Sunday, August 19, 2007 

Remembering Raphael


I read this poem and I just wanted to share it with you since it reflects my feelings aptly. I'm feeling particularly depressed today and tired after a marathon session of crying last night.

I Wish

I wish you wouldn't try to comfort me by saying something to try to make me be OK with my child's death. I am more comforted when you acknowledge how sad it is.

I wish you wouldn't feel so uncomfortable when I mention my child's name. I also wish you would not be afraid to speak my child's name. My child lived & it brings me comfort to hear their name.

I wish you wouldn't think that when we talk about my child, if I cry or get emotional that you have hurt me. The fact that my child has died is causing my tears. You have allowed me to cry & share my sadness with you & I am grateful because you are helping me to heal.

I wish you would accept that I have emotional highs & lows. Please don't think that if I have a good day my grieving is over, or if I have a bad day I need counseling or medication.

I wish you knew that the death of a child is different from other losses & must be viewed as the unique loss that it is. It is the ultimate tragedy & I wish you wouldn't compare it to the loss of a parent, spouse or pet.

I wish you wouldn't shy away from me. I feel alone enough missing my child, I feel more alone missing you also. And it makes me wonder if you think being a bereaved parent is contagious.

I wish you knew that all the crazy grief reactions I am having are, in fact, normal. Depression, anger, frustration, guilt, & the questioning of values & beliefs are all a part of grieving the death of a child.

I wish you wouldn't expect my grieving to be over in a few months. The 1st few years are going to be exceedingly traumatic & difficult for me.

I wish you would accept that like an alcoholic, I will never be "cured" or a "former bereaved parent". I will forever be a "recovering bereaved parent".

I wish you wouldn't measure my partner's grief against mine. We're trying to understand the differences in how we're grieving. You can help by caring for us both equally at this time of need.

I wish you would understand the physical reactions to grief. I may gain or lose weight, sleep all the time or not at all, be absent minded, develop a host of illnesses, be accident prone, sigh all the time, & over react to almost everything; all of which are related to my grieving.

I wish you would tell me if you are thinking of my child on their birthday, the anniversary of their death, or any special day. Be assured I will be thinking of them. Special days will be more difficult for me than other times. So if I get quiet & withdrawn know that I am thinking about my child & missing them terribly.

I wish you wouldn't expect me to get back to my "old self", and be the same person I was before my child died. I can't be that person again, I am now different. But if you can accept how I've changed, you may find that you like the "new me".

By Gary Vogel

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Wednesday, April 25, 2007 

You are irreplaceable, my firstborn


Today marks the third week of the birth of my angel....Raphael Roque. Birth...I’m not even sure that it’s the right term since Raphael was born straight to heaven. I’ve been dreading writing this post because it forces me to face reality....the reality that my baby who brought me and my husband so much joy and for whom we thought the future loomed so bright is no longer with us. I sometimes wake up dazed, fully expecting the cries of a hungry baby...a sound that have not and will never come.

I can still remember the day when my baby was diagnosed with having Edward’s syndrome during the seventh month of my pregnancy. The doctor advised my husband and I to prepare, both emotionally and spiritually, for the eventuality that our baby would only have a short life here on earth, that is if we even get to meet him alive. The odds were simply stacked against Raphael. But in spite of all the preparations, nothing could have prepared me for the deluge of emotions upon seeing the lifeless body of my son. Oh how handsome he was! With wispy hair, tender features and lips as red as a rose. It was truly gut-wrenching. I felt so helpless...I could not do anything to help save my baby, the baby whom my husband and I brought to life.

While my baby’s life may have been short, I will forever be grateful for his legacy. He has taught me how to love unconditionally...the way a mother loves her child, to see beyond his physical defects, see the beautiful person inside and love him with all her heart and soul.
I’ve always wondered why God took my angel away even before we got to meet him. I have this theory that maybe my son saw heaven and wanted immediately to play with other angels. Others say that maybe the soul of my son was so beautiful that God immediately wanted him by His side. Whatever the reason, one thing is for sure – Raphael is now happy in heaven, together with my father and brother, playing happily with other angels, waiting patiently for the day he eventually gets to meet his parents.

Oh how my heart aches so much for my baby. But for now, tears are my refuge and sleep, my comfort. To my precious baby Raphael Roque, I would like you to know that we love you and you will forever reside in our hearts. You are irreplaceable, my firstborn, my sweet angel Raphael. Till we meet again.

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Friday, March 23, 2007 

Our Precious Angel, Raphael Roque

The past 3 weeks have not been very easy for me and my husband. During this period, much time has been spent praying, soul-searching and asking for prayers from our friends. No words could adequately describe what we felt and are currently feeling during these most trying times. Enclosed is a copy of the e-mail we sent out to our family and friends. Please include us in your prayers.

Dear family, friends and colleagues,

You all witnessed how happy we were for the last 7 months because the Lord blessed our union with a child in Mar’s [this is my nickname - ladybug] womb.

However, as some of you may already know, this happiness was short-lived. The 6th ultrasound 3 weeks ago showed what could be the presence of an omphalocele in our son’s stomach. We immediately searched the web and found out that an omphalocele is a congenital (found at birth) malformation in which variable amounts of abdominal contents protrude into the base of the umbilical cord, in our son’s case, his stomach and intestines. As the fetus grows in pregnancy, the intestines grow and get longer and project from the abdomen into the umbilical cord. This growth is taking place from the sixth to the tenth week of pregnancy. Normally the intestines return rapidly into the abdomen by the eleventh week of pregnancy. If this fails to happen, an omphalocele is present. However, more than half of all infants born with an omphalocele may have other birth defects. Some of these defects may be serious. This was what alarmed us instantly. We kept praying and hoping that it would just be an omphalocele, with no other complications.

We then went to see a perinatologist 2 weeks ago for a high-level ultrasound. We received more shattering news. Our son did not just have an omphalocele, he has several other congenital defects as well: hypoplastic left heart syndrome (A rare but serious congenital heart defect. It is the most common cause of death from heart disease during the first week of life.), absence of nasal bone, clubbed hands coupled with clinodactyly, among others. Presence of all these symptoms are highly suspicious for the presence of Trisomy 18. At present, further testing is deferred until Mar gives birth and the cord blood could be subjected to Karyotyping in order to fully diagnose the presence of trisomy 18.
What is Trisomy 18?

At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with 46 chromosomes in each cell, two of each type. Each chromosome holds a particular "position" in the cell and carries certain genetic material. A trisomy occurs when a baby has three chromosomes in one position instead of the normal two.

The most common trisomy is Trisomy 21, also known as Down Syndrome, where a baby has three of the twenty-first chromosome. Trisomy 18 is the second most common trisomy and occurs when a baby has three of the eighteenth chromosome. This results in 47 chromosomes instead of the normal 46 in the affected cells. It is this extra genetic material that causes the problems associated with Trisomy 18.

Trisomy 18 is also called Edwards syndrome (or Edward's syndrome) and occurs in about 1:3000 conceptions and 1:6000 live births, as 50% of those diagnosed prenatally with the condition will not survive the prenatal period. Unlike Down syndrome, Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%)> live at least one year.

Most trisomies (about 95%) are full trisomies. That is, the extra chromosome occurs in every cell in the baby's body. This type of trisomy is not hereditary, and is not due to anything the parents did or did not do, and it is by far the most common type. In most literature, Trisomy 18 means full Trisomy 18.

This disease has been described as “incompatible with life.”

No one, not even the doctor, could assess our son’s percentage of survival. Other children with t18 and with no heart complications have survived for a few months, while others without the heart disease did not even make it to full term. Each story is different for each family.

Please don’t hesitate to ask us how we’re doing or to discuss our son’s current situation. Sometimes, talking about it is a big help. At this point, we cannot do anything but continuously pray for our son. Aside from our family, we also felt the need to inform our friends and work colleagues in order to avoid awkwardness, inform people about this disease, and more importantly, to ask for your prayers.

We hope that we get the chance to meet our son alive and for him to be baptized Raphael Roque Nuval Mance.

Sincerely,
"Hush! My dear; lie still and slumber;
Holy angels guard thy bed.
Heavenly blessings without number
Gently falling on thy head."
- by Isaac Watts

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About me

  • I'm ladybug
  • From Philippines
  • This blog provides a glimpse into the life of a lawyer married to a former RP badminton champion/coach. While I may occasionally talk about badminton, about law once in a blue moon, this is mainly a blog about my personal life and my advocacies. I am still trying to cope with the loss of my son, Raphael Roque, to trisomy 18. I may not fully understand God's plan for Raphael but I know that he is happy in heaven right now playing with his angel friends.
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