March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

FOR D'LON GRACE

Grace's Mom

March 2010

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

I'M SO EXCITED!

Aug 06, 2009 05:39am (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 05:44pm (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 10:05am (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 05:22am (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 05:00am (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 12:41am (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

I'M SAD

Jun 11, 2009 11:22am (EST)

I am just so sad. D'Lons birthday is Sunday and I am having a hard time. I really am. I hurt so badly. I just miss my girl. I miss my little person. I know this may sound insane, but she was my little friend. We did just about everything together. I miss everything about her. Believe it or not that includes all the medicines and the oxygen. I just dont know what to do with all this pain.

My body is reacting to all of this. My defenses are down and my grief is manifesting itself in the forms of boils. I know that sound crazy but that is what is going on. I have decided to take the advice of a fellow angelmom and very wise woman (Kelly P) and get my presription filled for my anxiety medicine. I was hesitant in taking anything because I didnt want to be a walking zombie. I wanted to be able to feel. But after a nice email chat with Kelly I realize I need to give my body a break. Since I cant turn it off on my own, I need some help before I end up in the hospital. Thank you so much Kelly for your words of wisdom. Dwayne and Dr. Bui thank you too!

This is the hardest journey of my life and I know it is neverending.

I miss you every second of every day my little D'Lon Grace

Imported Photos 00027

75e9118eac13

DSC03381

Posted by Grace's Mom | Comments: (8) | Permalink

I'M A MESS

Jun 02, 2009 04:50am (EST)

I started a blog several times yesterday but ended up a crying heap on the sofa each time. I know whats wrong and I have just been trying to keep it in the background. It's June and in a couple of weeks, D'Lon would have been turning 4. This was going to be the birthday of all birthdays. Her one year birthday was just the 3 of us and a cupcake with 1 candle. Although small, it was mighty in its celebration. Her second one she spent recovering from viral pneumonia having being released from a 3 day hospital stay the day before. It was the 3 of us, her OT and bestfriend Joanne and her PT and other Mother Chris. There were balloons, hats, and cake. Last year, we combined her birthday celebration with that of her godbrother to give her a feel of what a true birthday party celebration is like with kids. Her 4th year birthday celebration was going to be the one. She had her set of friends that she saw regularly, she was more social towards children in general, we had been practicing singing the happy birthday song as loud as we could. It was going to have a Backyardigan theme, with Tyrone (her chosen one) being prominent character.

I'm a mess and I am finding it very hard to pull myself back together. I almost feel like I am at the day after she passed with that constant, raw, gutwrenching pain. The pain that stays with you as you sleep, and spring from your eyes as soon as you open them. I hurt all the time. What is going on? I am 8 months into this. What do you do with all the longing? What do you do with the yearning? What do you do with that? Its not something that can be counseled away, talked away through therapy, drugged away, drank away, there is nothing a person can do but live with it. There is absolutely no other choice. For all the good I am trying to do, and all the good I still have and hold sacred in my life, for all the good that I plan to do in the future in honor of my child, none of it stops the desire to have more time. I had 3 years, way more time than alot of wonderful women I have grown to love have had with their children, and yet I feel cheated?

I am just full of anxiety waiting on June 14th. I have broken out in 3 boils in various locations, one of which I had to have lanced yesterday. My nerves are shot. I plan on doing what we have done since her birth, fill her room with balloons. Only this year, its not her room perse, its just the spare room with some of her things in it. But I will fill it with pink and white balloons and I have decided to attach a card to the them with a little bio about her and the urls to my blog here, on myspace and my email address asking people to drop me a quick email letting me know how far the balloon travelled.

Oh how I wish we would have had that fairytale ending in which she would be telling her story as either a NICU nurse or better yet a Neonatologist giving hope and inspiration to the scared parents before her. Yeah I know, she may not have been neither a NICU nurse or doctor, but be it that I was the co-producer to her show, I had planned on trying to work that in the script along the way

As always, thank you so much for letting me write til I feel better and let me forewarn you, I am going to need some major hand holding in the weeks to come.

Yolonda
Brokenhearted Angelmommy

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

8 MONTHS AND I'M TIRED

May 26, 2009 06:17pm (EST)

My heart feel as though it is breaking in a million pieces all over again. I dread the 26th of each and every month. Even if I make a concious effort not to think about it, there it is front and center. It's almost like everything that has happened has is just now hitting me. I really held my daughter's lifeless body for hours kissing her from head to toe before walking out of that hospital without her. I lived that. I really went and combed my daughter's hair, making it extra pretty the day before her memorial service. I lived that. Oh my God, did we really have a memorial service for D'Lon where I got up and spoke about my baby for 20 minutes straight because couldnt no one tell the story of her life better than I could. I stood there and told the story of my daughter with dry eyes and nothing but love. I did that.

Its been 8 months since I've held, kissed, touched or loved on my baby. I am so tired of marking time. How in the world am I suppose to celebrate my 19th wedding anniversary when it falls on the 26th of July. July 26, 2005 we celebrated in joy cause our beautiful girl was extubated. It was a joyous day and now I cant believe I am going to dread it. I know I shouldnt premeditate how I am going to feel, but.....

D'Lon Grace I love you more than ever! When others forget I will always remember. I fighting hard to live this new endeavor. Re-learning to trust God as he knows what's better. Making sure when I die, we'll be together forever. Rest In Paradise My Love!

Posted by Grace's Mom | Comments: (12) | Permalink

JUST THOUGHT I'D SHARE

May 18, 2009 12:51pm (EST)

See where her name/story has travelled so far