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Archive for the ‘postpartum depression’ Category

Last week, Dave and I took a Babymoon trip to Florida. We flew into Miami stayed for a few days in South Beach then drove south into the Keys for two days. We had a lovely time. The weather couldn’t have been better, just what we needed to get through the rest of this crazy cold winter in Vermont. The last time we were in Florida was when we took Ella to swim with dolphins in Key Largo at Island Dolphin Care. Island Dolphin Care is a magical place where dolphin therapy brings children with special needs, children at risk, wounded veterans and their families joy and the discovery of new abilities. http://www.islanddolphincare.org

Ella was on our minds the whole trip. Driving down into the Keys, Dave and I both cried off and on thinking about the beautiful experience Island Dolphin Care provided for our family. Ella loved the dolphins, the warm water and the fabulous staff that worked with her for the 5 day camp. We had planned to take Ella back last year but she died two weeks before our travel plans. Our drive was emotional, cleansing and connected us to some very sweet memories with our beloved daughter.

One thing that Dave and I noticed during our trip was the surprising number of children with disabilities that we encountered in restaurants, on the beaches and shopping in South Beach and Key West. Every time I saw a family with a kid with a disability my heart and soul warmed knowing the amazing opportunity to learn unconditional love that special needs families have. I watched a handsome teenage boy play with his autistic sister in the waves on South Beach. I watched a beautiful young girl in a wheel chair with her Mom and Dad at dinner. She reminded me so much of Ella with her radiant smile and graceful slow repetitive movements. I watched my beautiful husband help a young disabled boy and his helper down the stairs to the breakfast table in our hotel. Each time I had one of these enchanted encounters I felt thankful for Ella and all she taught me about love, life and what is truly important. However, these meetings also made me miss her terribly.

I also started thinking about an experience I had twelve years ago when I was pregnant with Ella.  I was just about 9 months and Dave and I were walking together in a mall. We saw a family with a young boy who was very severely disabled. I remember stopping in my tracks as an overwhelming fear washed over me. I was thinking, What if I have a child who is severely disabled? How would I cope? Does life go on? Oh, if I could only have a conversation with my 29 year old self. I would explain that having a child with severe disabilities doesn’t ruin your life, it gives your life a much greater purpose. A dear friend gave me a quote a few months after Ella passed, I believe it speaks to the message that I am trying to convey with this post.

“The most beautiful people we have known are those who have known defeat, known suffering, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and understanding of life that fills them with compassion, gentleness and a deep loving concern, Beautiful people do not just happen.” Elisabeth Kubler-Ross11021113_10206190381380857_7022708703687442587_nDay 3 Water (23)

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385016_4737579919801_1728529784_nFor 11 years, I have been trying to find it in my heart to forgive the midwife and medical staff that were responsible for Ella’s birth injury causing her cerebral palsy and much heartache and pain. I have gone to therapy about it, silent mediation retreats, practiced many hours of yoga and repeated loving kindness mantras all in an attempt to forgive those responsible. Very often I feel as if I have been successful at forgiveness, however being pregnant and visiting the obstetrician has my resentment and fear raring it’s ugly head. It was just this past week that I realized that I was focusing my forgiveness on the wrong people. Yes, it sounds ideal to be able to forgive those responsible for Ella’s birth injury. To be able to think about her birth and not feel sad, scared, angry and helpless. However, it occurred to me that forgiving myself for having all of those unpleasant feelings is probably the likely first step to true forgiveness. I have been through a lot in the past 11 years since Ella’s birth. Unpleasant, yucky feelings are bound to surface when I reflect back on Ella’s tragic birth injury, the struggles in her life and her too soon death. Working on forgiving myself for having unpleasant feelings needs to come first. Sending myself loving kindness knowing that what I am feeling is natural. I am not a horrible, grudge holding person. I am human with the huge task of moving forward after several  tragic events in my life.

For many years whenever friends announced they were pregnant I would feel jealous and envious for their wonderful news. I felt like a spoiled child who locked herself in her room crying at how unfair life is. How is it that people can have two, three or even four healthy children and I can’t even have one? This, of course, made me feel like a horrible person who could not be joyful for my friend’s good news. Always, however, when I met the new baby my heart would melt and I would fall in love with the new bundle and feel nothing but joy for my friends. This is ok, it’s ok to feel this way, I forgive myself. I know my dear friends understand my pain they hold nothing against me and now so do I. Acknowledging these unpleasant feelings and giving them a name seems to be my first step in letting them go. Or perhaps not, acknowledging the feelings, recognizing that they are there and not letting them take over my life may also be the answer. Whatever the the road to forgiveness may be, I will continue move forward. I will offer myself forgiveness, recognizing that suffering is all part of the human experience. How it effects me is my choice.

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1504541_10202816247229612_1982157284_nOver the past six weeks, I have been seeing a psychologist to help me work through some of the trauma of Ella’s birth injury, her death and the miscarriage in June. Going to the obstetrician for this pregnancy has caused me a lot of anxiety. The first few times that I went for a check up my blood pressure was very high. High blood pressure is very unusual for me and it occurred only when I went to the obstetrician. White coat syndrome, I suppose. So about six weeks ago I started seeing a psychologist who was recommended by a dear friend. In my sessions I have been doing Eye Movement Desensitization and Reprocessing Therapy (EMDR) http://www.emdr.com/general-information/what-is-emdr.html. My understanding is that EMDR is very good and effective for specific incidents of trauma, like Ella’s birth, Ella’s death and my miscarriage. The therapy, apparently, is not as effective for folks who have had long periods of trauma like a very traumatic childhood. Regardless, it has really helped me get a handle on my anxiety. My last two obstetrician appointments have gone well and my blood pressure has been normal. I still have much more work to do. The thought of returning to the hospital where Ella was treated to deliver this baby causes me some seriously strong negative emotions. 5 months to work on that, one step at a time.

At my last appointment the therapist and I talked about handling the holidays. She shared with me that she lost her daughter 8 years ago to a rare heart condition. (crazy huh?) She asked if she could share with me what she does to honor her daughter at this time of the year. Of course I was happy to hear about her tradition and learn from someone who has been in my shoes. She said that throughout her life, her daughter amassed a beautiful collection of earrings. Each year, since her daughter’s death, my therapist puts up her daughter’s Christmas stocking and buys a beautiful pair of earrings to put in her stocking. Then, my therapist borrows the earrings. This beautiful story felt like a huge breath of fresh air to me. Whimsical and fun, just like celebrating with Ella. Just this week I was digging through a cedar closet in the basement where I keep our christmas decorations and Ella’s christmas stocking fell out. I think Ella likes the idea, too. She did have a beautiful collections of bracelets and nail polish.

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Bahamas Thanksgiving 2012

Over the past few months I have been trying to live with Ella’s words as my mantra,”Choose Love, at every turn. No matter what, no exceptions.” However over the past few days Sam Shepard’s words are over-riding Ella’s “Life’s a bitch with no prenup.”  Halloween was very difficult. I miss Ella every second and Halloween is just the beginning of the holiday season that Ella and I loved to celebrate. On Sunday, instead of sorting candy (trying not to eat it) and putting away Halloween decorations with Ella, I was preparing to speak about Ella at a memorial service.  The service was for all those who died in hospice care this past year. It was a beautiful service, although very sad, calm and dark. All of the things that we made sure Ella’s memorial services were not back in May. Dave and I spoke. I spoke about Ella, her loving nature and the positive impact she’s had in the community. Dave read one of her poems. We did it.  It was very hard, we choked back tears, but we got through it. Everyone in attendance was very touched and thankful to learn about our amazing girl and her incredible short life. However, for me it was a reminder that she is gone forever. I felt very, very alone in my grief. Silly because I know in my heart I’m not. I’ve heard it many times from support groups and others who have lost loved ones, that hardest time is 6 months to a year after you loose someone. The world moves on, many of the calls stop and people go back their busy lives. I sometimes feel forgotten and worst of all Ella feels forgotten.

Yesterday before the memorial service I decided I wasn’t going to smile all day. Life’s a bitch with no prenup was going to be my manta. I see many people all of the time who never ever seem to smile so I figured why can’t I be one of them today. I have a lot to not smile about– loosing Ella and having a miscarriage three weeks after she died. I failed miserably. I like smiling, smiling is my favorite ( to quote my favorite xmas movie to watch with Ella). Frowning isn’t really in my nature and Ella being such a powerful being has been re-enforcing her wise words in my head. “Choose love, at every turn. No matter what, no exceptions.” I will be ok, I always am. I will treat myself with loving kindness and take a lot of naps. Also, I just called a travel agent about a trip to the Caribbean Islands over the holidays. “Choose love, at every turn. No matter what, no exceptions.”  “Choose love, at every turn. No matter what, no exceptions.”  “Choose love, at every turn. No matter what, no exceptions.”

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Today I turn 40. Wow 40! It’s good, all good. My thirties were hard. Ella was born when I was 29, I spent the first 5 years of my thirties wallowing in and recovering from deep, dark postpartum depression. The second half of the decade I was figuring out how to be a Mom of a child with special needs. I can honestly say I am looking forward to the next ten years. I have been through hell, I survived, I am ok and now I am ready to be perfect.

When I look at Ella I see my beautiful, perfect child who is so brave and has overcome so much. I don’t see her crooked spine or her lack of speech or motor skills, I see my hope. She is a bright light, an inspiration. My reason for waking each morning. She is perfect.

When I look at my husband I see greying hair, IMG_7028lines around his eyes, a body that is a little less toned then it used to be and perfection. I see a man that supported me through a depression so deep that I couldn’t move for two years. I see a man that put his career on hold to care for Ella giving her a strong foundation of health and happiness. He is perfect.

When I look at my family, friends and strangers I see beauty. I see their perfection.

When I look at myself, I see a woman that has been through a lot. I have cried a lot, screamed a lot, cursed a lot, slept very little and laughed a fair amount too. However, it’s hard to see my own perfection. I notice the 5 lbs I wanted to lose before I turned 40 and the blemish on my forehead. This is not fair to myself, I deserve the same treatment that I give to others. So on my 40th I give myself the gift of perfection. I am perfect, just the way I am. I will spend the next ten years reminding myself of this everyday.

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IMG_6996Today, I took Ella to the doctor, our 5th trip in 2 weeks. She’s had a cough and a cold for far too long. I’ve been taking her in every few days to have her lungs checked making sure they are clear and healthy. This morning’s trip was because she had a very big seizure upon waking, it freaked me out , I wanted to have her checked. She is fine, just the start of her normal seizure cycle that happens every three months. She will have seizures for about a week, be very tired for a week and then be fine for another three months. It’s how our world turns.

However, while I was sitting in the doctor’s office with my hair pulled back in a messy ponytail, my pajama top on, and dirty sweat pants, I saw how others can think my world has stopped turning. There were two very well dressed ladies with their beautiful children waiting for appointments. One of the ladies was pregnant. The two were discussing the sex of the unborn baby, if the pregnant lady knew what she was having. She didn’t and wasn’t going to find out. Her friend said, “That’s so fun to have a surprise at the birth, just as long as it’s healthy, right?” As this phrase was spoken, both of them looked at me with pity. I wanted to sink under my chair, disappear and cry. This is a phrase that is spoken over and over and over to and by pregnant ladies everywhere. Kim Kardashian even said it about her unborn baby in an interview on E. “It doesn’t matter what it is, as long as it is healthy.” UGH!

And what? What will happen if it’s not healthy? You will end up like me, going out in public with messy hair and dirty sweat pants! Your world will stop turing. Well, yes, yes it will. You will feel shattered, broken, and depressed for sure. You will be lost as you bring your damaged child home. You will spend the first year of your child’s life searching for answers and cures. However, you will also end up with a purpose, something to live for that is so much bigger then yourself. You will find out who your true friends are, how strong your marriage is, the importance of a positive attitude and how incredibly powerful you are. Your world will start turning again, it will never turn the way it did before, but believe me it will turn.

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My senior year of high school 1991. Almost ready to escape the cage.

My senior year of high school 1991. Almost ready to escape the cage.

Disclaimer: This is a negative post. The negativity is a result of my own mind, thoughts and actions, MY OWN ISSUES. No one is responsible for my negative attitude but me. AND…As I sit here writing this post Ella’s fabulous teacher and paraeducator just texted me an incredible photo of Ella in the classroom surrounded by her peers helping her with a school project. 🙂 

Sometimes I have a hard time taking Ella to school and dealing with the “ins and outs” of having a severely disabled kid in the system. I knew this would happen because I have issues.

1. There are many, many parents at Ella’s school who I have connected with who are wonderful, encourage inclusion and treat Ella and me with love and compassion. However at times I’m uncomfortable interacting with other school parents. I don’t like the looks of shock and pity that I get as I am struggling with the stupid heavy doors to get her in the school. Please don’t stand there, help me with the door. Give me a smile. I am aware of my difficult situation and looks of pity are not helping lighten my load. The whole yucky situation makes me feel like I am in middle school again.

2. I hate that Ella is mistaken for the other severely disabled child in the school all of the time. I hate that when I correct people they act hurt and walk away before I can introduce Ella to them.

3. I hate that I had to have a meeting with administrators about the fire drill/emergency evacuation procedures for Ella. The fire marshal suggested that if Ella is on the 2nd floor during an emergency she could be left in the stairwell until the fire/police arrive, since the elevator cannot be used during an emergency. This suggestion is completely unacceptable to me and frankly makes me sick to my stomach. Of course the school administrators agreed with me and were just as sick to their stomachs about the fire marshal’s suggestions. We agreed on another plan to get Ella out of the building quickly and safely. But really, leave Ella in a stairwell, I don’t think so!

4. I hate that I feel guilty about Ella’s wacky sleep schedule. I feel bad when she sleeps till 1:00 and I can’t get her fed and into school before the end of the day. I hate having to call and explain that Ella had another bad night and won’t be in today. Of course the school completely understands and has been nothing but supportive of Ella and her needs. They have seen that when we let Ella sleep her own unexplainable schedule she remains healthy and when we force her to wake up and go to school she gets sick. They have stated to me over and over that Ella’s health comes first.

5. I hate that I hated school as a kid. I hated the smell of the building. I hated the fluorescent lights. I hated the confinement of sitting in a classroom. I hated that I had to be quiet. I hated that I had to leave my Mom. I hated that I didn’t understand math. I hated the cliques and social games. I hated it all. It wasn’t until college that I began to love learning. In college, I spent most of my day in a dance studio and took classes on art and music. I got extra help in math and learned to tolerate it. Of course this is not the case with Ella. She likes school. She loves the interactions with her many friends. She loves the stimulation provided by her teachers and paraeducator and, dare I say it, she likes being away from me for a few hours (UGH!) I hate that I feel I may be projecting my discomfort of school and my negative experience on Ella. I wish that I could approach Ella’s schooling with equanimity and not bring my past baggage into her present experience.

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