International SIDS & Stillbirth Conference in Baltimore

In October, I bravely left my family for the first time, and traveled to Baltimore (about 3.5 hours away) for 4 days to attend the 2012 International Conference on SIDS, Stillbirth, and Infant Survival.  One of the organizations that I serve on the Board of Directors for, The Star Legacy Foundation (www.starlegacyfoundation.org), was part of the conference.  It was so inspiring to go and meet these interenational researchers and doctors who are making such amazing strides in all the different aspects of the various preventable causes of stillbirth.  I also met some amazing parents, who, like me, are trying to make a difference in their own small way. 

At the Remembrance Ceremony Friday night, I even had one parent and grandparent recognize me from this blog.  I was a little concerned because sometimes, I can be very honest, blunt, and uncensored with my feelings.  But she explained to me that it was helpful for her to read those parts and it helped her find ways to help her own daughter as she was hurting.

Irelynn is 9 months old!

Irelynn just makes me smile all the time.  She is such a happy baby.  But there is also a bittersweetness to this happiness.  I still think about her big sister.  I wonder what she would be doing right now.  I wonder why I am not dressing Irelynn in Savannah's hand-me-downs instead of purchasing everything new for Irelynn.  I think about the unsuspecting comments we get about having another baby and how "isn't it great that we have one of each?"  I know better.  I know people don't mean anything by this.  But it still hurts, even just a little.

Chance Meeting with Baby Bode

Yesterday, as I quickly ran into my neighborhood grocery store to pick up some cookie dough to bake cookies with my family, I ran past a mom shopping.  She has a beautiful little girl who looked about 4 and she was actually 4 as she later told me.  Her mom was a beautiful lady with long curly brown hair and a kind smile.  In her shopping cart, was a baby carrier with a nice chunky little boy in it.  At first, I smiled at how well behaved the young girl was while her mom grocery shopped.  When I would go out with Jeremy, he acted like that maybe 1 time for every 4 or five times, which is why I mostly grocery shopped alone.  As I grabbed what I came in for, I turned down the aisle and headed up towards the checkout lanes.  I walked past the lady pushing her cart again and I got a good look at the little boy.  He had Down Syndrome.

I remarked to the Mom was a beautiful little boy he was and she was very nice and smiled but I'm sure she was curious why I would pay such special attention to her son who clearly had special needs and not to her normal daughter who was just cute as a button and eager for my attention.  She told me both of their names and ages and while I wanted to talk more, my eyes and attention just kept going back to Bode.  He was 10 months old and as tears filled my eyes, Bode's face went into a huge smile at me.

I felt I needed to say something to this Mom, so I carefully explained that we had a daughter with DS who had passed away.  She said she was sorry and I smiled at her and told her she was very blessed.

There are many times that I miss Savannah, but right here and right now, I was faced with what would have been my worst fear - having a child with special needs and being judged by the community around me.  When I was pregnant and test after test seemed to indicate that Savannah had DS, I grew unsure of myself.  Was I strong enough to be the Mom of a child with special needs?  How could I protect her from ignorant people?  How could I watch her struggle as a child not being able to do things that her brother could do?  What was going to happen after Eric and I were gone?  Who would take care of her?  What would her life as an adult be like?  Would she ever find true love, get married, and be able to have children?

As I looked down at the beautiful bright blue eyes of Baby Bode and his face lit up into a huge smile at me, I was face to face with something that for the  last 3 years I have dreamed about and at times, would have bitten off my own arm to experience.  All I saw in Bode's eyes was unconditional love and hope and a life full of possibility.  The Mom looked relaxed and happy to be shopping on a Thursday night with her children. 

Whether or not Savannah was born with DS was irrelevant.  We had accepted that she would have it and planned for her to have it.  We loved her because of it.  When Savannah was stillborn, it was devastating.  Whether she did or didn't have DS didn't matter.  But throughout our experience, Savannah opened our hearts and minds to children and people with special needs, especially Down Syndrome.  We were ready.  We were prepared.  We would have been good parents to her, especially if she had Down Syndrome.  No one wants to have a baby with challenges and struggles.  But I didn't see Savannah's life that way.  I saw her a life full of possibilities and hope.  I saw the opportunity to educate others and do something wonderful.  But I was never given that chance.  She was never given that chance.

Even now, three years later, I miss Savannah deeply.  I miss the lifetime of memories that we didn't get.  I wonder all the time what she would be like as a 3 year old.  Would she be in dance class?  Would she have liked preschool?  Would she have let me paint her nails or teach her dance or gymnastics? Would she still tolerate me with my hair bow obsession?  I still cope and deal with all that we lost that day.  Tears still fill my eyes and my pillow when I think about what could have been...what SHOULD have been our family right now.

And I know many of you are thinking to yourself, "But you have another daughter, a new baby that you can have those experiences with.  Get over it."  But I can't.  It's impossible.  I can't forget or get over Savannah.  She is ingrained in my heart and in my thoughts.  She was my daughter, my oldest daughter and her life ended far too soon.  It ended before it even began.  As I looked up at Bode, I saw the love in his eyes and his smile warmed my heart.  Those were the things that I miss the most about Savannah - those are the little things I would have given anything to enjoy and savor.

So to anyone who thinks that I am not grieving correctly or I need to move on, live my life and feel my feelings and you will never say that to anyone ever again.  You simply cannot understand that pain and hurt and the deep sorrow a Mother feels when her child is not here.  I absolutely adore Jeremy and Irelynn and I cherish every single second with them.  But there is a bright eyed little girl missing from our family and a lifetime of experiences that were stolen from us that we can never get back.  I was ready to be the Mom of a child of special needs.  God made me ready.  But I wasn't given the chance.  I was never allowed the opportunity to show my capabilities in times of challenge.  Why?  We loved Savannah unconditionally.  I would have given my own life in a second to take her place.  I would give my life today for her or for any of my children.

To Bode's Mom, God Bless You!  God Bless You for choosing life for baby Bode.  I'm sure you were encouraged many times, as I was, to terminate your pregnancy because he had Down Syndrome.  God Bless You for putting your baby's life above your own, accepting and loving him, and being the best Mommy to him.  And God Bless You for running into me and allowing me the privilege of experiencing Bode's smile.  It made my heart warm in a way that I couldn't have imagined.

Irelynn turned 6 months old!

Can you believe that Irelynn turned 6 months old already?  What an amazing blessing she is to our family and friends!!

‎20 Things Grieving Parents Wish You Would Remember

‎20 Things Grieving Parents Wish You Would Remember

1. I wish you would not be afraid to mention my child. The truth is just because you never saw my child doesn't mean he or she doesn't deserve your recognition.

2. I wish that if we did talk about my child and I cried you didn't
think it was because you have hurt me by mentioning my child. The truth is I need to cry and ...talk about my baby with you. Crying and emotional outbursts help me heal.

3. I wish that you could talk about my child more than once. The truth is if you do, it reassures me that you haven't forgotten and that you do care and understand.

4. I wish you wouldn't think that I don't want to talk about my
child. The truth is I love my child and need to talk about him or her.

5. I wish you could tell me you are sorry my child has died and that you are thinking of me. The truth is that it tells me you care.

6. I wish you wouldn't think what has happened is one big bad memory for me. The truth is the memory of my child, the love I feel for my baby, the dreams I had and the memories I have created for my child are all loving memories. Yes there are bad memories too but please understand that it's not all like that.

7. I wish you wouldn't pretend that my child never existed. The truth is we both know I had a child growing inside me.

8. I wish you wouldn't judge me because I am not acting the way you think I should be. The truth is grief is a very personal thing and we are all different people who deal with things differently.

9. I wish you wouldn't think if I have a good day I'm "over it" or if I have a bad day I am being unreasonable because you think I should be over it. The truth is there is no "normal" way for me to act.

10. I wish you wouldn't stay away from me. The truth is loosing my child doesn't mean I'm contagious. By staying away you make me feel isolated, confused and like it is my fault.

11. I wish you wouldn't expect my grief to be "over and done with" in a few weeks, months, or years for that matter. The truth is it may get easier with time but I will never be "over" this.

12. I wish you wouldn't think that my child wasn't really a child and it was blood and tissue or a fetus. The truth is my child was a human life. My child had a soul, heart, body, legs, arms and a face. I have seen my child's body and face. My child was a real person.

13. My babies due date, Mothers Day, celebration times, the day my baby died and the day I lost my baby are all important and sad days for me. The truth is I wish you could tell me by words or by letter you are thinking of me on these days.

14. I wish you understood that losing my child has changed me. The truth is I am not the same person I was before and will never be that person again. If you keep waiting for me to get back to ""normal" you will stay frustrated. I am a new person with new thoughts, dreams, beliefs, and values. Please try to get to know the real me-maybe you'll still like me.

15. I wish you wouldn't tell me I could have another baby. The truth is I want the baby I lost and no other baby can replace this baby. Babies aren't interchangeable. Besides, you do not know whether we have fertility problems too.

16. I wish you wouldn't feel awkward or uncomfortable talking about my baby or being near me. When you do, I can see it. The truth is it's not fair to make me feel uncomfortable just because you are.

17. I wish you wouldn't think that you'll keep away because all my friends and family will be there for me. The truth is, everyone thinks the same thing and I am often left with no one.

18. I wish you would understand that being around pregnant women is uncomfortable for me. The truth is I feel jealous.

19. I wish you wouldn't say that it's natures way of telling me something was wrong with my baby. The truth is my baby was perfect to me no matter what you think nature is saying.

20. I wish you would understand what you are really saying when you say "next time things will be okay". The truth is how do you know? What will you say if it happens to me again?

May 18, 2012

It is nearly 2am as I type this blog and the day has been emotionally draining to say the least, yet I am still awake with my thoughts.  It was 3 years ago today that I last held my baby, her lifeless body dressed in a cute overall outfit and my hands holding that small white bow on her head.  She was beautiful and perfect and appeared to be asleep, only she wasn't.  She was gone.

My heart breaks and tears fill my eyes when I think back to the details of those two days and every single detail of what happened.  For some people, they remember being in a fog, which I think sometimes might have been easier.

As a family, we met out at the cemetery at Savannah's grave site.  We tied 3 big cheery birthday balloons and brought her some beautiful flowers. 

We set off 3 Chinese lanterns, each one carrying one year's worth of pain, sadness, grief, anger, love, hope, and peace up to Savannah in Heaven.

We each enjoyed a bite of Savannah's chocolate cake that her big brother picked out at the same time as watching the lobsters in the tank across the aisle in the grocery store.  It's hard for him because he doesn't remember her and he doesn't have any questions.  He tells me "Mommy, don't be sad. Be happy!"  I tell him that it's OK to be sad that Savannah doesn't live here on Earth, but somehow, it seems above the head of a 4-year old.

Afterwards, we went to the Olive Garden for dinner.  We all ordered food, but really none of us ate it.  We just weren't in the mood, although some Italian comfort food seemed like a good idea at the time.  The waiter was especially nice to us even though we were having a rough time.  With the check, he included a hand-written card that said "May the four of you have a blessed evening."  But there aren't four of us.  We are a family of five.

And we came home and put the kids to bed, prepped for the next day, and went to sleep.  At least Eric went to sleep.  I couldn't sleep.

I was angry and hurt that no one had called or emailed or sent a card to acknowledge that today was Savannah's 3rd Birthday in Heaven.  I was disappointed in my family, in my parents, in my sisters.  I was disappointed in my husband's family, in my friends, in our friends.  I felt like my biggest fear was coming true ~ people were forgetting Savannah ever existed.

I get that people don't know the right thing to say.  I can understand how some people might feel like bringing it up might make me sad.  The truth is, I will forever be sad, especially on these two days, and ignoring it makes it worse.  I WANT to talk about it and I want you to listen.  I NEED to talk about it.  I am on a journey ~ one similar to motherhood.  Once it begins, it never ends.  Jeremy and Irelynn will never know their sister, not in their lifetime.  It's not about me (Shannon) looking for attention.  It's about someone who was part of our family, someone very much loved and wanted, is gone and is never coming back.

Yes, I have another child and I am so grateful.  But I will NEVER stop missing or loving or yearning for my daughter, Savannah.  If I have 10 more daughters, the dates of May 17-18 will always be emotionally draining and sad for me.

What can you do?  Put special dates and anniversaries on your calendar for someone you know who has lost a baby and make the effort to reach out to them and let them know you are thinking of them, that you care, and that you haven't forgotten their child.  And don't be alarmed if tears arise.  Tears are signs of healing, just as loving supportive words and sentiments.  In fact, they help people heal more than you can imagine.

Mother's Day Reflections 2012

Mother's Day is just a few days away and I find myself overwhelmed with feelings.  I am so grateful to have been blessed with 2 beautiful children here on Earth, but I am always reminded that someone is missing from our family pictures.  Most of my blog readers are here because you know me personally or you have suffered the loss of a child.  No matter how you found me, I'm glad you are here.

For those who have not lost a child themselves, I'm sure you know someone who has suffered a loss, whether it be through miscarriage, stillbirth, SIDS, or SUID.  Our losses are very different, but we all share the same feelings.  We all share a lifetime of pain and sorrow because someone very important to us is missing.  It doesn't matter if you were pregnant for a week or 40, whether you gave birth to a live baby or a silent one, if you brought your baby home from the hospital or your baby lived it's entire life in the hospital.  Mother's Day is a reminder that someone is missing.

I am very fortuate.  I have an energentic little boy and a sweet newborn baby girl to hold on Mother's Day.  But I have many friends who do not.  This day is something they dread all year long.  It's hard to look around and see families with children who are smiling and happy and giving their Mom's handmade gifts and cards.  It's hurtful and I'm sure many of those friends will spend the day at home, away from the reminders of the day.  They are thinking to themselves "Am I a Mother?"

Those friends are just as much Mother's as you or I and they deserve to be celebrated.  They NEED to be recognized and celebrated.

Mother's Day is a day when we recognize and thank our Mothers and Grandmothers.   Some of them are also missing from Earth and this day will also prove to be a challenge and reminder of their grief and loss.

There are still others who dream of being a Mother, but struggle with infertility.  I was here myself just a year ago, and the year before that.  This day is a symbol of something they want so badly but have yet to acheive.  They cling to the hope of the children that are alive within their hearts and in their dreams, but have yet to make their Earthly appearance.

The most thoughtful and compassionate thing you can do on Sunday is to recognize with love and friendship those who are Mother's in the traditional sense, but also recognize and acknowledge those who hold their babies in their hearts.

There is a great organization, Star Legacy Foundation, which I am proud to serve on the Board of Directors.  They have a great page of suggestions of things you can do and say to those around you who may find themselves alone, isolated, or hurting this Mother's Day.  CLICK HERE for a list of Do's and Don'ts on special holidays or just everyday.  I promise you that reaching out to her will have a profound impact and mean more to her than you can imagine.  Speak with love, especially on this day, with these Mom's.  Unless you have walked this road, you really don't know what it's like ~ I promise.

Happy Mother's Day to all Mothers; no matter where your children live, they are always alive within your heart.

~ Shannon

Savannah's Life ~ nearly 3 years later

As we are approaching Savannah's 3rd Birthday in Heaven, I have been reflecting on her life and how it changed me and the lives of so many others.  As I write this, I am still unsure of where I am in the grieving cycle.  I still have bad days and sad days; days when I would give anything to go back in time to May 17th and done something to save her life.

Nearly 3 years later, I have felt a need to release ~ to release some of the anger, release the hurt, release the pain, release the anxiety, release the sadness, and release the grief.  I give it all over to God to guide my heart and my life just a little closer to Him.  I try not to think about the sadness of what was lost in Savannah's life and replace it with gratitude for the time that we did have and what her brief life brought into your world and our hearts.

Savannah is at peace in a world with no pain and no sorrow and although we feel those things here, we look forward to the day when we can all be reunited together again as a family for all of eternity.

I have written about this before, but each of us has purpose and meaning to our lives.  Savannah fulfilled God's purpose, but we still have work to do.  There are people to help, strangers to become friends, and hurts to heal.  We each have a mission.  What is yours and how do you plan to use your life to fulfill it?

Tomorrow, we will gather with friends and family to Welcome Irelynn to the World.  It is bittersweet in many ways, but mostly because we will gather to celebrate Irelynn's life in the same place where we last gathered with friends and family following Savannah's funeral almost 3 years ago.

Cherish each moment with your family and remember to always be thankful for your blessings in life.  If you have a roof over your head, food in your stomach, clothes in your closet, and the love of family and friends, then you are truly blessed.

~ Shannon

Happy Easter

Christ is risen!  He is truly risen!

This is our family outside of Church on Easter Sunday morning.

After Church each week, we visit Savannah.  For some reason, today was especially hard.

This was our family Easter picture just 3 years ago, before our world was completely shattered:

 And now, we have a new precious miracle to love and enjoy.  We still miss Savannah every single day, but our hearts have widened to embrace and love Irelynn.  She is so special to so many people.

Happy Easter!  I'm so proud that we have chosen to teach our children that these holidays are not about Easter Baskets and candy, but rather what Jesus endured for our sins so that we could live eternally in Heaven with Him and with Savannah.

~ Shannon

Happy 3 months to Irelynn!

I cannot believe we are here, but Irelynn is 3 months old!  The time has gone by so quickly.  As I look back, it seemed as though my pregnancy crept by at the pace of a snail, and with good reason.  However, now that Irelynn is here safe and happy and healthy, the days and weeks have just flown by!  I'm torn because I am enjoying every second and at times I wish she would slow down, but I am so eager for the future.  She has developed her own personality, but overall she is such a happy smiley baby!  She loves her big brother, she sleeps 9 hours through the night, and loves to coo and dance to music.

At her last appointment, on her 3 month birthday, she weighed in at 12 pounds, 7 ounces and is meeting and exceeding all milestones.  As for me, I would be lying if I said I wasn't a total mess.  This is not only a milestone for Irelynn, but also this marks 3 months that I have not totally freaked out, wrapped my child in bubble wrap (although the thought has crossed my mind a few times), or refused to leave the house for fear of the world.

I tried to explain this to a friend of mine recently ~ I really thought my biggest challenge in life was getting pregnant.  Once I got pregnant, my worried immediately turned to staying pregnant.  After that, it turned into having a safe delivery.  After she was home from the hospital, I became fearful of SIDS, cancer, car accidents, viruses, and anything that could potentially harm her.  My pediatrician gave me a stern talking to about being overprotective.  It was easy for him to say ~ he had never buried a child or taken just about everything in life for granted just to have it ripped out of your hands when you least expected it.

But just like I did when I was pregnant, I pray to God.  I thank him for today and I pray that he will give me one more day with my family.  I am thankful for the gift of today because tomorrow is never for sure.  Sometimes I have to stop myself from those anxious thoughts once a day and sometimes 25 times throughout the day, but when I pray, it seems to end those anxious thoughts and brings me a sense of peace.  Just like with my pregnancy, I can only control so much and the rest is up to God.  He gave my husband and I three of the most precious gifts ever and we make sure they each know every single day that they are a special gift from God.  Throughout all of the pain and sorrow, we are filled with faith and hope for the future.  I have Savannah and all of the lessons we have learned from her life to thank for that.

~ Shannon