Monday, May 31, 2010

A little compassion please.....

During these last two weeks I have felt overly judged and extremely criticized and to be honest, it has been rather frustrating. I have experienced several instances in where people's comments have wounded me quite deeply. For this reason alone I have decided to work on not allowing what people think to affect me, as they will always find it necessary to express their opinions to me. I have written this post in an attempt to vent about my feelings. I want to impress upon the importance that though I use the term "you" a lot, this post is in no way directed at any specific person. It is used lightly and as a general term nothing more, so please do not take it personal. I also am in no way trying to attack or hurt anyone with my words. Please also understand I am in no way asking anyone to agree with me, I am simply making suggestions along with asking for a little compassion. This is my truth and I hope it does not offend anyone for that is not my intention.

Please understand that I respect and value each and all of your opinions. In short, I am not asking for you to change who you are or how you feel, not in the slightest. I am simply asking you to extend me the same courtesy of not trying to change me. I am also asking that you consider my feelings as you expect me to consider yours.

Stating the obvious to a grieving parent can be very hurtful. May I ask that you please refrain from using comments such as "move on" and "life goes on" or any variation that are similar. Though unintentional it can come across as asking me to forget my darling Lilly. This I can not, and will not do. May I suggest comments that have been suggested to me such as "move forward" or "move through" I am also as stated before ACUTELY aware of the fact that the "world keeps turning", I am reminded of this fact with every breath I take. I also am very aware that I have living children to "carry on" for and "things need to be done". We are still living and I feel if you stop being blinded by your criticisms and judgments on my life, then maybe you would see that I am doing alright considering.

I also realize that the death of an infant in some way reminds people of their own mortality. I feel that this may partly explain why people find it awkward to be around me. I feel it is due to the fear that the reminder of death brings. Death simply put, is a natural part of life. We all die, that is something we all know and sometimes fear, but that is neither mine nor Lilly's fault. And I am not trying to rub that in.

My sadness may sometimes be too much for you to be around as well. Though I understand that, I will not apologize for me missing Lilly. She means that much to me, I am however sorry she means that little to you, but that is your choice. The sad fact remains that parents should not have to outlive their children, but it does happen. It has happened to me. You may be so willing to quickly "move on" so as to "forget" the pain of losing an infant, but I am not. It may be easier for you to "ignore", but I will not and please do not expect me to. In my mind "ignoring" so as not to feel the pain or "forgetting" just feels unhealthy to me. I welcome the pain because it goes along with not "forgetting" Lilly. And it is not all painful. With the exception of the moment she passed away, all my memories of Lilly, are happy ones. Looking at her pictures ALWAYS makes me smile. The sad part lies in that I am separated from her. Though I am sad she is not here with me, I am not sad for Lilly. I feel she is with God, and that alone makes me happy for her.

I have also been frustrated with how easily you all share with me how hard this is for you to watch. I do understand that you love me and are having a hard time knowing that I am going through this and in turn feel helpless. I would like to ask for a little compassion in that while this is hard on you, please understand that this is especially hard on me as well. This pain though irrevocable is real. Might I add that this pain is also still very fresh and raw. May I remind you that it has only been THREE months!

I wanted to offer a recent example of a thought that randomly popped into my head. I was watching a commercial where a young girl was complaining about having to wear her older sisters jeans, and it made me sad that my daughters will not share in this experience. Although, I have accepted that there are a number of life experiences Lilly will not have, these thoughts still do present themselves from time to time. And I believe they always will. However, though I chose to not allow these thoughts to consume my daily life as I am fully aware of the repercussion of allowing them to do so, there will be moments they will affect me more than others.

Please also know that though we were given Lilly's diagnosis at 21 1/2 weeks it has not made losing her any easier. Might I remind you that we chose not to grieve Lilly until the moment she died. The shock may not have been as severe as it would have been had we not had a "warning" and "time to get used to the idea" (as you so bluntly put it), but we still experienced shock nonetheless. I would like to inform you that I do not place my grief above or below your own and I politely ask you to do the same for me. Our grief simply put, is different.

Might I also point out that while it may be hard for you to watch us and feel helpless in taking away our pain, we had to watch Lilly die as we felt helpless to take away her pain or even save her life. No parent should have to experience that and it can in no way be related on the same level to the helplessness you are feeling. It is just not the same. I am not trying to be selfish with my emotions, or expecting you to put your feelings aside for mine, though I do feel that is what you expect of me when you "compare". I am just asking to be heard and for my feelings to be considered.

Also I ask that you please respect that this blog is for the journaling of my life without Lilly. It is a safe place to do so without feeling that I should censor myself. I fee it is my right to have a safe place to do so. It is an outlet for my emotions. This may be all too sad for you to be around and that is OK, just do not expect me to run away as this is my LIFE and I refuse to run away from the memories of my daughter. And though she was alive for a very short time it in no way makes her any less of a person.

I feel exhausted from having to reiterate that I am allowing myself to feel each emotion as they come. I feel you are constantly fighting me, judging me, criticizing me. You somehow feel it necessary to inform me that you disagree with my choices. From moving to part time, to volunteering for Rachel's Gift, to blogging. Which is mind boggling because to me it makes sense to help others, it always has. I feel I have told you what I do and do not need from you but you seem more intent on getting your point across rather than hearing my perspective. I do not feel it is much that I am asking for. I have accepted this. I am not asking you to do the same, just to allow me the right to.

I can definitely see why people may grieve in silence. The world at times is not a place where we can feel accepted and can at times be very cruel. We are judged far too often by our friends and family members even at times strangers. Its bad enough that we feel like outsiders most of the time, even in our own skin. We are in a way forced to surround ourselves with others who are unfortunately experiencing the same loss. Which then leads to judgment and worry on whether or not what we are doing is in any way detrimental to what you consider healthy. While I do not feel there is a specific way to grieve, I will say that I believe the HEALTHY grieving can be defined as those that are grieving in the way that is best for them. It is not helpful for you to express that you expect me to be any other way that who I am. I also politely disagree that you expect me to "regress" or "get worse". This leads me to believe that you want me to "regress". I should be devastated, I lost my child, could you really expect anything less than that? I will not fit the mold of what you feel grieving should be, and I feel it is unfair of anyone to expect me to.

It is sometimes difficult to hold it together without the added pressure that comes from your opinions or concerns being brought to my attention. I do not believe that any of this is too much to ask. You say that you can not begin to imagine what I am going through, you are right and I hope you never have to. I can do without your judgments and concerns to whether or not I am grieving the right way. There is NO RIGHT way and NO ONE way to grieve. We all lost Lilly and grieve for her in different ways, and I hope one day you will be able to understand and accept that. We all have unbearable sadness in our lives from time to time not even relating to the loss of Lilly. I would not expect you to get over your feelings so easily.

I have accepted and am grateful that you will never understand my grief as Lilly's mother, and surviving her as I do not expect you to. All I ask is that you extend me the same courtesy you so easily expect from me when expressing your feelings. I am also not asking for you to agree with me or accept me. Just that you simply agree to disagree. If you truly love me and care about me as you say you do, then please I ask you to trust in me.

Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.
Ephesians 4:29

Saturday, May 29, 2010

Threads of Hope-Pieces of Joy 5

To read previous posts on Walking With You, please click here: Walking With You.

Walking With You is an outreach of Sufficient Grace Ministries, led by Kelly Gerken. We are a group of mothers who have lost a baby or child. We gather together from different places on our journey, each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.

This chapter is about depression, guilt, and fear.

On Depression

"As no two crystal goblets shatter in exactly the same pattern, no two people grieve in the same manner. This too, can be a source of loneliness as we seek out others for comfort. Even those with similar experiences may not be able to relate to our loss."

The above statement is so true. We all grieve differently according to what is best for us individually. I feel sometimes we as grieving parents are often times judged and tried to be placed into this mold that others feel we should fit into. That can make us feel unaccepted and in turn makes us feel even more alone. Or the reminder that "we have to keep going" as we are acutely aware that the world keeps on turning, and we do not need to be so constantly reminded.

I have turned to several individuals who have been great supporters (you know who you are) one of course being my husband Jim. Mostly, I turn to God and He lifts me up. I will listen to some Christian music and will feel uplifted or turn to scripture and be reminded that He is there and He is a constant support in these new shoes I am learning to walk in. I stumble, and sometimes I fall, but He is there always to catch me and guide me. The song that has been uplifting me recently is "You Deliver Me" by the Christian group Selah.

I can say the failure and lack of support has come from those who expect me to fit into how they picture grief to be like. Which is disappointing because then I feel judged and criticized, neither of which make me feel loved or supported. Mostly I get frustrated when those who are watching us go through our grief tell us it is HARD on THEM and they feel helpless as they stand by and watch our suffering. I do understand where they are coming from, but forgive me when I say this is not about them and their inability in being able to help us. I have to learn to live in a world changed from this life altering experience of losing a child. This is a 24/7 battle, and one day I will get better at it. However, the pain of it all will NEVER go away. They say they can't imagine, that's fine and completely acceptable.

I recently was getting so frustrated because I just wanted to feel accepted in the way I grieved. I've painfully realized that this will never happen. I accept myself and who I am today and I am not going to apologize for who I am. I will grieve forever and not according to anyone's schedule or guidelines. For those who can not or will not accept that I will distance myself from. I'm not going to apologize for this being HARD on THEM. Frankly, I feel its rather selfish but they are entitled to their opinions and feelings as I am so I will not begrudge them for it.

I feel the physical signs of my grieving may be my eating habits. I am working on that as I have been eating more and more on a daily basis. I have recently come to the realization that I can continue to eat for myself as well as for Lilly. Let me elaborate; after we found out Lilly had anencephaly I made the decision to eat everything I could for her from candies, to cupcakes, to all my favorite foods and a few that were not even close to my favorite foods. Whatever I craved, I ate for her. So I can continue to do that and its a great reminder of her so I think it will really help me.

On Guilt

Though I know that what happened to Lilly was an anomaly and very much out of my control, I still can not stop myself from sometimes feeling guilty. I am working on handing my guilt to God as blaming myself will do no one any good least of all myself. It was just that, out of my control.

Be sober, be vigilant; because your adversary the devil, as a roaring lion, walketh about, seeking whom he may devour. - I Pet 5:8

I have always felt the devil works hardest when we are at our best. Yes, I am sad that Lilly is not with us, but I can not be sad that she is in Heaven with our Lord. For that I rejoice and hope to one day be reunited with Lilly. My hope keeps me happy even in the midst of my storm and I feel that the devil works his hardest to steal that happiness. I feel it angers him if we do not turn from God even though we may have every reason too. The fact that we remain vigilant and constant in our faith is when he works his hardest to tear that from us.

On Fear

My greatest fear has been lived. I have feared the loss of a child. The fear I now have is of course losing another child. There have been times I've felt anxious when I am away from my living children. The blinders are completely off and I am so acutely aware of what can happen. Although this fear is constantly in the back of my mind, I calm my anxiety by continuing to live my life the way we did while Lilly was here. Besides picking out a funeral home and giving them a heads up to our situation we did not plan Lilly's funeral until the day after she passed away. We made the decision to enjoy her as long as we could and live life as normal as possible so that she would have that experience, how little that may have been. Keeping that mentality is very difficult now, but I am reminded as I look back on our time with Lilly that it was full of happiness and love. We refused to mourn her while she was still alive, it just made no sense to us. And we felt she could hear us (as I feel all my children were capable of hearing us in the womb), we didn't want her to feel like we were giving up on her. And though I find it difficult I feel we are doing her no justice if we lose that now. If I lose that now. I know things can go wrong as I've lived it, but allowing myself to be consumed by those thoughts will make trying to "move forward" more difficult than it already is. I can not allow fear to stop me from living my life.

I wanted to explicate that how we chose to spend our time with Lilly was a personal decision for us and that I am in no way passing judgment on any other families who chose differently. This is just how my husband and I chose to deal with Lilly's diagnosis. I did have some moments during my pregnancy with Lilly where I cried uncontrollably, and I felt guilty about those times. I am very hard on myself and feel so guilty at times that I did not want to feel guilt while I was pregnant with Lilly. I did not want her to know that emotion, as I myself have felt the power of it far too often. Nor did I want to look back and feel guilty about how I spent my time with her and I knew that if we had chosen differently I would be beating myself up hard for it.

Friday, May 28, 2010

3 month mark #2

Today there was a calm over me for the most part. I felt at peace for most of the day. I could not help but laugh and smile. There were tears of course, but joyful tears if that makes sense. I miss Lilly, but today I felt she was with me. Its amazing how I feel she is with us especially during the times where I am having difficulty keeping it together. On these days I like to reflect on the few memories we have of her. They seem so clear on these days, as sometimes I feel the memories are slipping away and I am afraid I'll lose them forever.

For her funeral, we dressed her in yellow. We were shopping for her outfit the day before her service and the dress stood out to me. I wasn't sure it was going to fit her being that it was a 0-3 month size dress. Thankfully my husband talked me into getting it and it fit her perfectly! Every day I pass this dress shop and the mannequin's dresses are changed at least weekly if not more. They've been the same all week and today all the dresses were new and YELLOW!!! I almost walked in there to buy one of the dresses.
We ordered the flowers for Lilly the morning of her graveside service and we wanted lilies for obvious reasons. Turns out the flower shop had just ONE open lily. Guess what color it was? YELLOW!!!! And the day before Lilly's service, my husband and father in law went to order a blown up picture of Lilly the examples for sizes to choose from had a picture of a lily on them. I realize lilies are very common flowers, but I think she was with us then too.

We didn't plan it but we all ended up wearing something pink to the funeral. It started with my husband's tie. He had chosen a tie with little light pink roses as a design on the tie. I wanted to match him. I wore black of course, but my top was a more pinkish fuchsia. From our children to our parents, each of us wore something pink. The funny thing was that Lilly was in yellow, so we weren't matching, but it was nice that it worked out the way it did. Its so amazing how things work out.

Another memory I would like to share is when Jim and I dressed Lilly for her graveside service. We each put on one of her shoes, and low and behold I put the left shoe on her right foot. I have done that to each and every one of my children, even Lilly. It is so nice to have that as a memory. I can not tell you how much it means to me.

Today, I reflect back on the time we had with Lilly and how amazingly joyous it was! It still is joyous to remember. Its just sad that she is not here with us, but at the same time she is with our Lord and I can't be sad for her. Just miss her!

Wednesday, May 26, 2010

A New Page: Power of Prayer

I added a new page to Lilly's blog. For those of you not familiar with the blogging world, if you click on Power of Prayer located directly below Lilly's picture, you will be directed to view the new page. Its new and a work in progress so may change throughout. The first family on there is the inspiration behind this page.

When we were told of Lilly's diagnosis of having anencephaly we were devastated. During my pregnancy with Lilly we were on numerous prayer lists around the United States as well as around the world. I believe that Prayer is powerful. The power of prayer was a great support and comfort. Knowing that we had that support and that love was very powerful and helpful. I have leaned a lot on God throughout my life, but not more than I have been the last couple of days.

For anyone who would like to be added to Power of Prayer please feel free to leave me a comment or email me at (weird address I know, I've had it forever!)

Saturday, May 22, 2010

Three Month Mark #1

I miss Lilly! Sometimes it feels that the further away I get from her birthday and day she went to be with Jesus, that it gets harder. Yesterday at work, I had one of what I refer to as " my moments" I had so much support from the ladies at work, and to name a few, thank you Cindy, Dianne, Lee Ann and Deb! I didn't ask if I could use your names, so I hope that it is alright as I did not include your last names.

I was entering the date into the computer and I realized what Saturday's date was the 22nd, 3 months since Lilly was born. It just hit me, I'm getting used to that happening as it is happening more often since she passed away. I tried to sit at my desk and focus on the task at hand. I knew I had to get up and go have a cry. And I did, and felt better after I let it all out. It was a good cry. I ended up also hunting down a bible and opened it randomly and came across Psalm 8. It was very comforting to read. I was reminded of how powerful God is and I had chosen to lean on Him during my difficult moment at work and I felt comforted.

What also was very comforting is that everyone who saw me in tears just let me cry. No one tried to talk me out of it. Not one person made me feel ashamed. I cry now as I type this as that means so much to me.

I cry cause I miss Lilly so much! The holidays and special occasions and milestones in my life, as well as the ones Lilly might have had will always be difficult.

I want to recall a memory I have of Lilly. I would love to share the first moment I saw Lilly open her eyes. It was after my husband and I had given Lilly her first and only bath. My husband was doing most of the work as I was still recovering from my recent c-section. I watched over her as he went to grab Lilly's blankets, she was wearing her pink outfit and she opened her eyes all the way and looked right up at me and just stared at me. The moment felt like it lasted for so long, I couldn't look away. It was almost like we were frozen in time, just the two of us. She was so beautiful. I felt her looking at me and studying me, almost like she was trying to memorize my face. It felt like she wanted to see me and was really looking at me. Keep in mind they say anecephalic babies can not see. I believe Lilly saw us. She opened her eyes a couple of times throughout her life, but that moment is so special to me because I felt very connected to Lilly. I talked to her and told her I was her mommy even though I felt she knew my voice, she knew me. I will never forget that moment. Its bittersweet as I cry trying to recall this moment so that I can share it with each of you. I miss her so much! I love her so much!

Friday, May 21, 2010

Threads of Hope-Pieces of Joy 4

To read previous posts on Walking With You, please click here: Walking With You.

Walking With You is an outreach of Sufficient Grace Ministries, led by Kelly Gerken. We are a group of mothers who have lost a baby or child. We gather together from different places on our journey, each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.

This lesson is entitled "Why Me" and talks about anger. I thought this lesson was perfect in timing and very appropriate to the anger I've been feeling lately. That being said, I am going to jump right in.

I do not like to feel angry, and I really haven't felt angry from diagnosis day until just recently. My anger is not directed at anyone, because I feel there is no one to direct this anger at. That makes it even more frustrating at times. Its not an emotion I feel commonly along with my grief. I feel that anger can consume us and take the best out of us if we let it. And though I have allowed myself to feel this anger, I try not to let it affect my daily life or the people that are in my life. I feel if I do not allow myself to feel all emotions, anger included, and talk about it then it will destroy me. Bottling it up inside, will not get rid of it, I feel it will just fester and feed into itself and just get stronger, therefore my venting about it is my release.

Ephesians 4:26-27- I love this verse. I feel it confirms how I feel about anger. I feel what makes it wrong is how we handle that anger; our actions in regards to our emotions. I feel causing harm to others because I am angry would not be right. Feeling the anger itself is not wrong. I feel I've already expressed what I'm angry about in regards to what were missing out on by Lilly's passing. It is unfair, but I do not want the anger to consume me, and I would feel worse if I took my anger out on anyone as no one is to blame for my anger.

I have not been angry with God. I don't feel that He caused Lilly to have anencephaly. I do not feel He was punishing me, because that would mean He was punishing Lilly, and I do not feel that was the case. I have felt Him alongside me this whole time as well as all my life. He is and always will remain the same God I've known all my life. I have thought about and felt guilty about things I could have done differently. In the end I know that no matter what, this was meant to happen. Lilly's time on earth was meant to be as it was. I feel also that when we as God's creations hurt, that He weeps with us. His heart breaks with us, each and everyone. I do not forget that God too lost a child. He sacrificed his own child for the sake of man.

From time to time I am angered by those who try to talk me out of my emotions at the time that I am feeling them. I understand their intentions are pure and they are struggling with the fact that they can not stand to see me in pain. Most times I just want to feel what I feel, whatever emotion it is.

I am fortunate in that my husband has been very supportive of how I am dealing with my grief. While he and I are grieving in different ways, he understands and is so willing to listen to me talk about my grief and our daughter Lilly.

In the end the anger is the one emotion that fades away easily.

Monday, May 17, 2010

I'm Angry

I do not want to associate bitterness, anger, or animosity with memories of Lilly. Usually I'm pretty good about this. Unfortunately today did bring memories of incidences I wish had not occurred. And this is the third time since Lilly's passing that I have felt this anger. Granted I realize that it was a very emotional time for all of us. Let me repeat FOR ALL OF US, myself included. I really wish something had happened but it didn't work out for reasons that I to this day do not understand. Maybe for me to have something to be angry at, as I really do not know what to be angry about. I am trying not to be upset because the big picture is despite anything that went wrong, it should be easily forgiven, because we got so much more time with Lilly than was expected. And this feeling is rare, but it happens and today I feel the need to vent. It is just when I am angry that I can not see past the anger. I just want to be angry.

Eventually rationale sets in and I am calm. Just not at this moment. It just really upset me. I feel it would be wrong to betray any confidences just because I am angry, therefore I won't go into any details. I realize that it may seem rather petty being that I got to take Lilly home so how dare I get upset over such trivial things. I guess I am upset because I felt somewhat robbed of this particular desire. As much as I feel that this wasn't fair. It was more unfair that my baby girl was not going to live long.

She was alive that's what mattered most in those moments, all six of us were here together for a little while. In the end everything came together and it worked out. And being angry doesn't solve anything or change anything. Do I wish certain occurrences had not happen, of course. But nothing will change it and the BIG picture is Lilly was here, regardless of how long. She was here and a part of us all.

I do not forget this. I have made it a point to go with how I feel so I will say for the time being I am angry. Who knows how I will feel seconds, minutes, hours, days from now. But right now I am angry. I feel I have a right to be. I realize plain and simple, I am just angry.

Sunday, May 16, 2010

Stories Relayed to me on Lilly's Birthday

I learned yesterday that there were 4 students in the room during my c-section. I am used to the students because my Dr's office usually has them and there actually were a number of them who measured me and Lilly and took her heart rate before my Dr. even came in the room. I don't mind at all. I hope they got a lot out of their experience both from watching the c-section as well as the experience of meeting Lilly, a baby with anencephaly. I was in and out of it due to the nitrus during the c-section so I missed Lilly's first cry. I did get to hear her cry and coo later so I am ok with missing it. I got to carry her for 9 months so its nice that my husband has a memory that I can not share in. I love hearing the story of how she shocked everyone when she came out crying. Michelle, our NILMDTS photographer and Rachel's Gift Companion said she was fiesty when they pulled her out. I said "like put me back in, what are you doing? I was comfortable" and she said "yeah"

Anencephaly babies are expected to be born not gaining consciousness and its so textbook and every one of babies born with anencephaly are unique in what they are able to do. The point is they are able to do a lot more than doctors inform us of. Our doctors fortunately never told us what Lilly would not be able to do, just that she would not live long after birth if she made it full term. We read about their abilities as described on line in medical literature. Through the support groups I am in, I learned that babies born with anen can do so much more than they are given credit for. So I hope that these student doctors will take their experience with them.

The neo-natologist's assistant was pregnant herself and I was excited for her. I even asked her about her baby. I never once thought about how difficult our situation might be for her. I was told she was asked several times if she was ok and if she wanted to leave they would understand. She never left my side. She kept saying she was ok and she went above and beyond for us. I will never forget that. It meant a lot not knowing this, but means even more now that she stuck with us even when given the chance to leave. It would have been completely understandable if she had chosen otherwise, that is why it means so much that she chose to stay. She came the two days after as well to visit with us and the neo-natologist, just to check and see Lilly's progress. They were both amazed by her. My Dr. came the day after Lilly was born and the first thing he told me was that she came out crying. He was amazed too.

We are so grateful to have been blessed with great doctors, nursing staff, and lactation consultant. No one treated Lilly as if they were expecting her to pass away at any moment. And for that I am forever grateful. There are so many happy memories surrounding our time with Lilly, which is what we wanted. Because of this it makes it easy at times to not focus on what we didn't get and what were missing out on everyday. I miss her so much still, but can look back and think about our memories of her or look at her pictures and just smile. I can't help but smile when I look at Lilly's picture. I am so proud to be her mommy!

Saturday, May 15, 2010

Rachel's Gift

I have decided to volunteer for Rachel's Gift. I want to help other mothers who are going through this bittersweet journey. This organization was founded by a mother who lost her baby due to a car accident in 2006, seven weeks before her due date. For more information on this organization please click here. There is also a link on Lilly's blog under the "Click Here For" section.

What the organization does is offer companionship to grieving mothers and families who are suffering the loss of their child. They also offer a box full of keepsakes and grieving information. Our NILMDTS photographer Michelle is a part of Rachel's Gift so I had the pleasure of receiving the services offered by Rachel's Gift.

I am a little nervous. as I don't take volunteering for Rachel's Gift lightly at all. I only hope that I can help others the way that Rachel's Gift helped me. The keepsakes we get of our dear children are an amazing comfort for as much as they can be of comfort with the loss of a child.

Friday, May 14, 2010

Our Support System begins

I realized that when I posted about D-day that I failed to acknowledge the support we had that day and the days following. We did call our coworkers to let them know our news as they knew this was the appointment we would be finding out the sex of our baby, and to see if the AFP levels were just the result of a very common false positive. They were expecting a phone call with the news. I called and my coworker Pam had picked up. I cried while giving her the news and I remember her words "Oh, Elena I am so sorry" as we hung up she told me she loved me. That meant a lot to me.

Our families of course have also been such a great support. But as we live away from both our parents and have no family close by (other than the friends and coworkers who have now become our family through this journey) it was a great comfort to know we were not alone. That night Pam and Lynsey came by with pizza and sodas and pasta for dinner. The office bought us dinner for the evening. It was so unexpected, and greatly appreciated. I tear up as I type this remembering that moment and how much love and support we felt.

I was actually thinking prior to that, that I wasn't fitting in at work and I was struggling with that. I can't say that I feel that way now. Not even a little. Everyone has been so supportive and awesome.

I am not one to ask for help or even accept it when it is given, but being surrounded by such loving and supportive coworkers, I have learned to do just that. Even more so with having had Lilly and losing her so shortly after she was born. I always felt ashamed at accepting help, but I realize that just as I feel good when I help others I must allow others to feel that good in helping me. I can't keep all that happiness for myself. I learned that from my supervisor and angel here on earth Sheila.

I was already off the rest of the week (for no particular reason) so it worked out for me. I needed that time. My husband's job gave him the rest of the week off to be with me. My mother-in-law and father-in-law drove down the following day to be with us. Just to be with us. It was an amazing day. They may not have felt like it, but just being there helped us. We just hung out. The subject only came up once and that was fine with my husband and I.

That Friday I met Lynsey and Pam for lunch and they delivered to me groceries to take home. The office had come together to buy us food for the weekend. I can never repay their kindness, but I am forever grateful, overwhelmed, and humbled by their generosity.

They have gone so far above and beyond any support I could ever imagine from friends, family, coworkers. There is a special place for each and everyone in my heart. They also shared my hope while pregnant with Lilly. And they share my faith in God almighty.

The support of our other children was amazing too. It still is to this day. After we got closer to home my husband and I picked up the new Tinkerbell movie and went to get the kids. I just wanted to be with them. I needed to be with them.

We are so fortunate and blessed and continue to be as my coworkers and family and friend still are constants in their support. Its not as strong as in those moments, and that gets difficult at times. In the end I know they are there for me as they always have been.

Thursday, May 13, 2010

Threads of Hope-Pieces of Joy 3

To read previous posts on Walking With You, please click here: Walking With You.

Walking With You is an outreach of Sufficient Grace Ministries, led by Kelly Gerken. We are a group of mothers who have lost a baby or child. We gather together from different places on our journey, each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.

We had known that Lilly's time here with us would be limited. I was on IF mode until she was gone from our world. I still have hope, its just a different kind of hope. My initial response the moment Lilly went to be with Jesus was comfort and relief. The last couple hours she was alive were difficult. She may not have been in any pain, but seizures are very uncomfortable to watch. I could not stand the thought of her being in any pain, I wanted her to be at peace. I told that it was ok if it was time for her to go. I told her "Lilly, its ok, you can go" So when she went to be with Jesus, I was at peace.

I do not blame God, nor am I angry with Him. I cannot be. Everything surrounding Lilly's life was positive and good. God is positive and good. I do not wish to associate any animosity or negative feelings with Lilly's life because there was so much good that came from her short time here with us. Getting angry at God will not bring my baby girl back to me. And I need to be able to lean on God, I cannot do that if I am angry with Him. Now I just need to hold fast to the hope that I will one day be reunited with Lilly in Our Lord's Kingdom. I feel God blessed us with Lilly. I cannot overlook the fact that He has bestowed many blessings in many forms throughout the course of my life. I feel to reject Him means that I reject my daughter's spirit, and the hope of one day joining her when the time is right.

I have not felt the denial stage of grief. That may be partly due to knowing that our time with Lilly would be limited prior to her being born. I feel I can not deny our loss, because to do so would be to deny Lilly and her existence. I was telling my husband just this morning that the pain is worth remembering her. If to be pain free means forgetting her and not thinking of her or memories I have of her, however few they may be, I welcome the pain. I love her that much that I am willing to suffer this lifetime of pain in missing her just to remember her.

The hardest thing to face about my loss is I can not hold her whenever I want to. The milestones I'll miss out on with her. From her first steps, to her first day of school, to graduation, and her wedding. I can not hear her voice change from cooing sounds to sentences. I'll never know what she would have looked like throughout the stages of life. I'll always wonder, but I'll never know.

I have to be honest. Though I know that it was not something I would have purposely done to any of my children. And I would tell another mother going through this same journey that it is NOT her fault. I can not help but blame myself from time to time. Ultimately it was MY body that failed Lilly whether purposely or not. However, I realize that this does more harm than good. This will not bring Lilly back. This will only bring me down. Feeling sorry for myself is not going to make this any better. I am ok with taking the blame, however, I am working on forgiving myself. Its not something I want to be talked out of when I feel this way. Only on my very difficult days do I blame myself and allow myself to wonder, what it was I did. Even though I feel VERY STRONGLY that no mother who had a baby with anencephaly is to blame. I just can't practice what I preach in this area. Its fresh and someday I will be better about not blaming myself.

I thank God for Lilly and the time He allowed us to have with her. I praise Him for allowing me to be chosen as her mother. To carry her, to love her, all my life. I will cherish Lilly forever. Lilly was nothing short of amazing! She did so much in her short time here on earth. She was at peace when she was here with us, just enjoying every breath and every moment. So content and peaceful. And happy!!! The picture I have under the heading of her blog truly captures her essence, who she was while she was here (thank you Michelle)!

I do get sad about missing Lilly, very sad. But when I see her picture or think of time I spent with Lilly I can smile and cry happy tears.

Monday, May 10, 2010

My special day

I just wanted to post about my first Mother's Day without Lilly here with me physically. I say "physically" because I believe she is in Heaven and is always with us. Being back at work, I had been too busy to even think about Mother's Day. I didn't realize it was this Sunday until last week when someone approached me and said they were thinking of me. There had been reminders everywhere, I just didn't retain that it was this Sunday.

I woke up to breakfast in bed. My husband cooked pancakes, put them in the middle of the plate and used slices of bologna to make a smiley face (the pancakes were the nose). I wish I had taken a picture, but it is forever imprinted in my memory. Each of our children brought part of the breakfast in. One brought the plate, the other my juice, and finally my butter (to put on the pancakes). My hubby said he would leave me to put butter on my pancakes cause he knows how I am about butter (I put lots of it on everything! so healthy I know).

It was a day spent relaxing and I wasn't allowed to even clean. Just rest and spend time with my children. I did leave to spend time at the cemetery where Lilly's body is buried and I prayed the rosary. It was so peaceful and serene. I had a gift card for Starbucks (thank you sweetie!, you know who you are) and I ended up buying two frappacinnos (they were half off for happy hour from 3-5pm til the 16th of May). They ran out of whip cream so I got a free cookie instead.

I know that most thought I would be sad this day...but Mother's day was just a reminder that I am blessed to be a mother to FOUR wonderful (each in their own way) amazingly beautiful children. I could be sad that I wasn't able to hold Lilly or pick her up or sit or play with all four children. But I just couldn't see what I didn't have, because Lilly was with me yesterday, and always. Just not in the physical sense. Sometimes of course that is not enough, but sometimes it really is enough to know that she is still with me.

Sunday, May 9, 2010

Happy Mother's Day

This is my first Mother's Day without Lilly and I have a peace about me today. I spent the morning with my 3 living children and this afternoon I plan on going to the cemetery to spend some time there. I feel blessed to have been chosen to mother four wonderfully amazing and beautiful children.

I wish a Happy Mother's Day to all the mommas out there. Those who already have children, those who are expecting, those who are mothers to those far away and in Heaven. May your day be blessed and peaceful. Know that I am thinking of you and praying as always for you ladies.

love and prayers

Saturday, May 8, 2010

Healthy Grieving

I think its quite interesting when people act like my grieving is abnormal or unhealthy. I'm not going to perfect living with my grief overnight. I may never perfect it. I think handling the grieving process in whatever way anyone choses to handle it is healthy for them. Its what we must do to survive our loss. And that may be different from one person to the next.

I have two choices I can let Lilly's death destroy me or I can let Lilly's life motivate me. I've chosen to let her life motivate me. That does not mean that I do not get overwhelmed with saddness from time to time in missing her. It also does not mean I don't have moments that are so full of laughter and enjoyment.

I can't predict my moods and I'm not going to force them. If I'm sad, I'll be sad. If I am happy, I'll be happy. I'm living in the moments. I believe ANY way of how grief is handled is healthy or crucial. However anyone wants to purge their sad overwhelming emotions is up to them. I really think anyone who is going through this should not be judged.

Lilly's life meant so much to me and I feel as long as I am functioning and doing things that need to be done and enjoying life that is ok. Just because I am grieving does not mean that I am not living or that I am not grateful for all the wonderful things in my life. I am grateful for having had Lilly. Do I wish I could hold her, feed her, hear her voice, of course. But I can't and that makes me sad, but it doesn't mean I'm hopeless. I am also grateful for my wonderful husband and my three living children. They amaze me everyday and make me laugh with the silly things they say. I love playing with them and spending time with them. I am grateful for all the wonderful friends and coworkers in my life who have all become family. I am grateful for all the wonderful new friends I've encountered through my journey. I am grateful for God's love and kindness and mercy. I am grateful for all the blessings God has bestowed upon my life.

Grief is powerful, learning to deal with it may take a lifetime. Its a different pain and should not be held as another life obstacle to "get over". This is not trivial. Were talking about my daughter's life. Its the life of a child, a life of someone dear. I've lost friends and family members to death before is a different pain than losing a child. We really mean it when we say we don't wish this on our enemies...its that painful and that powerful. Its not the same as someone having a "bad day". And yes their feelings on what they are dealing with is important as is what I am going through is important to me.

People don't know what they've not had to endure. I don't use Lilly's death as an excuse. So being told to not use it as an excuse is in a way diminishing the importance of her life. Even going through a stressful day like I had yesterday no way compares or takes the place of losing my daughter. The stressful day was replaced by knowing that its not as bad as that and also my day was put into prospective.

Again, I am not asking for you to feel what I feel or even understand it on my level or any for that matter. My grief is my own and I don't want anyone to share in it as I don't wish this pain to be inflicted on anyone. Only those that know this pain unfortunately will be the only ones able to understand what I am going through. I am just asking for acceptance. If I'm not "over it" yet, what does that matter to you. Its not doing anything to you. and its not hurting my life. I still enjoy things and laugh. but I also cry and miss my daughter.

But I don't feel that I am depressed and even if I was that is to be expected.

As far as motivation, I've gotten better at keeping our home more organized (some days are better than others with 3 rambunctious children, 2 of which are toddlers). I've also recently got into cooking more often. I've also with the lovely support of my wonderful boss started working only 6 hour days. Which means more time to spend with my living children and hubby whenever he is off :) Life is short and I want to make every moment count as much as I can. Time with each person that I love is precious. I think we tend to forget that with how busy we tend to get with the hussle and bussle that life brings. It so easy to not sweat the small stuff anymore. In the words of Hannah Montana "Life's what you make it, so let's make it rock" I apologize for my silliness but I'm a kid at heart myself :) I miss my daughter but I know she's in heaven watching us and is always with us. And just because I enjoy life does not mean that I miss her any less. I will always love and miss Lilly Elizabeth no matter what happens. I am choosing to let her LIFE motivate me.

Wednesday, May 5, 2010

Link to Giveaway

Wishing baby Jenna Belle a Happy 1st Birthday in Heaven.
Jenna Belle spent 13 days with her mommy and daddy. Please visit her mommy's blog today leave her your kind thoughts or prayerst. Franchesca has opened her heart and is giving away a few prizes. If you want to create a blog or want to dress yours up, please stop by sometime today by clicking on the link I have provided below. She is a very talented and sweet person.

Thank you Franchesca!

Tuesday, May 4, 2010

Threads of Hope-Pieces of Joy 1&2 Walking With You Part 2

To read previous posts on Walking With You, please click here: Walking With You.

Walking With You is an outreach of Sufficient Grace Ministries, led by Kelly Gerken. We are a group of mothers who have lost a baby or child. We gather together from different places on our journey, each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.

4. Where is my child now?

Matthew 18:10 and 19:14 state it true. I believe that Lilly is in heaven with Our Father. There is no doubt. I hope to one day join her. I like to imagine she's with all our loved ones that have passed, playing with the children that our families and friends have lost. I believe all who have died will one day be with the Lord.

In II Sam 12:15-23 I can relate to how David's point of view while his son was alive and after. I completely agree when he said "the Lord MAY be gracious to me and let the child live". I always believed God could heal Lilly, not that He would, but that He could. I really needed to read this scripture today as I have not been taking very good care of myself as far as eating and sleeping go. I realize that nothing I do or don't do is going to bring Lilly back. There is no need to suffer more than I already am.

5. Can I ever understand WHY?

I know that I will never understand why, which may be the reason that I really don't ask why. Dwelling on the why's will not bring Lilly back to me. She is with our Lord and I am ok with that. God needed her. Lilly was here only for a short time, whatever the reason may be is not for me to fully understand or question. I could go in circles all day long trying to wrap my brain around something I don't believe I am meant to understand. It is what it is. This was the path set before my husband, my 4 children, and I. Who am I to question Him.

6. How can God help me deal with losing my baby?

I believe God can comfort me, if I let him. I just need to keep my heart open to Him as I always have and let Him wrap His comfort around me. I have felt His comfort in so many ways throughout my life especially more so recently. I believe He also has and continues to send people into our lives for comfort. God did not put us here alone for a reason. He wants us to take comfort in each other and to help each other and to accept help. I've had to learn recently that it is ok to lean on people and to accept offered help, and I'm slowly learning to ask for it myself without feeling ashamed.

I don't know if you have ever heard the story of the three men who were stranded in the ocean and they pray to God for a rescue and a boat comes along and one of the three men get in. The third man says "No, my God will save me". Next, comes a helicopter and the second man gets in, but the third man refuses again. Finally the man ends up dying in the ocean and when he comes before the Lord, asks "Why did you not save me Lord" and God tells the man, "I tried to answer your prayers, I sent a boat and a helicopter" So God may answer our prayers in ways that we may least expect. I believe God is in everything around us and working through others as well as through myself.

I really would like for people just to accept that this is the person I am now. I am and forever will be changed from losing my daughter. I don't need to be "fixed" or "cheered up" I would like to just be accepted. That my grief is a part of who I am now, and while it may consume me from time to time, to just allow me to feel every emotion. That is comforting to me.

I am also comforted by others, when they talk about Lilly. It makes me so happy to hear her being talked about. I want her to always be remembered. We want her memory to live on. We want her life to be bigger than her death.

Saturday, May 1, 2010

Lilly's name

Thank you so much from Chris at Treasure From My Heart. I love it!!! Please click on the link to see the poem that goes along with this picture. Its also the poem we placed on the back of the prayer cards that were handed out at the Lilly's graveside service.


Related Posts with Thumbnails