It’s been awhile since I’ve posted. I’ve thought a lot about
things I’d like to write, but have had a hard time figuring out how to start. It’s
been so long since I’ve given an update that I don’t know how to do it now
without getting long winded! So I’m going to start by going through the most
common questions people ask John and I these days and I’ll try to keep it
somewhat brief.
1) Any updates on Lincoln’s genetic testing?
Nope. The outstanding genetic tests compare
mine, John’s and Lincoln’s DNA to see if there are any abnormalities that might
have caused his health problems. This test got started in September, will take
1-3 years, and the doctors don’t really expect to find anything. So we’re not
holding our breath.
2)
Have you had genetic testing done for baby boy
#2 (Harrison)?
We’ve had some basic genetic screening
done, but since the doctors don’t know what caused Lincoln’s health problems there
is nothing to test his brother for.
3)
So do you know if baby Harrison will have any of
the same problems Lincoln had?
No idea. We hope not. The doctors think it’s
very unlikely. But we’ll have to wait and see.
4)
Are you nervous about it?
Well, that’s a stupid question. Of course
we’re nervous. But our desire to grow our family outweighs our fear. Our only options
were 1) wait 1-3 years for a genetic test to probably tell us nothing 2) not
have any more children or 3) focus on hope. We’re going with #3.
5)
How’s Harrison’s nursery coming along?
This question is tough because people want
expectant parents to answer with optimism and excitement when talking about
nursery setup. But the honest answer is that the nursery set up was an
emotionally charged and often very painful process. John and I would love to have
been able to set up Harrison’s nursery with the same level of excitement we had
when setting up Lincoln’s nursery. But we’re not those same people any more. It’s
not that we’re not excited for Harrison, that couldn’t be further from the
truth. But it was heartbreaking to take Lincoln’s things out of storage and be
reminded of how much he never got to use and how much we missed out on. It was
not fun.
But the nursery is set up now, and we think
it looks awesome! It has the same nautical theme we chose for Lincoln. We
considered changing it, but in the end decided having an angel for a big
brother does not mean Harrison gets all new things. Sorry baby, hand me downs
are part of having an older sibling! We did change the layout and do some
painting, so the room looks quite a bit different. There is a lot of Lincoln
included, but a lot of changes just for Harrison. We think it’s a nice mix.
I also got advice from a fellow loss mom
who found incorporating the new baby’s name into the nursery décor was helpful
in differentiating the room in her mind. So we’ve put Harrison’s name on the
wall and added a couple other items with his name on them. We expect bringing a
baby home to that room will bring back a lot of memories and be a difficult
experience, so hopefully that helps. I know it’s already helped me associate the
room with Harrison instead of only Lincoln. And that’s what Harrison deserves…a
room filled with love for him and not just sad memories for his parents.
6)
Any question about “feeling better” or things
being better when Harrison gets here.
Another tough question. I think people want
us to feel “better”. Things that cannot be fixed make people uncomfortable. But
losing Lincoln and meeting Harrison are two completely separate things. I think
Harrison’s arrival will bring joy to our lives, but not lessen the pain of loss.
A friend said it perfectly once that “Harrison is Lincoln’s little brother, not
his replacement”.
Harrison is our rainbow baby. This is the
best explanation I’ve seen of that term:
"Rainbow
Babies" is the understanding that the beauty of a rainbow does not negate
the ravages of the storm. When a rainbow appears, it doesn't mean the storm never
happened or that the family is not still dealing with its aftermath. What it
means is that something beautiful and full of light has appeared in the midst
of the darkness and clouds. Storm clouds may still hover but the rainbow
provides a counterbalance of color, energy and hope.
For me, that fits how I feel perfectly.
7)
How are plans for the Lincoln Classic coming?
Things are starting to get under way! Our
most exciting update is that last month we finalized where our donation money
was going. Giving the donation to the liver team was great, but we wanted to
know specifically where the money would go and provide final approval. I was a
bit of a control freak about it. It was very important that the money be put
toward something that would really help the team learn more and provide better
outcomes for liver kids.
Knowing this, the liver transplant team asked
that the funds be allocated to pay for part of the salary of a Liver Transplant
Clinical Research Coordinator (CRC). After hearing what this person would do,
we agreed it would be a great use of our Lincoln Classic funds. Here’s a
description of the position:
· The support of a liver transplant clinical research coordinator
increases the efficiency and productivity of clinical research studies,
enabling the research team to do more studies each year.
· The CRC takes care of the "day to day" details of a
clinical research study, freeing up the Hepatologist's time for other pursuits.
You know, for things like saving babies and dreaming up ways to advance
medicine :)
We’re really excited to be able to help the
team in such a tangible way! More research means better medicine and more lives
saved.
Our next line of business is to officially
set up as a non-profit organization so we can provide receipts and allow
everyone’s donations to be tax deductible. Then we’ll figure out how to let
people donate online.
8)
Finally…How are you doing?
Depends on the day. We’re working through
how to cope with our loss and still function day to day. Sometimes we’re
successful, sometimes less so.
I can’t speak for John on this because I
know he processes his grief differently. But for me, most of my energy goes into
getting through the work day with some level of normalcy. Grief counselors say
to remember that grief is constantly changing and is not only emotionally
exhausting, but physically exhausting. So on those days when I just don’t feel
I can put on a happy face and socialize, I avoid it. Some days I have a hard
time being around kids, and other days I’m fine around kids. I do better with
both social outings and being around kids with advance notice, it allows me to
mentally prepare. Some days I can look at pictures and videos of Lincoln and
smile, and some days I can hardly stand it. Some days I can visit his spot at
the cemetery and chat with him about how being an angel doesn’t mean he doesn’t
have to share his toys and eat his vegetables, and some days I visit and all I
can do is lie on the ground and cry.
I haven’t been able to be a very good
friend to others and just hope my friends are still there in the future. Because
there is nothing else I can do. There will always be a broken part of me and I’m
still trying to learn how to cope with it. My baby was here, I could hold him
and give him kisses. Now he is gone and I want him back. I expect I’ll always
struggle with it.
So that’s my update. Sorry it got long! I’ll
try to do better about updating more frequently so my posts don’t get
ridiculously long like this. The next one will be about Harrison and how he’s
doing so far (spoiler alert, he’s doing great!). If you’ve made it this far,
thank you for listening!
