missing her is the only thing that brings me tears. (Except when I have uncontrollable flashbacks of her last week or her last day...I try very hard not to think of those events and for the most part, mommy's brain is still protecting her from them). Sometimes the urge to want to see her, touch her, hold her and love on her is so strong that there is nothing left to do but cry and ask God to please have mercy and give me the strength to make it through the moment. I have prayed for that strength many times today!

Please know, My Love, me trying to move forward is NOT me moving away from you. You are with me every step I take. You live through me now baby. I am still here and I want more for our life than what I'm putting into it now.

I love you D'Lon Grace Toney with all that I have in me!

S7300870

S7300865

Posted by Grace's Mom | Comments: (14) | Permalink

LOST

Jul 29, 2009 11:05am (EST)

I have never felt so lost in all of my life. I feel so small and insignificant. My smile and personality used to be a big presence in a roomful of people. Now I feel so tiny that I could blend in with the furniture and no one would notice. I was listening to a song by Mariah Carey called Breakdown and there’s a verse in it that says “Well I guess I’m trying to be, nonchalant about it, but I’m going through extremes to prove I’m fine without ya, but in reality I’m slowly losing my mind, underneath my guise of smile, gradually I’m dying inside. Friends ask me how I feel, and I lie convincingly, cause I don’t want to reveal, the fact that I’m suffering, so I wear my disguise til I go home at night and turn down all the lights and then I breakdown and cry.” This verse in many ways sums up where I am at in this now. This is will forever be a part of my life, but because I don’t want it to forever define me, I really try to not only act strong but also be strong. I talk about her death as if something like that is an everyday occurrence and by the time I’m finished, people tell me how strong I am and it’s a safe segway into another conversation. I notice that is my way of protecting myself. I liken it to the person who points out his or her own flaw before anyone else has a chance to thereby deflating the conversation before it has a chance to balloon.

Dwayne and I celebrated on 19th wedding anniversary on July 26th, it also marked 10 months since grew her wings. There goes that bittersweet thing again. I wish I could just go to sleep and wake up in October. Although our year mark is in September, the countdown begins August 6th. That’s the day her echo (heart x-ray) showed her elevated pulmonary pressures. They put her back on oxygen (2 lpm) and our beloved Dr. Levine who I completely trusted said to me, we have to get her pressures down before she starts feeling like what her pressures indicate. She DID NOT look like a sick little girl at that time!!! No one would have ever guessed that she was sooooo sick. I HATE PULMONARY HYPERTENSION!!!!!!!!!!!

I have got to find a way to move forward. There is a difference between acceptance and moving forward. I have to find a way to deal with the world because I am still a part of it. I have got to stop being a part of it on my terms. I know I cannot make my home and Dwayne my life. I can’t stay behind the door of my safe world. My Mother in Law told me the other day that she wishes she was with me because she said in my conversation it sounds like I don’t have a care in the world but Dwayne. Like he is my only reason for whatever. I thought about what she said and she is right. I have made Dwayne my reason. She saw it just through my conversation, but he is living it and that is so unfair of me to put my shit on him like that.

I am so lost. I am so sad. I am so hurt and I am just exhausted. Everyday is not like this, but there isn’t a day that this isn’t a moment or two in my day. I have got to find reason within myself to make the effort to move forward and I have no idea how to do that. I haven’t worked outside the home in 4 years but I have updated my resume and references. Dwayne being the only earner was fine when D’Lon was alive. That was the plan whether she was premature or not. However, although we are fine with just his income, it would be better with two. We would be able to make real contributions to savings and maybe travel a bit without using credit. If not work, then maybe some courses at the community college here but either way I need to do something. I know I cannot just sit in this house and just be sad. I have got to find my way back into the world. The me outside of we. I need to continue to be a whole person in my relationship not someone who need completion and definition through my relationship.

Posted by Grace's Mom | Comments: (16) | Permalink

THIS BLOG IS ALL OVER THE PLACE

Jul 16, 2009 06:22am (EST)

This past Saturday was spent in good company, enjoying good wine and good food. I knew Dwayne and I would be going to a little get together on Saturday with 2 other couples, one of which has a 4 year old little girl named Jade. I spent the good part of last week counseling myself. Convincing myself that I could do it, I will not have Dwayne make an excuse for why would be unable to attend. I am glad we went for a couple of reasons: we would have missed out on a really good time and I would have missed on an opportunity to test my strength. I am very, very proud of myself. Not once did I feel the need to excuse myself to “use” the bathroom, unless I really had to go. I enjoyed Jade for being Jade and did not look at her through eyes that say look at what I lost. Once her heart led her to yoyo (that’s what she called me) there was no stopping her. She pulled me into the house away from the grown ups and we watched the backyardigans (that was soooo hard) and the wonder pets. She held my hand and gave me hugs and kisses. I reveled in each and every touch from her four year old little hands.

I have been thinking a lot about my faith lately and the fact that without it, I truly don’t think I would be able to survive losing D’Lon. It hasn't provided the quick fix that I need, but it is starting provide some amount of comfort. I was raised in the church and for a good part of my childhood I thought Christianity was a religion. I didn’t understand why my Aunt who is Jehovah’s Witness and their children didn’t celebrate their birthdays, or acknowledge Christmas and things like that. I didn’t understand why my cousins were not allowed to come to my birthday parties and what that had to do with their church. I also didnt understand why there always seemed to be a religious debate whenever people from different "groups" were in the same room. Each trying to convince the other their religion is right. I didnt get it because if the bottom line was to live right in a way that's pleasing to God so we can get to heaven, why so many different groups, opinions, and rules.

I didnt understand why I was not allowed to wear pants to certain churches when the bible clearly says come as you are (in Matthew where He makes fishers of men He tells them to come to Him as they are) or why I had to take my nose ring out before attending certain churches when Rebecca (Isaac’s wife) clearly wore a nose ring, it was a gift from Abraham (her father in law as a dowry for marrying his son) so why was it wrong or disrespectful to God if I wore mine? I have attended a church or two that if they had any gay members, through sermon, they were made to feel like they were wrong and somehow they can be prayed straight. However, in the same breath, pastor preaches God makes no mistakes. Clearly if I feel in my heart I was born gay, then how in the world am I a mistake?

It seemed like there were different rules and emphasis on certain parts of the bible depending on what "group" you belonged to. It wasn’t until I was an adult and I stepped outside of what I knew and fellowshipped with groups other than Baptists and I learned a couple of things: I was spiritually fed from Catholics, Musilims, Johovahs Witness and Buddhist. I learned a little bit of something spiritually from each of the groups. However, I didnt want to "belong" to any of them. It was then I realized Christianity is NOT a religion and I dont have to "belong" to any religious sect to be a christian. Being a Christian is simply one who loves and believes in Christ. Someone who tries their best to follow the Ten Commandments understanding they will fall short because we are all sinners. Someone who know their bible for themselves and can take the word and apply it to their life and today’s times as best they can. No you will not find me throwing scripture at you, but I will speak to you and try to uplift you with words from my heart of hearts. Words that I try to live by myself. Words that I believe if it touches your heart in any kind of way, then God put those words on my heart to say to you. No I am NOT religious, but I AM spiritual. I don’t have to belong to one of the many groups that fall under Christianity to have a relationship with God.

I was speaking to my MIL the other day and she informed me that my step BIL and his wife just had a baby. I would be lying if I said that it did not affect me. Not the fact that they had a baby, but t he fact that people who are not in a position to take of children are so easily blessed and people like my husband and I are not. I have never shared this with you guys but my MIL and her husband lost 2 grandbabies on September 26, 2008. My FIL son lost his granddaughter to suffocation about 6 hours before we loss D’Lon to Pulmonary Hypertension. Yep, you read it right; our family lost two babies on the same day within 6 hours of each other. It get better, both girls died on the same day as my Mother 2 years and 9 days after my mother. The girls died on the day we buried my mother. I believe that my Mother was there to receive both of those precious babies. If this would have been anyone else’s family, I would have said something like wow that family have some bad karma over them. Really, I would have made such a comment really believing there was something they could have done in their life to have such tragedy strike. Thank God, I no longer believe that. Thank God that I know better now! Yes, I believe in Karma, but it I no longer believe it works that way. I don’t believe that D’Lon paid the price for something me or her Daddy may have done.

I miss my girl…I miss her so very much! I wish it didn’t have to be this way! I am really tired of having the wind knocked out of me. My reality is always there, waiting to tap me on my shoulder so I can turn around and it just punch me in the stomach. How do you get use to missing your child? How do you learn to live with that? Seriously.

Posted by Grace's Mom | Comments: (9) | Permalink

9 MONTHS

Jun 26, 2009 06:00am (EST)

I really am tired of marking time. Soon, very soon, I will stop marking her death in months and will start marking it in years. The last couple of days, I have been thinking of day that she died. I got up that morning at 5am like I did every morning so I could spend a couple of hours with her before shift change. I went to the chapel like I did every morning before going into the PICU and on that morning, I prayed the prayer no Mother ever wants to have to pray. But because being a parent is the most selfless act one will ever play out in their life, I basically asked God to either heal her or take her, but it cant go on like this. Full support for 6 days and every time they try to wean she crashes. It can’t go on. As I was leaving the chapel 2 things happened…as I walked out the door, I heard clear as day “Today is the day”, instead of going into the PICU I walked outside of Children’s and found someone with a cigarette and for the first time in 10 years I smoked. I finished that cigarette in what seemed like 3 inhales.

I didn’t think about what I heard leaving the chapel again that day until Dr. Levine came and woke me up just as I dreamt D’Lon was holding onto my leg. What I know now is the dream I was having prior to them coming to ask if we wanted them to try to save her was her coming to me at the time of her death because 7 minutes later they told us they were unable to get her back. I chose not to be in the room when they tried because I knew in my heart she was already gone and I was already in survival mode. I knew I did not need that image in my head, as it was bad enough I am going to have to live with images of me and my husband holding our most precious blessing lifeless body.

I had a revelation a few months ago. I believe, no I know that D’Lon died on September 20th when we left out of home in the ambulance. Yes she hung on for 6 days but that was for us to come to grip with the fact that there was a real possibility that we were going to lose our girl. I feel God and my beautiful baby girl allowed me to feel like I was somewhat in control because they knew when I prayed that prayer on the morning September 26, 2008, I understood that I had to love her enough to let her go. Dr. Levine came and got me at 9:40pm and she was pronounced as 9:47 pm. The first person to came to mind after he walked back in that conference room was Kate St.Clair and a sentence from her blog and I said aloud to no one really “she was snatched away, just like that".

Rest in Paradise My Love….I miss you every second of every day. Every day that we live, we’re a day closer to you, still trying to make you proud as we promised we’d do.

Posted by Grace's Mom | Comments: (15) | Permalink

HAPPY BIRTHDAY

Jun 14, 2009 01:41am (EST)

Happy Birthday to you, Happy birthday to you, Happy birthday dear D'Lon, Happy Birthday to you!

I am going to think of only good thoughts of you today My Love. I want to celebrate you and the time we had together. I cant guarentee sadness wont creep in, but I will try very hard not to cry tears of sadness. If I do, please send me one of your "don't cry Mommy" from Heaven. Put your little hand under my chin and lift my face up like you have done so many times before.

I love and miss you my Princess. Thank you soooo much for choosing Daddy and Me as your parents. Although we wish with everything we are made of that you were still here, we know how blessed we were to have you. You gave me everything I wanted. I wanted to experience morning sickness, a baby bump and believe or not stretch marks. You gave me that. I wanted a little girl, and you were all girl. I wanted you to have your Daddy's beautiful brown eyes and yours were even prettier than his. However, most of all I wanted to experience the love between Mother and child. I have never known a love so pure. Thank you for that sweetheart.

Rest in Paradise, My Love! Missing you every second of every day loving you more and more along the way!

Mommy

Happy 4th Birthday

Posted by Grace's Mom | Comments: (20) | Permalink

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