Thursday, December 17, 2009
I just wanted to take time out of my busy holiday season and thank each of you for being there for me in 2009. It was a tough year for Efrain and I and at the same time a year of so much love and support!
I continue to be amazed by the small miracles that happen around me everyday. Whether it be something as small as a phone call from an old friend changing my day, Elena saying something to make me smile, or my family always being at my side. I was truly blessed to see the premiere of a movie coming out in January, entitled "Extraordinary Measures", a true story about a father that risks everything to save his children's lives. It was an incredible film and such an inspiration! One of the themes of the film is 'make miracles happen"! And I left the movie wanting to do just that. Miracles don't have to be finding a cure for a disease or making a huge impact on the world. Miracles can be as small as providing a gift to a needy family, giving Elena's old clothes to a refugee family giving birth to a daughter this December, or making a necklace to raise awareness for Alzheimer's Association and Trisomy 18 Foundation. These small acts create lasting impressions, everyday miracles that do make a difference in someone's life.
With that said, I received an email this morning that the Trisomy 18 Foundation won the first round of a Chase Community Giving Program. See the email below. It made me so happy and I thank anyone of you that voted in Round 1. Please be sure to vote again during Round 2, again your small act could mean that no family will have to deal with the diagnosis of Trisomy 18 for their unborn child, believe me when i say that would be a HUGE miracle!
I wish each of you a wonderful holiday, and happy new year.
We did it! We did it! Late yesterday afternoon, we got the call and heard, "Trisomy 18 Foundation is one of 100 winning organizations chosen in Round 1 of the Chase Community Giving Program." I screamed and then I cried – happy, happy tears!
Your Votes and the votes of your Friends on Facebook made it all Happen! Trisomy 18 will now receive a $25,000 Grant from Chase AND we get to advance to Round 2 for a chance to win one of 6 final awards ranging from $100,000 to $1 million for Trisomy 18 programs! Imagine!!
Mark your calendars: Round 2 voting will begin Jan 15th through Jan 22nd.
So we'll have more news to follow about gearing up for the BIG VOTE and the REALLY BIG BUCKS that could change it all for Trisomy 18 into the future in January! Our community is primed and ready! And together we can make this happen! I know it!
Be sure and become a FAN on the Trisomy 18 Facebook Page if you are not already right here: http://www.facebook.com/trisomy18.
Chase Community Giving You can also share that web address with everyone you know to get our FAN base on Facebook as large as possible before the Big Vote. Numbers and networking and social media are going be the key to our success come Jan 15th when the vote begins!
But for now – It's our time to celebrate this tremendous honor and bless all the children we know with Trisomy 18 we carry in our lives and in our hearts who have inspired us to come together in community to be their voices in the world.
And have you noticed? When we come together and speak and act as one, our voice is powerful and we CAN have an impact!
Thank you for investing your vote in The Trisomy 18 Foundation where together we ensure that no family learns about Trisomy 18 and walks this journey alone.
no matter how fragile their life
brief their days,
forever changes our world."
- Victoria Miller -
Tuesday, November 24, 2009
"The miracle is not that I finished, the miracle is that I had the courage to start"
-John "the penguin" Bingham, Runner's World columnist
It has been over a week since I finished my 10th Half Marathon in Richmond. It was a great weekend, and the race was a success. My sister and I finished hand in hand. While it was not our fastest race, it was my most emotional. I broke down at the finish line and I am thankful for the amazing people that I met along the 13.1 miles. One man was running his first half marathon after losing 50 pounds, another woman was a kidney donor and was running for Donate Life, and yet another woman was running her first half marathon and she too had lost a baby and we watched her cross the finish line! It truly is amazing what inspires someone to do an endurance event. But no matter what the motivation, crossing the finish line makes you feel like an Olympic athlete. You feel like you can do anything and you have the courage to make miracles happen.
The Richmond Half Marathon was exactly 16 weeks from the day that we lost Alex. I was sixteen weeks pregnant and Elena was 16 months old. "It Was a Sweet Sixteen", that is the title of my blog and that is the number that keeps popping up whenever I think about Alex. So..as fate would have it..my sister and I checked into our hotel, got settled into our room and met our friend that was running in her first half marathon. She happened to be a minister and asked if we wanted to say a good luck prayer with her. We agreed and she asked me about the picture that I would be wearing on race day. I explained that I was running this half marathon in memory of my dear baby Alex. Just like that I turned to our room and that is when I got chills, our room number, 1116. It was as if Alex was telling me that he was there with me to give me the courage to finish this race.
The Half Marathon may be over, but my race has just begun! I plan to do another half marathon in the spring and I have made it my new goal to do at least 1 half marathon (or marathon) a year for the next 16 years. It is my hope that I can honor his memory and at the same time, his sister Elena (and hopefully other siblings) will see how much he meant to me and perhaps will learn the importance of finding courage in the face of adversity.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."
Wednesday, November 11, 2009
We all know the expression "When life hands you a lemon, make lemonade". I have seen first hand how your life can change in one moment. I watch friends and family go through the death of the loved one, divorce, unaccomplished dreams..and it is not the loss itself that changes you, it is how you deal with your loss that defines who you will become. I mentioned before that Alex taught me so much in just 16 weeks and I am a different person because of the dream of him. I decided right after losing Alex that I would "decide to get better and not bitter". I can not feel sorry for myself when life does not go the way that I plan, instead, I look at what I can do to "make lemonade' from the lemons I receive and enjoy it's sweetness every day!
I continue to raise money for the Trisomy 18 Foundation. I plan to wear a picture of my baby Alex in my womb on my race day shirt. And I plan to continue raising funds after my race is over. I have raised a little over $1000 and while my goal is $1600 to represent the 16 weeks of knowing and loving Alex, I am happy with the support and donations that I have received and I will continue to raise money to reach my goal. If you are reading this and wish to donate go to www.trisomy18.org/goto/alexramirez My half marathon this weekend is just one way that I am taking my loss and doing something productive and positive. I plan to continue my pursuit of happiness and a day does not go by that I do not thank Alex for helping me find myself again, I will forever be grateful to him.
I do plan to continue blogging after my half marathon and i hope you will continue to follow my blog. I am sure that the holidays will prove to be difficult for Efrain and I , especially Christmas. I still think about how exciting it would be to welcome Alex home for the holidays. To give Elena a baby brother and enjoy the holiday with the new addition to our family. But I also think about how blessed I am to have an amazing family that has been my rock over the past 4 months. I am looking forward to spending time with my family and thanking them for being there for me.
Wish me luck this weekend, I am looking forward to spending time with my sister and completing a half marathon with a purpose and goal accomplished.
“If you want to accomplish the goals of your life, you have to begin with the spirit.” --Oprah
Thursday, October 22, 2009
As part of my half marathon in just 22 days (UGH!!), I have made it a goal to raise $1600 for the Trisomy 18 Foundation to honor Alex and hopefully be able to help other families dealing with a Trisomy 18 diagnosis. I have raised about $800 thus far, so I am half way there! I decided on $1600 as may goal as part of my "It was a Sweet Sixteen", as I was 16 weeks pregnant when we lost Alex. I have been training for 16 weeks for my half marathon and thus $1600 would be another symbol of my bitter sweet journey of healing. I feel like I have learned so much about myself and others throughout this ordeal and I hope that my words and my goals will help someone else smile through there sorrow and know that you can make a difference!
With that said, I am hosting a fundraiser at aMuse Toys –Fells Point Location
1623 Thames Street on Tuesday, October 27 from 6-8 p.m aMuse will donate 20% of in store purchases (6-8pm), 15% (all day) of online purchases made at www.amusetoys.com
(use code “Trisomy” at checkout).
I hope you will join me. I plan to buy a few toys for Elena and I can only hope that Alex will be smiling down on October 27 knowing that I am doing this for him, to show how much he will always mean to me. His short life was not in vain, his legacy is that he has shown me that I can do all that is in my power to help other families and hopefully through awareness and fundraising, one day Trisomy 18 will not be a diagnosis that any family will have to know.
Wednesday, October 14, 2009
This weeks blog is especially difficult for me. I have been having a very tough week and I have been thinking about what I would write for about 3 days now. Where do I begin?
For those of you that don't know me, my nephew, Jason, passed away in July 2007, after injuries sustained from a fatal car accident. He would be turning 21 this coming Saturday, October 17, 2009. My family and I will be celebrating Jason's life on Saturday and while remembering him does bring us peace, it is hard to believe that his life was so short, he will never know my children, he will never have children of his own and he will never grow old with the rest of us.
In addition, tomorrow, October 15, is Pregnancy and Infant Loss Remembrance Day. I attended an event at GBMC this past Sunday to memorialize all babies born too soon and it was really uplifting and heart wrenching at the same time. Each family received a candle to create a "wave of light" tomorrow around the world. We are each asked to light a candle at 7pm in all time zones, all over the world. If everyone lights a candle at 7 pm and keeps it burning for at least one hour, there will be a continuous "wave of light" over the entire world on October 15th. The candle burns in memory of our loving babies, born too soon but loved forever.
Since losing Alex, I have made it a goal to create a necklace design in his memory. I wanted to create something that was symbolic to me but could also be a universal symbol for anyone wishing to support my cause. I know right away that the name of the necklace would be "Eternal Love". Because no matter what your motivation for purchasing this necklace, "eternal love" is a powerful phrase for every aspect of your life. To me, "eternal love" proves that even though I will never be able to hold my baby, my love for him will last a lifetime. And even though I will be celebrating my nephew's birthday without him, he is always in my heart.
The "Eternal Love" Necklace will be available as early as tomorrow on my etsy website, www.tuvida.etsy.com , as it is very important for me to showcase this necklace on October 15th. A will be donating $10 from the sale of each necklace back to both Trisomy 18 Foundation and Donate Life. My nephew donated his organs through Donate Life and it is the official charity of the Richmond Marathon and Half Marathon.
Today is one month til race day!! I am getting nervous for the 13.1 mile distance but I know that Alex and Jason will give me the strength to run, walk or crawl to the finish line. My goal of completing this half marathon in memory of Alex and Jason is only part of the journey...I plan to run with love in my heart and I hope to inspire others to turn sadness into motivation, death into life...life is too short to sit around and do nothing, we must live it and challenge ourselves to always be better!
"True love is eternal, infinite, and always like itself. It is equal and pure, without violent demonstrations; it is seen with white hairs and is always young in the heart."
Friday, October 2, 2009
"A mother is the truest friend we have, when trials, heavy and sudden, fall upon us, when adversity takes the place of prosperity, when friends who rejoice with us in our sunshine, desert us when troubles thicken around us...still she will cling to us, and endeavor by her kind preceps and counsels to dissipate the clouds of darkness and cause peace to return to our hearts."
As I talk to more and more mothers about the fate of my Alex, I am always meeting such amazing and strong women that share a common bond..strength. Motherhood changes a person, for the better, and whether you have the joy of knowing your child for a lifetime, 19 years, 4 years or only in the womb, you are a stronger more courageous person for being a mom.
I have been amazed how many women have reached out to me and shared their stories of miscarriage, stillbirth or child's death with me in the hopes that I will understand the pain that I feel is not alone, I am not the first women to endure such pain and I will not be the last. Being a woman is a emotional roller coaster, one that I will gladly ride again and again.
I recently ran into a mom whom I have met through my business and she shared with me that she miscarried at 10 weeks with her second child. She now has 3 perfect, adorable boys and she said that while having another baby will never replace the despair in your heart, holding the next baby in your arms is the greatest sense of hope and strength. She also explained that she thinks we (as women) are so incredibly brave, because no matter how painful having to loss an infant feels, as a woman, you just know that you want to try again, and even though you know it will be difficult and emotional..the joy of motherhood is worth it!
I also have been amazed by the strength of many women I know that have dealt with a difficult diagnosis for their child. A friend from high school has kept me in the loop as her son had his first stroke 4 years ago, when he was just an infant. She is so brave, and I asked her if I could share some of her words through my blog:
'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence... 'The will of God will never take you where the Grace of God will not protect you.'
Tuesday, September 22, 2009
I was really struggling this past week to motivate myself to run and to inspire myself to stay positive. I would have been 6 months pregnant this week and I found myself feeling very sad last week. Saturday morning I woke up excited to cheer for the runners and find a sense of hope from these selfless individuals so dedicated to a cause. It did not take long for me to be re-inspired that morning. What an amazing group. First of all, everyone ran with a smile on their face the entire 21 or 13 miles. The "Team Unforgettable" , as they are called, was just that, unforgettable and my motivation for the week ahead, both physically and emotionally. I am in awe of how a group of strangers can come together and bring so much awareness to a cause while inspiring others to challenge themselves to do something that forces you to look outside your own comfort zone and accomplish a goal that many only dream about.
That is when the idea hit me about Paying It Forward. That is essentially what these folks are doing. Many on the team do have a personal connection to Alzheimer's disease, and others still, don't know anyone who has ever been affected by the disease. They are simply good people doing a good deed, paying it forward in the hopes that their $1600 will mean a cure will one day be possible. If more people looked at small deeds having large outcomes, the world would be a better place.
With that said, that is my goal this week, Pay it Forward. I left the NCR Trail that morning feeling motivated to do my first deed. So..I stopped for a coffee and paid for the gentleman behind me, he seemed confused at first, but as we left the Starbuck's, he simply smiled and thanked me for my generousity. Later that day, Efrain offered a homeless man $10, the look on his face said it all, $10 meant he would not go hungery that one day. I will never know if that gentleman passed on my good deed, or if the homeless man did get himself a good meal, but I have to beleive that our small token will play a larger role in someone's live one day. Afterall, that is why people join Team Unforgettable. They know that their funds will not find a cure tomorrow, but it will be a catalyst in finding a cure for someone's father, mother, grandmother, sister and wife.
I have to remind myself that is why I am training for the Richmond Half Marathon. I have made it a goal to raise $1600 for Trisomy 18 Foundation. I know that my funds will help researchers continue to find a way to prevent Trisomy 18 from affecting any fetus. Just recently I joined the Trisomy 18 foundation Facebook Page, and saw a great article on a a breakthrough research at University of Florida, in which they beleive that doctor's may be getting closer to determining what causes chromosome abnormalities such as Trisomy 18 and how this can be prevented in the future. This research is possible because of funds raised through the Foundation. Not only that, but it provides vital awareness and a caring community for families faced with such a diagnosis. No one should have to go through the pain and suffering that I felt this past June, and I will continue to do all that I can to play my small part in making sure Alex's Legacy lives on through my efforts to raise funds and awareness for Trisomy 18 Foundation.
I urge everyone to Pay It Forward in some way in your live. If you have a cause that has affected someone close to you, a friend, a neighbor, a relative, be proactive and do something to make a change. Whether it be training for a marathon, walking in a 5K or volunteering for the Red Cross, your small deed plays a bigger role in someone's life, if not today, maybe tomorrow, maybe next year...it is not important when, but simply that you can and will make a difference and that is all that really matters.
Wednesday, September 9, 2009
I spend this past Labor Day Weekend at the Ocean City beach with my parents and my mother in law visiting from Colombia. We had a blast, enjoyed amazing weather and I took a ton of pictures to remember the weekend. This picture is my favorite memory of the weekend. My husband, Efrain, decided to lay in the sand and Elena just laid down right next to him! It was such a simple act but so touching to see her emulate her daddy! To just see her look at him it made that moment seem like a lifetime. My mind of course immediately turned to what I would be inspired to write about this week. Watching Elena get lost in that 30 seconds of sandy bliss, I found my title, Live for Today.
Too many people (myself included) want more in their life. We get caught up the "American Way", " wanting a bigger house, a better car, more clothes, more money, our idea of a better life. But when we take the time to look at what we have today in our life, that is when we should count our blessings and know that God has given us today and we should not waste it thinking about tomorrow. Life is not about what we have, rather what we do, what we give, what we have done. I want to look back on my life and know that I made a difference in this world, whether that simply means being the best mom that I can be, the best wife that I can be or perhaps my life will touch someone else and inspire them to do the same, I want to look back and know that I lived a life that mattered!
I recently applied for a part time job at the MAC Harbor East to work in the Kids Club. I am very excited about the opportunity to work for the MAC and I look forward to being working with the infants and toddlers for a few hours a week. I attended a "Communications Seminar" yesterday evening and I wanted to share one aspect of the seminar that I thought fits perfectly with this weeks inspiration. We were asked to read an article about the new president of the IHRSA, International Health, Racquet and Sports Club Association. The article poses questions about if you can name 10 people who have won the Noble Peace Prize and then asks if you can name 3 friends who helped you through a difficult time? The moral being " The people who make a difference aren't the ones with the most credentials, the most money or the most awards- they're the ones who care."
If we focus to much on trying to impress others with money and material things, we forget how to simply impress others with our compassion and love for life. I left the seminar last night and I was so energized that I decided to run! I couldn't stop, I ran for about 50 minutes and came home to the pleasant surprise of my husband asking me to dinner. It was such a fun evening spent just talking and enjoying the moment. That is how I want to live my life. Each day is new and exciting and I don't want to miss out enjoying the now because I am worried about the future. The article from yesterday goes on to read, "It doesn't matter if you have or haven't don a great job in the past. Everything can change for the better today."
I hope that Alex is looking down and he knows that he is the reason that I am changing my outlook on life. I have not felt this humble and alive in many years. I feel so lucky to be where I am in my life. My sadness has brought me more happiness, and that is something I will forever remember as Alex's legacy in my life.
Til next time, enjoy each day,
Monday, August 31, 2009
"Yesterday is history, tomorrow is a mystery. Today is a gift, that is why we call it the "present"
It is 65 degrees outside today, sunny, cool and just plain amazing. I ran 6 miles this morning and I am convinced I could have run a full marathon. It was the best run that I have had in over 2 years and I feel great! As I was running, I thought about what an incredible gift it is that God gave me this day to enjoy. I thanked God for my health, and for blessing me with this spectacular day. That is when this weeks inspiration came to me...the smallest gifts. Gifts come in all shapes and sizes. A gift does not have to be a physical item that you receive. It can be a hug, an unexpected phone call or in my case today, the warmth of the sun and the refreshing breeze that moved me to run!
I could not help but think about all of the gifts that I have received because of Alex. Each week I talk about the fact that I feel like I have been given an opportunity to really enjoy and live my life again, and each day I am reminded that Alex gave me the strength to look at my life and take advantage of all those opportunities. I don't know what tomorrow will bring and thus I am learning to live each day to it's fullest potential. Yesterday, I took Elena to an art class at Gymboree and she got to make a painted landscape (a masterpiece!!) and a sailboat. Something as simple as painting and drawing was the highlight of my day. Elena is the greatest gift that God has given me and every day I discover more gifts that she continues to give.
One such gift that Alex gave to Efrain and I was the Now I Lay Me Down to Sleep organization. Our photographer, Julia Pearson, was an angel that came to us and I only hope that she knows how important it is for us to have the memories of Alex. I look at all the pictures on a daily basis and I smile at the memory of feeling Alex inside me. One of the quotes on the NILMDTS website reads, "No footprint is too small that is can not make an imprint on your soul" That quote is so powerful and could not be more accurate. From the moment we know that Alex was growing inside me, he changed our lives. Efrain and I started to plan for our family, making room in our home, talking to Elena about her new baby brother or sister and giving my belly kisses so that Alex would know from day one how much we loved him. Once we know Alex's fate, our dreams changed but not our love. We still continue to make plans for our family, we still talk to Elena about her baby brother and we still kiss my belly, only now we kiss the pictures of my belly. Alex is with us forever and Now I Lay Me Down to Sleep gave us the gift of eternal memories.
Each day now I look forward to the gifts that I will receive. I have already been given the gift of a great run today, but there could be more to come. Large or small, each gift makes me grateful to be alive and gives me hope that Alex is looking down upon me and I can't help but believe that he is responsible for the gifts that I am given. I love you Alex, thank you!
Friday, August 21, 2009
I have been doing a lot of reading since I discovered the fate of my little Alex. I started reading books written about dealing with the loss of an infant, and I have also read other grief books that help you understand how to overcome your sadness and continue living your life. One such book, "When Bad Things Happen to Good People by Harold S Kushner, the author states that when we experience loss the question should not be "Why did this happen to me?", rather "Now that this has happened, what am I going to do about it?"
What I am going to do now that I will never know, never hold, never kiss what should have been my first born son? I have asked myself this many times and I repeatedly turn to Elena when my heart feels too heavy to face such questions. It is her smile, her laugh and her innocence that gave me my answer...Live for each moment, learn lessons through the eyes of a child.
When I think about the joy of living life as a child, I can't help but think of the quote "Dance as if no one is watching, love as if you've never been hurt." My little Elena has got some rhythm and she loves to dance. Anytime she hears music, her hips start to move, she doesn't care if the world is watching and even if she was crying 1 minute earlier, her mood is changed and her smile lights up the room. Likewise, Elena does not yet know the pain of loss, death, disappointment and anger. She falls, she cries and she gets right back up. A child's heart is open and they have so much love to give. While they may be hurt for one brief moment, they are able to overcome this hurt and go on loving..."love as if you've never been hurt", if Elena can do this, why shouldn't I try to follow her lead? Become like a child and don't let your heart be broken by harmful things, but let it always bounce back with new hopes and second chances.
Yesterday was my nephew Julian's 2nd birthday party! Watching 20 children run around My Gym, I could not help but be in envy of the excitement that 2 hours of play brought to each child. When is the last time I just played for 2 hours, not a care in the world, not a worry on my mind? I couldn't tell you. However, back to the question at hand, "What I am going to do now that this has happened to me?" I promise that I am going to take time for myself. Whether it means 2 hours of running, 2 hours of pampering, 2 hours of reading or 2 hours of doing nothing, I know that I need that time to reflect each day.
Before lossing Alex, I was going through the motions of life without really taking time to live it. I feel as if I have a second chance at life. I chance to find myself again. Running is helping me feel better about my physical self, reading and blogging is helping me take care of my spiritual self, and being Elena's mom is helping me remember to laugh more and "dance as if no one is watching." Which, if I may add, is the best part of my day...nothing beats dancing to "The Hot Dog Dance" each morning! Great way to start each day!
'Sometimes looking deep into the eyes of a child, you are conscious of meeting a glance full
of wisdom. The child has known nothing yet
but love and beauty. All this piled-up world knowledge you have acquired is unguessed at
by her. And yet you meet this wonderful look
that tells you in a moment more than all the
years of experience have seemed to teach.'
Friday, August 14, 2009
I have truly been amazed by the outpouring of emails, cards, letters, phone calls and visits. It is times like these make me realize how important relationships are to get you through the good times and the bad times. Every relationship has a purpose, each person that enters your life leaves an imprint on your soul. I can see that now. I have been lifted up by my closest family members and I have been surprised by people I have not talked to in years. Friends that I laughed with in college, have now been a shoulder to cry on. My uncle whom I only see a few times a year, sent me flowers from Alex, with a message from heaven. Those flowers arrived and words can't describe the overwhelming sense of peace that I felt. I immediately called him as I needed him to know how important the gesture was that day.
Many friends expressed their sadness for me and many have been silent during this time, as I am sure it is uncomfortable for some to talk about my situation. At first I was upset that people would see me and not ask me how I was or acknowledge the death of my little Alex. But, again I can't let anger control me. Love comes in many forms, and I need to remember that a smile, a hug, a simple glance can mean so much. My friends have been so wonderful with their understanding and whether or not we talk about Alex, just being with them and laughing is , as they say, "the best medicine". It is the small tokens of love that I am thankful for each day, because without my friends and family, the healing process would be much more difficult. I am not alone in this journey and I thank everyone for their open, honest conversations with me and for helping me smile even when my soul is crying.
After all, "It is better to have love and lost, then to never have loved at all". As I said before, many have asked me if I am nervous to get pregnant again, if I will try again soon and if I feel differently about the overall joy of pregnancy. The answer is complicated. Of course I will never be as naive as I was with Elena about pregnancy and birth. However, I can't wait to experience the love of knowing a child is growing inside me. Pregnancy is and will always be the greatest joy of my life. I loved Alex from the moment he was conceived and I will always love him. If anything, he taught me to appreciate each moment of pregnancy more and I think Efrain and I both will be better parents for loving Alex.
Finally, I am learning to love running again!! It has been hard getting back into training and running, especially when it is 100 degrees outside. But I am doing this for more than myself and that makes me want to run and I think I am slowly (and I mean slowly) learning to love running again. I ran 4 miles on Thursday and it was not easy. I was listening to "Beautiful Day" by U2 when I almost gave up. But the tune kept me going, it is a beautiful day, each day is a gift and I am lucky to be alive.
Thank you to everyone for following my journey, remember to cherish each and every day and know that something as simple as a hug is the greatest symbol of love that you can give. Until next time...
Monday, August 10, 2009
Friday, August 7, 2009
My sister Amy gave me a WillowTree design when we found out about Alex's diagnosis of Trisomy 18. The symbol of the little boy holding up the balloon with the word hope inside is so powerful and the word is one that I constantly use for my own healing. I have always believed that when you have hope, anything is possible.
This past week has been hard for me. August 6 marked one month since I last felt Alex inside me. One month since the dream of his birth has died. How do I remain hopefully? There are days when I cry and feel so lonely and cheated. I see pregnant women and I feel so jealous of the joy that they have to look forward to and I find myself becoming angry with God. But I soon take a step back and remember all that I have in my life and the happiness that surrounds me.
Each day brings new hope and I see everything as a sign that I can move forward and my pregnacy with Alex will forever be remembered.
Don't laugh!! Wednesday my friend Gina and I attended the American Idol concert, yes, you read correctly. We had a blast and I know now that there was a reason I joined thousands of tweens for a night of Idol madness! Singer Danny Gokey, lost his wife last year, just 3 weeks before he tried out for Idol. He has always inspired me with his strength and he sings with such passion and conviction, I think I cry everytime I hear his voice. He sang 3 songs and then ended with My Wish, by Rascal Flatts. Before he sang the song, that he dedicated to his wife, he spoke to the crowd. He talked about this wife's passing and said" You can not let a tragedy or loss define you...you must continue to follow your dreams and define your life" Gina and I looked at eachother as if he was directing those words to me. That's exactly it...I can't let Alex's death define the person that I am or will become. My dream of him will always live on and my dreams for my life must continue. I left the concert ready to take my business, my training and my life to the next level.
I have been running all week. I am up to 3 miles, which may seem like nothing, but considering that I have not run more than 2 since October, it is a step in the right direction. I have downloaded motivational music for running and inspirational music when I need to be reminded why I am training for a half marathon. Of course, My Wish, made the list after the Idol concert, but my favorite song remains to be, You Never Let Go, by David Crowder Band. I heard this song on another blog of a women who had lost her son after 16 minutes of life. He was born with Trisomy 18 and she described it as "the sweetest 16 minutes of her life". It gave me chills to know that our lives were both touched by Trisomy 18...mine with 16 weeks of Alex growing inside me, her's with 16 minutes of knowing her son. Reading her blog and hearing this song makes me feel so alive. While it hurts to think that we have to endure the pain of lossing a child that we will never know, it gives me HOPE to know that we are both continuing to live a life that has meaning and I feel as if each day brings me a new sense of dreams that will continue to be fulfilled. Alex has become my strength and Elena is my motivation.
Until next week, I plan to run throughout the weekend (before it gets too hot next week) and my goal is to run up to 4 miles next week. I have created a Legacy Page for Alex, www.trisomy18.org/goto/alexramirez. You can visit this page to donate to my half marathon training. My goal is to raise $1600 total (the 16 theme again!). 100% of your funds will go toward research and support services for families undergoing a diagnosis of Trisomy 18. Thank you for you support.
Wednesday, July 29, 2009
With Alex's passing, I immediately turned to wanting to set a goal for myself with running. I researched half marathons for Fall 2009 and Richmond came to me. Why Richmond? I believe in signs, they are everywhere and I believe that they are given to us from our angels above. My nephew Jason, passed away on July 29, 2007, just 2 years ago today. His organs were donated through Donate Life and with his death, he was able to change the lives of 5 people forever. I have since become involved with The Living Legacy Foundation and Donate Life, Maryland. And as fate would have it, The official sponsor of the Richmond Marathon is Donate Life. Did I need another reason? I looked at my calender at November 14, the day of the Half Marathon and it was exactly 16 weeks of training. Sixteen? My reoccurring theme, "sweet sixteen"...Alex sent me this sign to tell me to "Go For It Mom!". With that, I called my sister Kim and she did not hesitate, we signed up and my training begins!
Those of you that know me also know my other passion is my gift of gab! I love to write, I love to read and I love to talk! I decided that my blog will be healing through words. I hope to inspire myself, inspire others and honor Alex through my thoughts. I have so much to say and I have so much to share with others. I want everyone, including myself, to count your blessings and be motivated to live a life that matters. So...I plan to blog throughout my 16 weeks of training (and hopefully beyond). Each week will represent a new inspiring topic, one that will motivate me to run and one that will give me meaning to wake up each day and know that my Alex is still here with me, teaching me to live my life to the fullest.
Tuesday, July 28, 2009
On June 17 we were thrilled to have our first sonogram to see our baby for the first time. It went as planned, so we thought, we saw him moving, kicking and the little heart beating in mine. It was the moment that I realized how incredibly excited we were to give Elena a brother or sister and to grow our family. We left with pictures of our baby and love in our hearts. Naive, we did not even think about the fact that this 13 week sonogram was to detect any fetal abnormalities. We had a perfect pregnancy with Elena, how could anything go wrong?
The following Monday, I received a voicemail from Dr. Hajj to call him back immediately. No words can describe how I felt at that moment, My heart told me that it was something serious. Dr. Hajj never called me once during my pregnancy with Elena and I guess it was “maternal intuition”, I know that my life was changed forever. Efrain came home and we called Dr. Hajj back together. He explained that the sonogram revealed a thick nuchal fluid and lack of a nasal bone. Still I had no idea what this meant and we were told to meet with a genetic counselor that afternoon.
Amy, our genetic counselor, reviewed my sonogram chart and explained that we would receive an advanced sonogram to determine exactly what we were looking at. However, based on the initial sonogram our baby had a 1/5 chance of Down’s Syndrome. I broke down, and started asking questions about how this happened, financial assistance, support groups and how to raise a child with Down’s. I told Amy that we would not want further testing if it was Down’s, we would simply prepare ourselves for a different life with our child.
The following day, I entered the second sonogram with optimism. Maybe the baby had not developed a nasal bone yet, maybe the sonogram was too blurry to read correctly. Efrain remained hopeful but held my hand and told me not to be surprised if this sonogram only confirmed the results. The sonogram started with the tech chatting with us about our due date as we looking once again at his beating heart and little kicks. It did not take long for her to soon become silent and focus on measuring the babies nuchal fluid again and again. Tears streamed down my face and I did not even ask questions. She left to find the doctor and we just prayed. The doctor entered the room and her face told us everything. She told us that the nuchal fluid was very high, there was definitely no nasal bone and our baby was showing signs of clenched hands and club foot, which could be a Trisomy 13 or Trisomy 18 diagnosis. What? Through my tears, I was escorted to meet with the genetic counselor. She explained that based on these findings, my baby did have a 1/10 chance of Trisomy 18.
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy. Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are life-threatening in the early months of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls. At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories. Some children will be able to be discharged from the hospital with home nursing support for their families, less than 10 percent survive to their first birthdays.
Immediately, my mindset changed. The doctor and counselor suggested I consider a CVS, which is a diagnostic test that confirms any chromosomal abnormalities. While I never thought I would consider such a test, I believe it is because I never thought I would need to know the fate of my unborn child. Until you are faced with the reality of such a diagnosis, you do not know what measures you will take to know how to best care for your baby. I was able to return 3 hours later for the CVS test (which is awefully painful) and we would know the results within 24 hours.
It is amazing how your life changes in one week. The week before we just wanted to see our unborn child and know that his life was flourishing inside me. Now we just prayed to be able to ever know him outside my womb. I prayed that they would call with a Down’s Syndrome diagnosis, is that crazy? At least that meant he would have a life, that I would have a life with my child. The call came at 2:30 p.m on June 24. It started with Amy asking if I was with someone and if I was sitting down. My mother and I sat together as she confirmed a full Trisomy 18 diagnosis. I honestly don’t know what else she said, only that I had a very high risk to loss the baby and if I did make it to full term, I was faced with a very high percentage of stillbirth. My baby was sick and I could do nothing. My body is his life support but even that could not keep him alive. I was faced with my child’s death before his birth.
Efrain and I wanted to know the sex of our baby so that we could name him, talk to him and show him our love. A boy, we named him Efrain Alejandro “Alex” , the name we always wanted for our first born son. What should have been a time for us to start decorating our nursery, buying cute clothes and preparing for his birth, we were instead planning his death. What could we do with the time we had, how could we show him we love him and remember him for the weeks or months ahead?
I am not angry, I do not blame God and I do not question why this happened to us. It did and we need to “decide to get better and not bitter”, I read this in a grief book and I have adopted it as my mantra. I already have a new love for my husband. Efrain has been amazing and I could not have asked for a more understanding and loving husband. I look at Elena and I know that I am blessed. She is the most beautiful and wonderful daughter that a mother could ask for. She is a miracle that came into my life and I hope that one day she knows how much she means to me, especially now. My family has been so caring, and my friends have shown me what unconditionally love means. People never cease to amaze me, neighbors helping take care of Elena, cards have come pouring in. I can’t be bitter when I see such love in this world. I only hope that Alex will know how many people loved him before he was born, I only hope that God will protect him and he will eternally live with my nephews, Jason and Kikillo, which I can only imagine will be filled with days of laughter, and that makes me smile.
Alex did a lot in 16 weeks. He traveled to Colombia, attended his Aunt Kim’s wedding, went on many walks with his sister Elena, celebrated his mommy’s 30th Birthday, visited his Nanny and Granddaddy at the beach and celebrated the 4th of July. Monday, July 6th he was born to God. He will never suffer on this earth, he will never know pain..he will only have memories of the love we had for him in his short 16 weeks with us. It was a “Sweet 16”, that is what I am calling it.
Many people have asked me if I wish that I did not have that sonogram, if I did not know that our baby had Trisomy 18, that way i could have enjoyed my pregnancy. I actually feel the opposite. I still love being pregnant and while I was scared after receiving the diagnosis, I actually think it made me appreciate pregnancy even more. Every moment I felt a flutter or just looked at my growing belly, I know that I was a mother. I think I packed all the joy of 9 months of pregnancy into 2 weeks. I touched my belly every minute, Efrain and Elena kissed my belly all the time and we read to Alex each night. Knowing about my son's fate also allowed me to start making memories when I otherwise would have just been preparing for them. I was fortunate to get in touch with an organization called "Now I Lay Me Down to Sleep". They have been featured on the Today Show and it is a group of volunteer photographers that take professional photos of stillborn babies in the hospital. They have also taken pregnancy photos and thus I contacted them to take pictures of Alex inside me. Those are the memories that I will have forever, and I could not be more thankful for Julia Pearson, the photographer that patiently worked through my tears and crazy Elena to take what I am sure will be photos that we will cherish for a lifetime.
Efrain and I are just started the healing process. I still cry a lot and while we know that this was a “fluke” as they call it and we can have more healthy children, right now we just want to remember Alex. We had him cremated and plan to celebrate his “Sweet 16” weeks that we were blessed to have the dream of him alive.