Tips

I read a helpful message back in January when Rachel first passed:

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious – just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.
When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don’t offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don’t say, “It’s God’s Will.” Even if we are members of the same congregation, unless you are a cleric AND I am seeking your spiritual counseling, please don’t presume to tell me what God wants for me. Besides, many terrible things are God’s Will, that doesn’t make them less terrible.

-Don’t say, “It was for the best – there was probably something wrong with your baby.” The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don’t try to comfort me by pointing that out.

-Don’t say, “You can always have another one.” This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, “Where’s the fork?” I would have died for this baby, just as you would die for your children.

-Don’t say, “Be grateful for the children you have.” If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

-Don’t say, “Thank God you lost the baby before you really loved it.” I loved my daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

-Don’t say, “Isn’t it time you got over this and moved on?” It’s not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it’s a part of me forever. The grief will ease on its own timeline, not mine – or yours.

-Don’t say, “Now you have an angel watching over you.” I didn’t want her to be my angel. I wanted her to bury me in my old age.

-Don’t say, “I understand how you feel.” Unless you’ve lost a child, you really don’t understand how I feel. And even if you have lost a child, everyone experiences grief differently.

-Don’t tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

-Don’t pretend it didn’t happen and don’t change the subject when I bring it up. If I say, “Before the baby died…” or “when I was pregnant…” don’t get scared. If I’m talking about it, it means I want to. Let me. Pretending it didn’t happen will only make me feel utterly alone.

Don’t say, “It’s not your fault.” It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring her safely into the world and I couldn’t do it. I was supposed to care for her for a lifetime, but I couldn’t even give her a childhood. I am so angry at my body and my actions you just can’t imagine.

Don’t say, “Well, you weren’t too sure about this baby, anyway.” I already feel so guilty about ever having complained about morning sickness, or a child I wasn’t prepared for, or another mouth to feed that we couldn’t afford. I already fear that this baby died because I didn’t take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn’t know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn’t the same as wanting my child to die – I never would have chosen for this to happen.

-Do say, “I am so sorry.” That’s enough. You don’t need to be eloquent. Say it and mean it and it will matter.

-Do say, “You’re going to be wonderful parents some day,” or “You’re wonderful parents and that baby was lucky to have you.” We both need to hear that.

-Do send flowers or a kind note – every one I receive makes me feel as though my baby was loved. Don’t resent it if I don’t respond. 
 
-Don’t call more than once and don’t be angry if the machine is on and I don’t return your call. If we’re close friends and I am not responding to your attempts to help me, please don’t resent that, either. Help me by not needing anything from me for a while. 
 

If you’re my boss or my co-worker: 

-Do recognize that I have suffered a death in my family – not a medical condition. 

-Do recognize that in addition to the physical after effects I may experience, I’m going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one – I need time and space.

-DO understand if I do not attend baby showers/christening/birthday parties etc. And DON’T ask why I can’t come. 

Please don’t bring your baby or toddler into the workplace. If your niece is pregnant, or your daughter just had a baby, please don’t share that with me right now. It’s not that I can’t be happy for anyone else, it’s that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there’s a good chance that I’m still crying every day. It may be weeks before I can go a whole hour without thinking about it. You’ll know when I’m ready – I’ll be the one to say, “Did your daughter have her baby?” or, “How is that precious little boy of yours? I haven’t seen him around the office in a while.” 


Do NOT say, “Please allow yourself time to grieve.” Every time I speak in sadness about my daughter.  What does that really mean anyway?!?  You want me to go and hide until I’m all better?!?  All I need is an ear to hear, nothing else. 

Above all, please remember that this is the worst thing that ever happened to me. The word “miscarriage” is small and easy. But my baby’s death is monolithic and awful. It’s going to take me a while to figure out how to live with it. Bear with me.

They Say Running is Therapeutic…..

I agree tremendously!  During the month of January while I was recovering from my surgery, I couldn’t wait to bust out and start running again.  The last day I ran was Christmas morning with Rachel.  That first run February 3rd was such a great moment and humbling too!  In just 5 weeks, I had gone from waddling pretty well 3 miles a day to barely being able to run 3 blocks!  This is horrible! I thought. I signed up for a half marathon that is in 8 weeks and I can’t even run a 1/2 mile! I decided I would get my butt in gear and ramp up my mileage so I would be in shape for this next race.  Running also gave me an outlet to escape from this world.  All that came crashing down about 3 weeks ago when I finished a 7 mile run.  My heel hurt.  I had a day of rest the next day and would run again on Monday so I didn’t think anything of it.  But when Monday came, my 3 mile run was extremely painful.  That’s when it hit me….I had my first running injury.  I was angry to have to take some time off.  Our stationary bike at home helped substitute my cardio, but every runner will tell you that a bike just doesn’t do it for a runner when needing to exercise. I tested my heel a week later with a 3 mile run, but the pain was still there.  Even walking was painful.  I decided to see a sports medicine doc.  I made an appointment for the following week.  Meanwhile, I kept biking until, a week ago, my darn bike BROKE!  Now I was really devastated!  What was I supposed to do for cardio!  I’m addicted to cardio!  Finally, Wednesday comes around and I see my doc.  A very easy run/walk the morning prior showed me that I was pain free, but I wanted to make sure nothing was still wrong before I really got back into running.  Dr. King was amazing.  He check not only my feet but my legs, knees, hips and back.  Since I was pain free he cleared me to run….SLOWLY  recover.  So what happened that made me get injured?  I did too much too fast.  The simplest rule a runner is NEVER supposed to break.  I did it because it was my escape, it felt good and helped me get through my day.  Yes, running IS my therapy.

Back to the Beginning

We got the complete autopsy results yesterday and it showed nothing more than the fact that Rachel died due to complications of her condition. Neither us or Dr. Koppell had heard from UCLA yet so he called them since it had been 8 weeks. Apparently their results were in the mail so he had them fax a copy to him. He called in the afternoon with their report. UCLA’s Cedar Sinai has a preliminary diagnosis of Uniparental Disomy 14 (UPD 14). They want tissue samples sent to them to confirm the diagnosis. I thought tissues had already been sent when she passed, but apparently it was just her x-rays. Ironically, it seems that UPD 14 has pretty much the same presentation at Jeune’s Syndrome, small rib cage, widened iliac bone and short limbs.   The only thing I haven’t been able to see about UPD 14 is Kidney problems, which Rachel had at birth. She also didn’t show a short stature which UPD 14 can show, she just had short limbs.  She also didn’t have any cranial abnormalities in her bones nor did she have any hernias which is consistent with UPD 14.  I know in the end it doesn’t matter what she had because it doesn’t change the fact that she is not here anymore, but I am bothered by this possible diagnosis, I guess it just puts me back at square one with everything.