The Diagnosis, Trisomy 21

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Our first daughter was born with an unbalanced translocation. Extraordinarily rare. Not much medical data on children born with this chromosomal imbalance, because most of these children are miscarried or stillborn, never making it to a live birth. But, our daughter did. And, she lived a beautiful life for 4 1/2 years, before a seizure, that came out of nowhere and lasted 2 hours, took her from us.

Not long before what would have been our daughter’s 5th birthday, her first birthday since her death, we found out we were pregnant. Two days after her birthday, it was clear that I was miscarrying the baby. I took the miscarriage very well, I think so anyway! It was nothing like losing a 4 1/2 year old child. I understood that it was my body’s way of letting go of a pregnancy that wasn’t healthy. I appreciated my body’s biological knowledge and competency.

A little less than a year later, we were pregnant again. I was full of hope. This time, I was nervous, so darned nervous, but still full of hope. This time it FELT different, like this baby was here to stay. We conceived spontaneously, without IVF. I wanted the prenatal blood test to see if this baby would have an unbalanced translocation. I secretly wished that if he/she did, my body would miscarry on it’s own.

In the meantime, during all of our conversations over that year about having more children, we joked. We joked that we wouldn’t know what to do with a typical child. We wouldn’t know how to give a child medicine if we didn’t have a g-tube. How could we sleep at night without a pulse-ox monitor?!?! We joked that we would be way more qualified to have another, special child, like a child with Down syndrome, than we would be to have a typically developing child.

When the blood test came back, the genetic counselor said something to the effect of, “The blood test is negative for an unbalanced translocation, BUT…” and I finished her sentence, “the baby has Down syndrome”? “Yes”. The baby had Down syndrome. And, quite honestly, I have no idea what the lady said after that. I don’t know if she said she was sorry, or if she had anything encouraging to say. I did finally ask if we were having a boy or a girl, to which she happily replied, “it’s a girl”!

I do remember, quite vividly, the counselor being floored about the test results. She didn’t think I was THAT old that Down syndrome would be so likely, especially considering I already had a child with a genetic condition and a miscarriage…you’d think there was a fully healthy egg in my body somewhere and she was surprised this wasn’t it! So was I, sort of! Listen, she didn’t say it that way to me, but that’s pretty much what she meant. She recommended an ultrasound to just be more certain of the diagnosis, and then CVS or amniocentesis to be positive, before making any “decisions” about the pregnancy. She wasn’t negative, but she wasn’t exactly positive either. She was perky and upbeat when delivering the news, so there was that. And, she said the test was 99% accurate.

I was scared. Scared out of my mind. I got an appointment ASAP! My mom went with me. We saw a doctor who had horrible bedside manner, who we never saw again! He said that the blood test was pretty accurate, 90 something percent, and with the ultrasound marker of the thick nuchal fold, it put the likelihood of Down syndrome up to 99%. The only way to be truly certain would be invasive testing. He said that he would only recommend CVS or amnio IF I was considering terminating. If I wasn’t considering terminating, then I should think the facts of the blood test were enough of a reason to think my child would have Down syndrome.

And, I don’t remember all of his exact words, but I can say that he was matter of fact, and he gave me the feeling that he thought I should terminate the pregnancy. He said nothing positive. He didn’t explain how he would monitor a pregnancy like this going forward. He didn’t educate me on the risks and/or complications that might present during the pregnancy. He didn’t share any educational material or resources about being the parent of a child with Down syndrome. He said NOTHING that was positive. He didn’t even share one of those stories, which I hate, but it would have been something, “THEY can grow up just fine, some even work at grocery stores”.

I was heartbroken.

Here is the thing, you’ve probably seen it online in articles or video clips, the worst thing to say when a Mom/Dad gets a Down syndrome diagnosis is, “I’m sorry”. But, the thing I felt the most, as a Mom who just received a Down syndrome diagnosis was, sorry. I felt sorry, sad, disappointed, angry, scared. And, my doctor didn’t do anything to allay any of my fears or boost me up with some positive feelings.

I’m a fight AND flight kind of girl.

I called an complained about the doctor (fight). And, I left that practice (flight), well, right after I discussed the things in a bit more detail with the genetic counselor. I decided that I wanted to KNOW. For. Sure. Not because I wanted to terminate my pregnancy, but because I wanted to KNOW how to prepare. You see, when Delainie came into this world, we had no idea that she would have any genetic issue. We were pretty much reactive for most of her life! I wanted to be proactive this time. I wanted to know if my child had Down syndrome, and if she did, I wanted to research the best doctors, get the best monitoring and make the best plans. I couldn’t do that if I didn’t really, KNOW. At least, not in my opinion.

So, I was referred to Maternal Fetal Medicine at JHU. I loved the doctor, nurses and sonogram technicians there. They always made us feel like we were just having a baby, a baby that might have a few hiccups along her health journey, so we’d need to keep close watch to help her if that happened. I had the CVS testing done. For me, I felt the risks were minimal. From the research I did and the discussions with the doctor and genetics, the likelihood of miscarriage was low, and in most cases, probably likely due to the fetus’s lack of strength and ability to even make it to term to begin with. So, I prayed. I prayed.

We went on a little beach vacation after the CVS test. I tried not to think about it. I tried to lift my heart up to God, to my Delainie in heaven. A few days after we got home, I got the call from the doctor’s office. Good news, the baby didn’t have an unbalanced translocation, she in fact, has my balanced translocation and she has an extra 21st chromosome, Trisomy 21, Down syndrome. I told the genetics counselor that I understood, I had no questions, I made my next appointment and I called my husband. I couldn’t reach him! I drove to my parents house and they opened the door and I cried! I cried. I talked to my husband on the phone and I have no idea how he took it, because I was too busy feeling sorry for myself.

I was sorry. I was that thing you are not supposed to say to a parent who just received a Down syndrome diagnosis. And, I think it’s because of my history. All I could think of is, “I cannot lose another child. I cannot live in hospitals again. How will I fight this world for her, I am still exhausted from my previous fights”. My sorriness had nothing to do with her and everything to do with my fear of loss and post traumatic stress.

I am not going to lie, I considered ALL options. I listened to the option about terminating the pregnancy and the option for not terminating. For me, I can only make decisions once I know the choices, I need to know them in order to feel 110% confident in my decision, even if I know the decision that I will make before the options are presented.

I thought that if we could see she had no brain or heart or was destined to death, through the close prenatal monitoring, I would consider, not necessarily would I act, but I would consider termination. But, to terminate just based on her diagnosis? NO. NO. NO. My husband and I were in agreement. We lifted our faith up from the pits of hell and prayed that this was all part of The Plan and we were taking steps for the future of our beautiful family.

Still, my biggest fear and obstacle? The fear of having another child with medical complexity and losing her. I did not think I could lose another child whom I grew to love with every fiber of my being. It would probably kill me if it happened again. And, my faith in God at that time wasn’t very strong at all. I didn’t care about cognitive delays. Good grief, babies who seem “typical” at birth end up having learning disabilities, among a myriad of other challenges, medical and mental.

Here is the thing, short of doing IVF with genetic testing and picking out your perfect little zygote, and even then, you can’t know what the future holds for your child, medically or mentally. We get what we get. And, I believe, more than that, we get what we are supposed to get.

I used to say, if God asked me, “Kelly, do you want this healthy child or this child with a lot of obscure medical issues”? I would have said, “the healthy child, God, thank you”. But, I am so glad he never asked, because I didn’t get to choose and I am grateful, because I would have chosen wrong. I was gifted Delainie and lived 4 1/2 beautiful years with her, I will always thank God for that wisdom.

This time, I got to choose. I KNEW our Sweet P would have Down syndrome, and I chose her. We chose her. God in his infinite wisdom, once again, picked the perfect child for us.

 

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Finding Joy After Loss

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It took a while for us to get pregnant with our daughter, Delainie. Not as long as it takes for some people, but it seemed long to us. In May of 2011, we welcomed our beautiful girl, Delainie, into this crazy world. Little did we know what that life would look like. Sure, we dreamed and had visions of our life prior to her birth, but once she arrived, all of that went out the window and we were in survival mode with her medical complexities.

With her special needs and medical fragility, we planned that she would be an only child. We had no desire to add to our perfect little trinity. We loved our life, complex and scary as it was, we loved it with every breath we took. We were so caught up in that love, we never saw Delainie’s death coming. It happened so quickly, ironically, when we got comfortable living in the uncertainty of this life.

Not long after her death, I knew I wanted another child. I felt it with every fiber of my being. I wasn’t done being a Mommy. We considered in vitro, but, after talking to doctors, it appeared that it would be highly unlikely to give birth to another child with Delainie’s chromosomal anomaly. What would be likely, is that we would miscarry a child with Delainie’s chromosomal anomaly. And, that seemed pale in comparison to what we had just gone through, so we thought we could handle the risk.

In May of 2016, we were expecting! It was so exciting, because it didn’t take as long as it did the first time. Shortly after finding out we were pregnant, I started bleeding. It was Delainie’s birthday. The first birthday since her death. I was a basket case. How could I be losing the baby on that day of all days?? I went to the doctor, he said it was too soon to tell, but it looked like cervical bleeding, which was not unusual.

We celebrated Delainie’s birthday with our friends and family, flying kites and using bubble machines to put on a little earthly razzle dazzle for her heavenly enjoyment. A few days later, I knew that I was not going to get to keep this new baby. I was miscarrying. I woke up in the morning, turned to my husband and told him that I thought I was losing the baby. We cried for a few minutes, and then we got up and went on about the day. It was Memorial Day Weekend, we made side dishes and attended our annual Memorial Day party.

I was sad, sure. But, not devastated by the loss. I understood that my body was not allowing this baby to come into the world because he/she wasn’t going to be prepared to handle the world. And, I was okay with that. Losing a pregnancy at 6 weeks, for me, was nothing in comparison to losing my 4 1/2 year old child.

I went to the doctor, who confirmed the miscarriage, and I asked, “can I go on vacation at the end of the week”? She said, “yes, do as you feel able to do”. I told her that I just wanted to put this in my rearview mirror and move forward. I wasn’t stuffing my feelings down, I wasn’t denying the gravity of my loss. My perspective on the loss was just different from what most people might experience. It was pale in comparison to the loss I experienced with losing Delainie. I was still grieving that loss, and would be for the rest of my life. I had no room in my heart to add grieving for the loss of my pregnancy and truly, no desire to give it that much attention.

I went on vacation, enjoyed that time with girlfriends and I felt good. When I got home, my husband and I discussed that we would consider in vitro for any future attempts at growing our family. The process of invitro is grueling! After going through the initial work ups and testing, we were ready to schedule the start of the procedure. But, not surprising, we found out that insurance would not cover it after all. Thousands of dollars for something that was not guaranteed. My body and my mind and our wallet would go through the rigorous process of invitro and we had no clue if we would end up with a child at the end of it.

So, back to the drawing board.

We decided, since it seemed that the possibility of having another child with an unbalanced translocation was minute, that we would give spontaneous conception a try again. When we found out we were pregnant this time, there was a lot of fear for miscarriage. As the weeks went on, my heart started to swell with excitement. We knew we would opt for prenatal blood work. We wanted to know if this baby, though unlikely, had the same genetic issue Delainie had.

The good news was that there was no indication that the baby would have an unbalanced chromosome.

The news we didn’t exactly expect, was that the baby had a very high likelihood of Down syndrome.

I was beside myself. I did not think I was strong enough to be the parent of a second child with special needs and medical complexity. I couldn’t bear to worry about my child dying due to medical issues nor could I survive living in hospitals again. I was scared.

I wondered what I had done to deserve this diagnosis. Why would God punish us and make us live through fears of losing another child or God forbid, let us lose another child?

My husband, an extraordinary man, said, “Maybe it isn’t about what we did wrong, but everything we did right…that’s why He is giving us this child”. And, in that moment, I fell in love with my amazing husband all over again. I knew he was a better human being than I could ever be and I was blessed with him by my side. And with time, I began processing the diagnosis, researching and lifting my broken heart up to faith in God’s plan and I prayed. I prayed, daily, that I would be strong enough.

Fast forward to the day our Sweet P was born. My world exploded with joy! I couldn’t believe she was really ours, that she was in my arms, that I was a mom again. It’s been 3 months. The first days and weeks are a blur, which I am sure most new parents would say!

Our Sweet P has a large hole in her heart. Initially, I was scared out of my mind about it. We have a lot of reference points with medical issues due to Delainie, but one area we weren’t familiar with was cardiology. We are getting familiar with it now!

There is a lot of fear, but it’s different than it was before. There are many people who have walked along this journey ahead of us, paving the way. I am concerned about upcoming heart surgery, but we are not alone. Through the DSDN group, I have found a tribe of “heart warrior mamas” to lift us up, stand by our sides and give us strength. I can also support them with what I am going through now and with what I have been through with Delainie.

The most unbelievable part of the journey thus far, is that we have found joy again. I never thought it was possible. This joy is unlike anything I have experienced before. With Delainie, I experienced the purity of joy. With Sweet P, it is unbridled, euphoric joy; and that joy has filled up the cracks of our broken hearts. Our journey isn’t likely to be easy, but it is destined to be wonderful.

 

 

 

 

The Gift In Letting Go

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It has been just over a year since we lost our beautiful daughter. And, I would have thought the one year mark would bring a feeling of relief or success having survived so long without her. But, it has not.

In fact, the time has brought a fresh pain, a new and different type of ache in my heart, in my soul. It has brought the reality, of having to live the rest of my life without her, front and center. That pain is like a piercing stab that hits me frequently, often when least expected.

And, with this time that has passed, my mind wanders and dives deep into rabbit holes, summoning up horrible, ugly visions that burn into my mind. I need to make a continuous and conscious effort to keep my mind from going to these places. And, many days I am successful. Which, I am proud of. But, some days, when my strength is waning, the rabbit hole just sucks me in, refusing to let me go and I am here to tell you, it is no fairy tale.

During one of these moments, where I replay the final days of my daughter’s life, I had a thought, that started as the type of thought that takes me down the rabbit hole. But, this time, the rabbit hole didn’t fully suck me in.

As I was thinking of the night where she was last herself, where I watched her small body go through the most horrifying things, I thought, “what if she had died right there, in that moment”? And, quite honestly, I am floored that I had never truly played that scenario in my mind, until recently.

I said that events and decisions during the four months before her death, unknowingly, made things go the best way a tragic situation could go. I knew it could have been worse, I didn’t exactly know how, but I knew it could have been worse. Somehow, every word, every decision, every struggle, every roadblock and every break we got, during those four months, put us in the place where we were able to receive the gift of Time. Time to say goodbye, time to come to acceptance (for what that was worth in the midst of tragedy) with the fact that we were not leaving that hospital with her.

It was a gift.

But, what I never truly thought about, in harsh detail was, what if we had not received that gift. What if, I watched her die in front of my eyes, alone. What if that was it? What if, while I watched her body, that was violently out of her control, I saw death take every bit of her essence away? What if, while I watched the medical staff swarm around her beside, all working to save her, they failed? What if, the Pope hadn’t shut down the City of Philadelphia, keeping us hospitalized longer than necessary and we were home with her? We would have been ill-equipped, even though we were pretty fully equipped, to fight the horrifying attack on her body that night. We would have done everything, like so many times before, to keep her with us, but, despite our efforts, her body would have given out.

How would I have survived losing her in any of those ways? I know the only reason for my survival is due to the gift of time we received in those final days. But the truth is, the only reason I survived is because I chose to accept the gift I was given.

But, let us be honest, terribly tragedy, like our reality or those “what ifs” I mentioned, happens to people. Every day. And, if we are being honest, we all get different types of gifts in tragedy, no matter how the tragedy comes about or the results when it is over. Of course, not all of us recognize, through our grief and anger, the gifts we are given. My tragedy is not your tragedy, my gift is not your gift. But, we owe it to ourselves, to our loved ones, to those we have lost in tragedy, to find our gift and embrace it tightly and survive.

I know, I see, I truly understand, now, one year later, the importance of the gift we were given, in having the opportunity to let her go. I understand how awful those words sound, believe me, “the opportunity to let her go”, but it was a gift. From the moment she was born, we were fearful that she would be taken from us. We believed in her will and her purpose on this earth and we fought for her life at every sharp turn, but we were scared. Every day, every moment we had life and death thoughts running through our minds and they were real. We understood that if we were not on our A game, if we were not ready to make life saving responses for her, we would lose her, in a literal heartbeat.

Every day, life won over death. Until October 1, 2015. And on that day, we didn’t lose life over death in the way we had always feared.

The day she died, our little family was in control, the gift of time gave us that control. We celebrated her life in the way we never had the chance to celebrate it on the day she was born. The day she was born, we controlled nothing; the celebration for a new life on earth was set aside in order to save that new life, the fear and uncertainty weighing heavy on our blindsided hearts. But, the day she died, well, we made up for the fear and uncertainty that kept us from celebrating on the day she was born. Perhaps that sounds inappropriate. But, for us, it was exactly right. On October 1, 2015, we wept (wailed), we laughed, we created beautiful moments together and we snuggled up to her, breathing in her spirit, her essence, her love, letting it give us strength. We gave her our blessing to continue her journey without us. We loved her every second of every minute of her life and then, we let her go.

And the fact of the matter is, she had already let go, well before we did. A few days before she died, she was not waking up from the tragic event, I laid on the bed with her, held her little hands, and I spoke to her in a way a mother should never have to speak to her child.

I said, “Delainie, Mommy and Daddy understand if you cannot stay here with us–if you need to go be with God, we understand. Well, we don’t exactly understand, but we know that might be the plan and we want you to know that we will be okay, we have each other and we will figure it out. We will be okay for you”. One tear, from each of her beautiful closed eyes, rolled down her cheeks, and at that moment, I knew. Her gift, God’s gift, was to let us catch up, as best we could, to the plan, this time around. And I will forever be grateful.

It is my hope that others can find the gifts that are within their own tragedies and that they hold on tight to those gifts; because, I truly believe, those gifts are our life lines.

 

 

 

I Survived Loss. Now I Need To Function.

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For months I have been surprised by my ease in letting things go. I thought it was maturity that allowed me to turn the other cheek in, almost, every difficult situation.

Then, I realized that was not it at all. The experience of losing my daughter tortured my heart, soul and spirit. It broke me.

I was surviving but not fully functioning. There was no spirited Kelly left in me, no fire, no true passion for what I believed in.

Every functioning part of me succumbed to the torture that I endured having lost the most precious gift this life gave me. Somehow, my brain allowed me to physically survive this torture.

I knew the scars would forever run deep into my heart and my soul. But, it was in discovering my newly faded spirit that I realized how hideous these scars truly were and how important it would be to enable these scars to expand, rather than constrict, every inch of length they ran through the tortured parts of my being.

Physical wounds require continuous, superior tending, from the onset, in order for the scars to heal in a way that does not limit physical abilities. My scars are not physical; but, I believe the same principle applies. I do not want my scars to limit me. I need to tend to the wounds before the scars are set in their ways and put continual stress on every facet of my being.

I need not only to survive, but to function in this life. And, if I am going to function, I choose it to be at the highest level possible. The highest level can only be attained by maximizing my capacity for healing and turning my wounds into pliable scars that will expand my being so that I can be open to all that this life has to offer.

As I go forward in this journey, I am willing Strength to join me and travel at my side, helping me to make decisions about when to let go and when to fight. I also will Courage to join me, helping me to act on the decisions I choose. Lastly, I will Faith to stand with me at every turn, helping me to believe in the decisions I make and the actions I take.

Having Strength, Courage and Faith along in this journey, I know I will succeed in raising my spirit from the ashes. I will find a way back to my authentic self, embrace the future meant for me and, when the day comes, I will be worthy to spend eternity with my beloved child.

I am not alone. My child’s energy is always present. Our love was, is and will always be what keeps me motivated.

 

I took a writing class and stopped writing, totally unpredictable.

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It was in March that I decided to sign up for an online writing class through our local community college. I did it because I have always enjoyed writing.  After the death of my daughter, writing seemed to be something that I could pour my heart into without reservation, it helped me as I grieved.

The more folks who read my blog posts, the more I heard that I should pursue more writing and that what I had to say might be helpful, not only for myself, but, for others as well. I do not consider myself a “writer”. But, I like to write. I write the words that come to my mind, travel down and out through my fingertips and onto the keyboard. I write long, loquacious sentences and short, snippy one word lines; I add commas and semicolons everywhere I want, taking liberties like I am an artist who doesn’t care to follow the rules nor cares what anyone thinks about it! So, pursing “writing” in a more professional way, well, that might have been a lofty aspiration. But, I thought I would take the class anyway. So, I signed up for a class on how to get published.

Mistake. Waste of money. Total killjoy to my desire, enjoyment and the emotional elevation I had always experienced with writing. I had writer’s block. Actually, it was worse than writer’s block. It wasn’t that I couldn’t think of anything to write. I just. Did. Not. Want. To.

So, since March, I have not written anything. It was totally unpredictable that a class, which I had hoped would encourage my desire to practice and pursue a skill I enjoyed, thereby bringing me a new sense of gratification, in what had been just a hobby, would render me uninterested in that skill all together.

I have not been published and after that class, I no longer care if I get published. What I care about is that writing has always been the best way that I have been able to express my feelings. If my writing resonates with another, that is great. If it does not, that is okay too. I am in a place in my life where I am just playing it day by day and letting go of the expectations that I have of myself and those expectations that others may have of me.

So, here’s to another unpredictable event, the class did not snuff out my passion for writing all together after all! Let’s hope that this is a blog post that will pop me back up to the place where I once was, the one where I wrote what I wanted, when I wanted, how I wanted and let anyone who wanted read it. Thanks to the Daily Post One Word Prompt, “Unpredictable” that helped catapult me back onto the playing field.
Unpredictable
 

Only A Piece of My Heart Is Left After Her Death

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It has been five months. Five torturing, long months. Five months that have whipped though my life like a stormy wind, quick and stinging.

How I have managed to survive the last five months, I do not know. Honestly. I have no clue.

Some days I consider myself a monumental success because I got up, showered, dressed, fed myself, laughed and put one foot in front of the other until bed time. Other days, I wander around in a daze, half here, half somewhere else. And, still other days, I am a ball of anger that no one can see, but I feel like I might explode at the smallest transgression.

In the beginning, and let’s face it, it has only been five months, it is kinda, still, the beginning. But, in the beginning, I used anything as a reason to wake up and move forward. Meeting someone for lunch, taking the dog out to pee, catching a view of the fall leaves and sunset in the crisp air. But, now, those things don’t even make me tingle with a need or want to get up and move forward for them. I need more.

I need something that brings purpose back to my life. Because, quite frankly, this life is nothing without my child. I have no purpose. And, I know, living life that way, feeling purposeless, for too long, will get dicey.

When my sweet girl died, my heart broke into an infinite amount of pieces. The weight of the pain was not always seen in my actions or on my face; I was functioning considerably well, but my heart was screaming inside. It still is. In fact, I feel like I hear the screams more now than I did in the very beginning. The shroud of protection given by my brain, my body, my family and friends, saved my broken heart from feeling too much at one time.

Now, the weight has been getting heavier and heavier, my brain is no longer activating the shock mechanism, which is basically a protective bubble that allows participation in life with a hefty dose of ignorance is bliss feeling; my body is no longer functioning out of a fight or flight response; my family and friends are back to life as normal, for them. The force of the weight has come down so crushingly hard on the pieces of my heart that most of the pieces have been smashed to dust and they have blown away with the heavy sighs from the pain of reality.

The reality is that she is gone and I am still here. She is fine, but I am certainly not fine.

There is not one part of my life that is not haunted by her shadow. My husband can return to some semblance of life, albeit hard, that is separate from him being a Dad. He had an outside job, that had nothing, immediately, to do with being a Dad. I however, did not have that, and I do not regret that choice. But, I cannot bury myself in work or continue to hone my skills to further my career aspirations. I left my career when my daughter was born. I actually even denounced my desire, interest and acceptance of ever continuing and succeeding in the career path I had before becoming a Mother! I said that my career was, “NOTHING in comparison to being a Mom”. I said, “The desire I had to be the best at my role, develop my skills to continue to grow in my path and with my organization, gain more responsibilities and receive accolades for a job well done was a vain and shallow definition of success”. Yeah. Wow. Pretty harsh. I really loved being a Mom!

But, now where am I? My ideas of success went from fast paced moving, increases in power, financial security and recognition to savoring the moments, giving of myself with no promise or need for receiving, rolling with the punches and creating a life full of beautiful memories while loving every moment of it.  So, what does a successful and happy life look like, now? I have no idea.

The thing is, it’s hard to move forward after a loss. But, you do. Your body, your brain and your support system are like strings and you are the marionette to which they are attached, they help you to move one foot in front of the other. At some point, those strings fall away just like the petals on a beautiful flower, having served their purpose no more. And, that’s when things get weighty, when you have to start thinking about moving ahead towards a destination on your own instead of being pulled there.

Bridges burned from my past and a freaking huge sea of uncharted waters are what remain. It is my choice on how this story moves forward from this point. I need to take the first step, the first real step towards a destination. Then, the next steps, I freaking hope, will manifest ahead of me. For me to follow, along with curves, forks, and choices between paths. But, none of that will exist without the first step.

I resolve, today, to prepare for that first step. In fact, perhaps it is THE first step towards a destination, it is at least a half a step! I recognize that it is time to engage experience beyond my own, beyond my friends and family. I have started seeing a counselor. I think of myself as a personally open and sharing kind of person. I think of my family and friends as my greatest support system. I thought I did not need therapy.

But, come to find out, I do. It is refreshing to share my struggles with someone and know that I am not exhausting those I love with my pain, pain they want to heal but cannot. It is something I look forward to as a practical plan towards improving my overall well-being. With therapy and outside research, I have been working on learning mindfulness exercises, which have already helped as a coping mechanism. And, in the spirit of working on embracing myself, my future and nurturing my mental health, I have decided to take a writing class.

I have survived for five months. There is no question that I will continue to survive. I made it this far. But, beyond that, what continuing to survive looks like? I have no damn clue.

But, eventually, I know, I will have a clue; because, I will be in the thick of it. At that point I will be living my most current definition of success–surviving, putting one foot in front of the other, by my own sheer will, in spite of only having a piece of my heart left.

 

 

The Ya Yas, True Friends, Sisterhoods, They Are Real!

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I grew up not knowing a long term friendship like some folks. For many reasons. I moved a lot when I was a kid, so friendships ended before they even had a chance to prosper with the evolution of my growth into adolescence. I was also kind of self absorbed as a teenager and admittedly, I realize now, that I did not work hard to keep friendships over distance and time. As I sprouted into adulthood, I found it difficult to make worthwhile friendships because so much seemed to depend on us having similar circumstances to keep friendships active. Perhaps some of it was that I didn’t work hard enough to bridge circumstantial gaps to keep the friendships alive. Continue reading

To My Daughter In Heaven

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Oh sweetest girl in the world! I miss you more than words could ever describe. My heart is broken into a million pieces. And I fear there is no glue that could put it back together again.

From the moment you entered this world you changed my life in ways that I could have never anticipated. You made me, an ordinary woman, into an extraordinary person, you made me a Mother. Not just any mother, but your mother. And I was privileged to have had that role in this crazy life.

Before you were born, I was nothing compared to what I was after you were born. In fact, I barely remember life before you. You redefined my views of success, wealth and life in general.

Because of you I experienced joy in the most pure form. Because of you I experienced love that could move mountains. Because of you I learned to live without reservation, without looking too far ahead or behind. Because of you my other relationships are so much deeper and more meaningful. Because of you my heart grew exponentially. Because of you my world became brighter than the sun. Because of you I learned to set aside lofty dreams and embrace the true beauty of the moments as I lived them. Because of you I became a better version of myself.

Every morning you lit up my world, like a star that I could reach out and touch in all of it’s beauty and glimmer. Every giggle, every smile, every loving gaze from you to me etched a memory in my heart that time will not fade.

When you were just a tiny baby and every moment forward, I held you so tightly, for fear that I might lose you. I soaked up your smell, your sweetness and your warmth constantly. I snuggled you close so the forces of the outside world could never touch us, well aware they desperately wanted to.

Being a Mom is not easy. Being your Mom was even more difficult than most. Often times I spoke to God and told Him that he made a mistake. I told him that I was not strong enough or good enough to have been entrusted to care for such a precious creature. I told him I was highly unqualified for this role. It was never, ever that I didn’t want to be your mom, because I loved being your mom. But, I was worried that you didn’t get what you deserved and needed for a mother because you got me. It did not matter what people said to me, I still felt that I wasn’t good enough. And then, I realized, I was right, I wasn’t good enough before you. But, you made me good enough. You are the reason I became a great mom.

Not only did I love you, but I fell madly and hopelessly in love with you, more and more each day. Four years we spent together. Hardly apart. I cringed when you had to leave my care to go to school. But you lit up like a Christmas tree when we got to school and I learned to let go enough to let you grow and experience the things life had to offer. I rarely ever left you in the care of another, because I missed your sweet face so much, and I also didn’t think anyone could care for you the way I could. How far I had come in the belief of my abilities being your mom!

You were hospitalized often. You were so complex, not often sick, but your little body was complicated and the doctors were so often stumped and surprised by you. Your Daddy and I spent many nights with you at your hospital bedside. You were the most precious part of our world and we were all in. We brought all your pretty clothes, shoes and hair bows to the hospital so you could stay stylish. We brought as many toys and physical therapy tools as your hospital room could fit. Mommy and Daddy diligently worked out with you, hospitalized or not. We would not let you down. When you lived in the hospital, Mommy lived in the hospital too. Daddy lived in the hospital and at work. We did this willingly, we would not have been anywhere else but by your side. We were a little family, a team.

After four precious years, we had to let you go. The hardest thing we ever had to do. It was not planned, it was no expected, at least, not by anyone here on earth. I always said we lived life and death each day. We never knew if we would get to keep you for tomorrow. But, now I realize those were just words. I said them, they were true, but I never truly expected them to happen. We always beat the odds. YOU always beat the odds. We won every battle. Every. Single. One. I guess, by loving you so much and living the fullest life we could with you, we “forgot” about the negative possibilities life could bring.

This life was amazing. I experienced the best parts of being a parent because I experienced the hardest parts of being a parent. You were my world. You were the most beautiful child I had ever seen. You had the ability to look deep into a person’s soul and retrieve her heart and hold it in the palm of your sweet little hands. Hardly a person you met didn’t experience that effect!

You were an angel on this Earth. I knew it from the moment you were born. Your name sign was the ASL sign for “angel” but using ASL “D” hands. You were given that name sign at about 5 months old. Your 1st birthday party was an angel theme. We knew you were an angel. We just forgot angels don’t get to stay on Earth for long, they belong in Heaven. And that is where I speak to you now. I believe that love transcends worlds, planes of existence. So, I send these words on the wings of love so that you receive them and know what is in my heart now.

You were loved beyond measure. You will be loved through eternity. Love is so strong. Love will always connect us, even between Heaven and Earth. I do not know how to live in this world without you here. But, I know I need to try, for you, because you tried to stay as long as God would allow. And I know that may not have been easy. I am grateful for every moment we had with you. I am grateful for the person I am because of you.

Oh, Delainie, my sweet girl, Daddy and I are having a hard time without you. Once you know how amazing life can be, you can’t go back to the way it was. We know the life we lived with you was perfect and we know that we did the very best we could. Sometimes, we feel like we let you down, like we missed something we should have known to keep you with us. We rewind the story of our summer and we replay it in many different ways, wondering if one of the ways would have resulted in you still being here. But, then we remember, you were an Angel on Earth, your time here was not meant to be long. We tried to make it as long as possible, we got four years when others said we would be lucky to get six months.

We know that we have to move forward. But we move forward each day with hopes of living a good life so that at the end of our days we can reunite with you. In the meantime, we will not stop loving you and we will not stop loving each other. A day will not go by where I will not wish you were here, in my arms, holding my hand, giving me kisses, reading books… Just as my world changed when you came into it, so it has with you leaving it. But, you made me a better person for life, not just four years. And that person will navigate this life with pain and joy at the helm. In time, I think the pain will make way for the joy to lead this journey.

Eternally grateful for you,

Your Loving Mother

I Am Grieving During The Holidays

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The Holidays are often fraught with challenges. What to buy, how much to spend, what not to spend, who to spend what on, who to spend time with on what days, travel, traffic, cooking, cleaning, wrapping…It’s known to be a stressful and exasperating time.

And, quite honestly, I never understood why people were so stressed and grumpy around the holidays. I always loved the bustle and gathering with as many family and friends as could fit in one place at one time.

But, this year. This year is different. I am fresh in the grief of losing our daughter. I have no desire to celebrate the holidays without my child. Every light, every decoration, every holiday gathering is a stabbing reminder to my heart that my sweet girl is not here.

And, for the first time, I feel like that “grumpy” holiday person, watching everyone around me enjoy the bustle and looking forward to large gatherings while I cringe at the thought of it. It is a strange feeling, a strange place I am in.

I am struggling between two things. It’s like having the angel on one shoulder and the devil on the other shoulder. The devil on my shoulder makes me want to be angry. He makes me want to say there is no God and that I have NOTHING to be thankful about.

But, the angel on my shoulder reminds me that I know that there is a God, one I don’t always see eye to eye with, but God exists. He reminds me that I know that I have a plethora of things in this life for which to be thankful.

But these two on my shoulder are in constant conflict, making me a bit of a basket case. It appears, that this holiday season anyway, I will be that stressed out, slightly bah-humbugy person that I never understood from years prior.

Even though it may not be apparent from the outside looking in or even from my own perspective when that devil sits on my shoulder, but, I know, with my whole heart, that I am lucky.

I have had what few get to have in life. I have experienced pure joy, endless love and miracles on earth. I have been surrounded by the most loving, gracious and genuine people the world could offer. Two of which are my parents, and two of which are women who consider me a daughter of their hearts. There is no end to the love here on earth, for my sweet girl, or us, her parents.

So, though this holiday season will bring me pain that cuts to my core, I will be saved by what has kept me going since my sweet girl died. I will be saved by Love. Simply, LOVE. Nothing is stronger than love. Love guides, strengthens, lights, heals and steadfastly leads Hope and Faith along every path. It is the one thing that connects Heaven and Earth.

So, if you see me cry or if you see me quiet and withdrawn this holiday, know that I know the wonders of the holidays and every day of the year for that matter. In fact, I will most likely be reflecting on those wonders when you see me. Know that love is the only thing I need to push though the pain that grips me tightly. It is the only thing that wins out when the angel and devil battle on my shoulders.

This holiday season, I may not act so merry and bright, but I will love with every fiber of my being and I will welcome the love given with every breath I take. The holidays will have ups and downs with my grief, but these things I will not take for granted.

What Am I Supposed To Do Now?

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I have always thought of myself as a pretty together kind of person.

However, since my precious daughter died, I have been a bumbling mess of a person. Some days I don’t even feel like a person at all! Which is totally reasonable considering the situation. However, I don’t have a clue of what I am supposed to do now!

The last four years I spent advocating for my child in every way possible. I was so used to fighting for her needs that I would fight for things that didn’t require a fight! I woke up each day as a Mom and little else. I was happy with that. I loved that. My whole life revolved around my child first and foremost. She needed me. And now, she does not need me. And I don’t know how to live without her needing me.

Our friends and family are getting up each morning, going to work, coming home, shopping, cooking dinner, etc. They are back to life as normal since Delainie’s death. My husband even has a tiny fraction of normal that he has got back to, in that he has returned to his job. The world around us is turning just as it always does. But, I, however, feel like I am standing still watching it all go by, looking back and wondering exactly where things got so off track.

I am not getting back to “normal”.

I have made a point to max out my social calendar as best as possible because the “quiet” times cut me to the core of sadness. I am fumbling around like a lost teenager who has gone out on her own for the first time, except I am not innocent to the pains of the world, to the struggle.

Sometimes I just sit and stare and wonder what I should do next. I am lonely even around people. I am quiet even when I have things to say. I am broken and I haven’t figured out how to move forward with this brokenness.

Because, let’s be honest, I lost my only child, it’s not likely that this break is going to get fixed. This wound cut through many layers, my body, my mind, my heart, my soul. There is no ‘healing” for a wound like this.

What is more likely is that I will learn to live with this wound. Similar to a person with a slightly noticeable limp, indicative of some old injury that never fully healed. Hopefully, I will not let this disability, this brokenness of my heart, body, mind and soul, limit me from enjoying a meaningful, fulfilling and happy life.

Personally, at this moment, I think that is a freaking lofty goal. But, that is the kind of person I am. I have always set lofty goals and excelled in challenging circumstances. So, perhaps, let’s pray, I will achieve this goal. And perhaps, setting a goal like this is one tiny step, for me, of getting back to “normal”.

To be honest, I sort of just want to fast forward through time, to a place where I am successful living with this brokenness. But that is not reality. I can only succeed at this life goal if I work hard. Somehow I don’t think fast forwarding through life counts as working hard!

I am a jumbled up mess of emotions and scattered thoughts these days. I cry a lot. I try to talk myself into understanding that everything happens for a reason. I try to remember to thank God for the moments I had with my sweet girl. I get angry, lonely and faithless. I let go of anger, fill up my social calendar and find faith when I reminisce of my life with Delainie. When I have joyful moments or great days, I feel guilty because I think it’s inappropriate to be happy or have fun at this juncture. I chastise myself for feeling guilty.

I have been thinking of the way I lived my life before Delainie and I don’t think that there is much that would be fulfilling to me now. Life before Delainie seems so shallow, so monotone and so unexceptional. The life I experienced, through motherhood of my special child, was so much more than I ever knew existed. Once you experience something like that, you can’t go back. Kind of like a skier who loves skiing in Vermont, but goes to Utah to ski and is never truly happy skiing in Vermont again.

The life I had with Delainie is no longer an option. So, the life ahead is, well, it is whatever it ends up being. But it won’t be like anything I have ever experienced before. This I know.

Since I have no clue what I am supposed to do now, I am counting on life to lead me, along with faith, hope and love. I am also hoping for some divine intervention to help me find my future calling. I mean, I am the mother of an angel, after all.