Monday, December 28, 2015

Survival Skills

I think some of the worst parts of learning to navigate the new reality of life without a child you love happens during the holidays. I would like to share with you some of the lessons my husband and I discovered early on with the caveat that every grieving parent is different.

1) If it doesn't harm you or others, isn't illegal, and it helps you navigate life, do it. What I mean by this is if it helps you to hang a stocking, buy the perfect gift, buy a Christmas ornament, decorate an empty chair at the table in honor of your child it is ok to do. Brush off well meaning people that think you are dwelling on your loss, most of the time they are simply uncomfortable or have no yardstick to understand what you are going through.

2) Be cautious with large gatherings, whether public or family. The expectation is to pretend happy. If you feel up to going, go. If you do not, I give you permission to stay home. If you have a spouse or significant other or even an older child, set up a secret signal to indicate that you need a time out or need to leave. Gatherings are easier when you know there is an out if you need it- if possible the other person comes up with a reason to leave (the one who is not triggered and more capable of talking coherently).

3) Come up with a placeholder for your child. Family gatherings can be very hard on a parent who has lost a child. Weddings and holidays are minefields because everything about them is hard- 1)knowing that if your child were here, this is exactly where they'd be 2) in milestone celebrations the reality that you child will not graduate, have a sweet sixteen or quinceanera, or get to marry and 3) the formal family picture where all the grandkids except yours is lined up.

4) It is inevitable that your children will be asked to sit in a family formal portrait, plan for it. Make a placeholder if you prefer (a toy or picture that stands in for your child) and if you can't stomach it, say no. I think the first formal portrait is best left to your immediate family in a way that feels safe and best to you. If your extended family brushes off your needs it is absolutely ok to say no. Don't feel bad.

5) Value your own emotions. Before you worry how your request or absence will affect others, take into account your own emotions. If it causes only mild discomfort or you think it might, it may be worth it to attend or go along with their desires (always keeping in mind a secret signal or allowing yourself to change your mind). If it causes extreme setbacks, as in after the event you might be back in bed trying to talk yourself into just getting dressed again, it is not worth it.

6) Realize that relationships change or past relationships that were healthy for you may no longer be. It is ok. You are not a bad person, they are not a bad person necessarily. They can be wonderful people in all other aspects but manage to crush what is left of you into dust with thoughtless words or deeds. The reverse can happen as well... relatives you were not close to may be the only ones who remember certain dates or who still remember your child in special ways. It is hard to know what to do and not everyone is capable of it. Just roll with it.

7) Recognize that the only person who had your special relationship with your child is you. You may think close relatives should understand your triggers or not push you to get over it, but they don't have the same ties. They may have their own triggers or honestly just not be as close to your child as you are. The biggest hurt comes from those we expect to give us the most support and do not.

8) Try to maintain what relationships you can in the ways that you can. Maybe you can' shop for a child because they should be the same age as your child, but perhaps you can give a gift certificate or allow your spouse to take over. Perhaps baby showers will hurt for a while, but you can still send a card with money or a gift.

9) Give yourself grace. You will mess up, perhaps make an ass out of yourself in the eyes of another person, it is ok. You might be angry for no reason. Accept that this is a crazy emotional experience and do not expect to grieve like the parents featured in the service at church last week. If you mess up, genuinely mess up (not just refusing to live up to expectations), say you are sorry when you are capable of it.

10) Learn how to deal with angry in a nondestructive way. We are often uncomfortable with our own anger. After losing a child you will go through angry spirals. And guess what- that is also ok if you learn to handle it without destroying your family. Can you jump on packing bubbles, buy plates from goodwill and throw them on the ground, kick a soccer ball, go into you car and scream with the windows up?

11) Be prepared for kickback from extended family or friends when you no longer behave as you used to. Ask yourself what role you have played in the past (were you the peace maker or expected to keep quiet when hurt/ not make waves? Were you the supporter in the relationship?). How have your survival needs changed this or may make it necessary to change? This is one area where you can grow in a positive way. Learning to stand up for yourself or learning not to stay in bad relationships is a good thing. You are not a bad person for making your needs known. It is uncomfortable at first and others will try to put you back into your old role.

12) Learn to ask for help from safe people. A safe person may not necessarily be close family or friends, it may be a counselor, psychologist, or another grieving person who has been there and done that (be aware that child loss can make people more compassionate or have the opposite effect). Choose someone who you can trust.

13) You may or may not need medications to help cope. Neither one is wrong if it is the right answer for you and the decision is made with consulting a mental health professional that is familiar with child loss. In other words, don't let someone minimize your grief by implying that you are doing it wrong and should obviously be on meds to meet their expectations, or let them tell you that you should toughen up and help yourself when you believe that they are helpful. You will get a negative opinion no matter what you do, the best option is the best one for you.

14) Practice self care. Eat high quality food, drink plenty of water, get enough sleep, get counseling or seek out group support if you need it, exercise, and guard yourself emotionally in areas you need to. Be aware of the brain fog and set reminders for routine Dr and Dentist visits. If you feel something is wrong physically, have it checked out- grieving is a huge stress on your body.

15) Watch out for signs of PTSD- there are treatments available to help.

16) Plan for the brain fog. Learn to set reminders on your phone or to use calculators to verify numbers at work. If you work with medications, make sure that you follow procedure and verify what you are giving, the patient, the route, and the dose with a coworker (it is advisable even without brain fog). Make lists and add to them as thoughts occur. Simple activities can be become difficult. Allow for extra time to complete tasks- in other words, your days of being able to procrastinate are probably over.

17) Pick up a hobby. Puzzles or a mindless repetitive task can help take your mind of things when you just need a short mental break. Other hobbies that require concentration, like archery, can serve the same function, just make sure that there is an extra factor of safety (rock climbing may not be the best option).

18) Beware of trying to self medicate. You are very susceptible to addiction using alcohol or drugs. Eventually we all face the grieving process even if we delay it a little. Be cautious about the friend who want to help take the edge off.

To me parents that have lost a child are emotional burn victims. At first nothing hurts (shock) and everything hurts. Give yourself grace and take care of yourself. With time joy will creep slowly back into your life as you emotionally get used to carrying the weight, but do not beat yourself up over unrealistic expectations. Sometimes it simply 'is what it is' and you need to survive before you can get to the point that you begin to regain your footing.

Monday, May 4, 2015

Why Expecting Twins Scares the Snot Out of Me

The first compassionate friends meeting we went to after we lost Perry, we simply weren't ready. It was less than a week after he died and we were too emotionally raw. Honestly everyone was nice, but when you are in that much pain there is not a lot anyone can do except cry with you.  It was so intense that I actually never went back, it became tied up in the early days of loss memories. Instead I actually went to a different chapter but in a city that was a similar distance from my house.

During that meeting, what stuck out to me were two similar losses. I listened most intently to them because in some ways they were similar to ours, parents simply waking up and one of their babies was gone. But they were also different in that they had surviving twins.

Later I learned that many twins are at increased risk of dying while sleeping simply because they were born earlier on average than singletons.

So when I found out I was expecting twins, I had two very different reactions to it. The first was an ironic amusement... I was so angry at having three full term pregnancies with only two children here to show for it, twins seemed like a surprise. Here I was, the poster child for early pregnancy loss, and the one time I wasn't expecting anything, it sort of hit... X2. So I certainly looked at it as a blessing, perhaps as God with a sense of humor. By most RE (reproductive endocrinologists) accounts my blood work basically shows that I should be infertile. Yet although I have had many miscarriages, I have somehow wound up with what is shaping up to be a 'larger family'. It is odd to say the least, and I feel ridiculously lucky at times (sometimes cursed for all the loss, but knowing that I do not deserve my kids). You see nobody really deserves their kids, and it makes me sad when I hear parents talk about their children like a burden or like they are doing something noble by parenting. And I know very well I have won the kiddo lottery.

The second feeling though is outright terror. Because while everyone loves to think of twins as this cute ultra lucky event, what they do not often think about are the increased risk of gestational diabetes, preE or Hellp syndrome. They do not think about the added risk to labor or about how they will likely be born early. Yes, hopefully not super early, but even 2 or 4 weeks can mean a huge difference in complications and potential outcomes with infants.

And there's that little (HUGE) sids statistic....

I watch so many twin Moms place their babies in situations where they sleep together, often with boppies or other unsafe objects, and they are so blissfully unaware. 'Don't you know your babies are already at a higher risk?' I want to shout. It seems to taunt fate. Sometimes there is simply nothing you can do, but placing babies together or in other unsafe situations starts to throw things towards preventable deaths. There are infants that have been found with fiber's of their twins pjs in their airway. What story will their Moms tell them when it comes time? Twins can bond awake... and you know what, they are two separate individuals, they will be ok if they spend 8 hours apart sleeping.

Perhaps when women lose a twin they drop off the boards or twin facebook pages, so most do not hear the stories.... But I remember two Moms with that instant bond of pain.

And it terrifies me.