Why the Lincoln Classic is important

I’ve been thinking a lot about where I am in my grief, especially as September rolls around. September is Lincoln’s month for me. Lincoln would be two this year. Lincoln should be two this year.

I’ve been thinking about where I am in my grief because, well, that’s just the kind of person I am I guess. I tend to evaluate myself, my feelings, whether I’m doing better or worse than I expected. I’ve decided the pain hasn’t gotten better. It’s changed, and I’ve become better equipped at dealing with it and coping, but it’s still there. Pain that’ll take your breath away and bring you to your knees. Sometimes it will quite literally knock you down.

Harrison helps. He brings happiness and smiles, which are much needed. But that pain is still there. I used to come home (or to the hospital when that was “home”) and scoop up Lincoln. I’d give him a hug and get such a sense of peace. It didn’t matter what kind of day I had, everything was fine because I was snuggling my baby. Now I come home and scoop up Harrison. I give him a hug and no matter what kind of day I had, I feel better because I’m snuggling my baby. But I don’t get that same sense of peace. I miss that sense of peace. Not everything is fine. Someone is, and always will be, missing.

It’s always there. Sometimes in the back of my mind, sometimes in the front. But always there. Someone is missing. I’ll never have all of my children here with me.

I don’t get to post new photos of Lincoln growing up. I didn’t get to buy him a “Big Brother” outfit. I don’t get to see him teaching Harrison how to run around and get into trouble.

What I can do is celebrate Lincoln by getting together with people who love him at the Lincoln Classic. For one day I get to hear his name all day long. I get to talk about him without making people uncomfortable. I get to show the world that my baby was here, and he is important. All of this while raising money for the wonderful folks at Cincinnati Children’s who tried their hardest to save Lincoln. And that’s important.

Almost done casting!

We are almost done with casting! Harrison had his tenotomy (tendon lengthening) exactly three weeks ago. The doctor made a tiny incision in each heel so she could make little snips in his Achilles tendons, allowing her to stretch his feet from a pointed position to a straighter position. Then we had to leave the casts on for three weeks so the tendons could heal. They heal 80% in 3-6 weeks. Which I think is amazing. Kids are amazing.

Now three weeks is up, and the casts come off in the morning! We cannot wait! Tomorrow Harrison will get fitted for his brace, which looks like two shoes connected by a bar. Google says it will look something like this:

He’ll wear the brace 23 hours a day for the next three months. If all goes well and his feet do what they’re supposed to then he’ll move to wearing it only while he’s sleeping. He’ll keep doing that until he’s 4 or 5 years old.

The staff at Children’s tell us the brace will cause us more trouble than the casts because Harrison will be able to get it off. Apparently he'll learn how it works and may get a kick (haha, literally) out of trying to kick it off. I’ll take the tradeoff. I’m ready to give this baby a bath whenever I want, and take him in the pool! And take him outside without feeling bad about how hot it is. Our summer rule for having Harrison outside has been to imagine ourselves wearing a big, fluffy pair of sweatpants. If that sounds awful to us then Harrison’s probably pretty uncomfortable in two big plaster casts with cotton underneath and it’s time to get him back into air conditioning. I don't love the heat so I can't say we'd spend a ton of time sweating it out anyway, but even I've had enough of the indoors.

So excited for tomorrow!!

Casting, week 5

I promised to update on Harrison and I haven’t done a very good job so far. Sorry! So here’s the update…Harrison is doing great! He’s doing an amazing job growing, he’s over 11 pounds now. Great sleeper. I don’t want to jinx things but…he’s been sleeping 7-9 hours straight each night for about a week now. I love sleep! Fingers crossed we get more nights like this!

We are currently in week 5 of club foot casting. Here’s how it works…Each week, a few hours before Harrison’s appointment, John and I remove Harrison’s casts. The recommended method of removal is soaking the casts in a mixture of water and vinegar. The doctors do not recommend attempting to cut the casts off, as the plaster they use is very hard. Harder than the typical casts you see on a kid who has broken their arm. My explanation of how we remove the casts is in no way a recommendation to try it at home. That said, we have had great success so far being able to cut the casts off. John uses garden shears, blunt side only touching baby skin, makes tiny little tears all the way up the cast, then pulls the casts apart so they come off. That way we can keep each cast and see the progress each week, which is really cool!

After cast removal Harrison gets a bath. He loves bath time! We got his first smile on May 26^th (happy birthday, Aunt Maria!) when he was in the bath, it was really awesome.

Then it’s off to the orthopedic appointment for the next set of casts. The most stressful part of the day is timing it so Harrison is eating while his casts are being taken off (to keep him still) and then making sure he’s hungry at the time of his appointment (again, to keep him calm while they put the new casts on). Since Harrison usually nurses I always worry about getting bottles timed for this part, but it really hasn’t been a problem or even very stressful.

The casting does cause a little bit of swelling and light bruising, but it doesn’t hurt Harrison to get the casts on. The doctor only turns his foot as far as he’ll let her. But he sure does get a lot of sympathy and adoring looks from strangers when they see the casts, which I’m sure he’s eating up.

The casting is working.  They’ll cast to over correct the angle of his feet at his ankle, so his feet will point out in the casts. The idea is that if they over correct, when the casts come off his feet will end up at the correct spot. The doctor still can’t say how many more casts he’ll need, but she said it’s looking good. I’m guessing 6 more weeks, based on no experience whatsoever.

Right now both of Harrison’s feet are still pointed, but once foot/ankle angle are where the doctors wants them to be she’ll snip his Achilles tendon to make his feet point forward. This is done in the doctor’s office, not even a surgical center, and just takes a Band-Aid at the incision. Which is crazy to me, but great! After that he’ll get one more set of casts and these casts will stay on for 3 weeks to allow the tendon to heal. Then he’ll move on to just the brace.

Oh, and Harrison is getting very good at kicking with his casts on. Which is great! In other news, watch out for the baby kicking casts around. Ouch!

Also, Harrison is so cute! Right now he’s on his play mat, cooing and smiling away. So I’m going to go stare at him. Here he is! Growing out of clothes I insist on putting him in anyway!

One year

It’s been a year since Lincoln passed away. A little over a year now that I’m finally posting this. I started this post and thought about it a lot in the past month, but couldn’t seem to get myself to finish it. Maybe I didn’t want to acknowledge it’s been a whole year since we lost Lincoln. I don’t understand how it’s possible.

This year on Lincoln’s angelversary we hung out as a family. We went to Lincoln’s spot at Spring Grove, had coffee and donuts and told Harrison about his big brother. We didn’t get to stay as long as we would have liked because Harrison isn’t really into doing anything for a long period of time, but I’ve talked to Lincoln a lot about how little brothers sometimes need extra attention so I think it’s ok.

I had a lot of flashbacks in the days leading up to Lincoln’s angelversary. Especially on that day. What I was doing one year ago at every hour. It’s funny how so many details of that day are so clear, when the following days are such a blur.

A lot of loss parents say they feel a shift in their grief after a year. Not necessarily that it gets better, but that it changes. I can see that. We’ve been through each anniversary and holiday once without Lincoln so we know what to expect. It’s not that the pain is less, it’s that we can better anticipate and prepare for the pain. So that’s….good, I guess? Another common thread among loss parents is that the dread of a holiday or anniversary is worse than the day itself, which I’ve found to be true. Maybe knowing what to expect will help a little bit with that.

I’ve also been warned that others’ feelings about my grief will change. People in the loss community talk a lot about this. People won’t understand why I’m not “moving on” or “getting over it”. I can see that as well because my feelings about my grief have changed. I sometimes find myself being less kind to myself, thinking I should be doing better. Then I remember my baby died. I almost never say it like that. I say Lincoln passed away, or that we lost him. To say that he’s dead feels so harsh. But that’s what happened. He died. He’s been dead for a year. And sometimes I have to say it like that to myself to remind myself of the magnitude of what happened. I’ll never “move on” or “get over it”, and that’s ok. It’s ok to have a bad day. It’s ok to have a bad week. All I can expect of myself is to do the best I can.

I understand there are some people who will find my grief to be too much and that’s ok, too. They won’t understand why we talk about Lincoln to Harrison. They’ll disagree with mine and John’s decision to always include Lincoln in our answer to the question “How many kids do you have?” even if it makes people uncomfortable. They won’t understand why the Lincoln Classic is so important to us. And I’m coming to terms with that.

The wonderful thing is that after a year there are still people in our lives who are there for us. Even if they don’t understand, they’re there. And that’s what I want to focus on this year. The people who love Lincoln and love us. Those people are wonderful.

So, that’s that. It’s been a year. We love you, Lincoln. We miss you every day. Come visit any time you want.

Harrison is here!

Harrison is here! Obviously, based on the number of photos I’ve been posting to Facebook.

Harrison Lincoln Spurrier arrived on April 8^th, 2015 at 8:16am via scheduled c-section. He was 7 pounds, 12.5 oz and 20 inches long. Perfect little baby!

The c-section was relatively uneventful. The only glitch was that Harrison had been head down for weeks so I guess no one bothered to check him before starting the procedure. He had moved to transverse (sideways) so delivery took a bit longer and mom and baby ended up a little bruised, but all was well in the end. I felt better as soon as I heard him cry, and while I was being stitched up John held him so we could both talk to him and give him kisses.

Then he gave us a couple of scares…little stinker...

On our first night in the hospital someone decided they should check Harrison’s blood sugar. It was low, but went up after he ate. Then they checked it again at his next feeding and it was low, but got even lower after he ate. They moved him up to the Special Care Nursery, which is not quite the NICU but gives more attention. Cue emotional breakdown for me. I still wasn't allowed out of bed, so I had to hand off my baby to be taken somewhere I couldn't get to and I was not happy about it. However, once he was in the Special Care Nursery all of his tests were just fine. The pediatrician said another baby had weird glucose levels that night as well, so his assumption is that the testing machine on our floor was off (even though that’s the first thing I asked the nurse and she insisted that wasn't possible). So Harrison was back in my room a few hours later and I was happy. Actually, he was released at about 2am, right after John fell asleep in Harrison’s room and I had taken a couple of Percocets in my room. So after all my tears when he was taken away, I ended up asking them to keep him a couple extra hours until John woke up. Sometimes moms and dads just need to sleep!

About a week later we went into the pediatrician’s office because Harrison was squeaking a lot while eating. There’s no other way to describe the noise, he just squeaks sometimes. The doctor said he has laryngomalacia, which means he has come floppy tissue above his vocal cords. No big deal, he should grow out of it. However, when John put Harrison in his car seat Harrison had what they call an ALTE (Apparent Life Threatening Event). He had some reflux, milk came out his nose, and he choked and turned blue. The pediatrician turned him on his tummy and gave him a few pats and Harrison was just fine, but the event bought us a one night stay at Children’s for monitoring. Lovely.

Harrison was absolutely fine all night, and has been fine since. But I will say spending the night at Children’s was awful. We were kind of ok at first, we were too worried about Harrison to think of much else. Then they brought me my parent badge. Same photo my badge for Lincoln had, same lanyard, same everything. Which turned into a pretty big grief trigger for me. Then we moved into the room we stayed in overnight and it was just surreal. The room looked like all the other rooms…just like Lincoln’s rooms. I hated every minute of it. I hated the resident who asked how old our first son was, even though I KNOW he had been told Lincoln passed away IN THAT VERY SAME HOSPITAL less than a year ago. I know this because the other resident in the room stopped him and told me they had just been told. I hated him even more when he asked if I remembered Lincoln’s birth date, as if Lincoln’s passing could have potentially made me forget the date my child was born. Idiot. I wish punching people was socially acceptable.

But we were home the next day, and that’s what matters. And I’ve gotten side tracked…back to Harrison…

Harrison has since seen the cardiologist for an echocardiogram as a precaution. The cardiologist told us to go away and not come back. Those were his actual instructions. Yay! We haven’t done liver or kidney blood work yet, we’re going to wait another week or so, but there is no reason to think there are any issues there. Again, just a precaution.

We’ve also seen orthopedics for Harrison’s club feet. That doctor wants him to put on a little more weight before casting starts, so we’re set with a first casting date of May 4^th. She expects the casting along with a tendon cutting at the end of the casting process will be enough to correct the club foot. The casting will turn his feet forward instead of in, and the tendon cutting will then allow his feet to point straight ahead instead of down. We’ll have a better idea of long the casting will take once we’re a few weeks in. I’ll update and explain more once the process starts.

So that’s where we’re at. We’re enjoying snuggles with this little guy. It is wonderful having him here, and my fear that I wouldn't love him enough is gone. He’s brought baby happiness back to the house. He’s also made me miss Lincoln even more. I didn't think that was possible. But Harrison has reminded me of all we are missing with Lincoln. I know some people might think “but at least you have another baby to love”. Yea…call me selfish, but I’d prefer to have both my babies. That’s something I know I’ll have to work through and come to terms with. For now I’m just trying to be kind to myself and acknowledge that this isn't an easy process. But I couldn't be happier with our decision to have Harrison, and I love him so much. I’m going to go smooch him now!

A Harrison update

Quick Harrison update…I’m still pregnant. Ugh! I’m very ready to meet this little guy but he is taking his sweet time. Which is actually probably a good thing. The longer he waits the more my fears turn into just being ready for him to get here. But it’s been long enough and I’m ready now, any time little guy…

Since it’s looking unlikely Harrison’s going to make his arrival in the next 14 hours, John and I will be heading into the hospital tomorrow morning at 5:15am for our scheduled c-section, which will take place at 7:30am (assuming they’re running on time, ha!). If Harrison came on his own we would have tried to avoid the c-section this time but since I've had a previous c-section the doctors don’t want to try an induction and don’t want Harrison going too far past his due date. I’m not exactly thrilled about surgery, but whatever gets this little guy in my arms works just fine for me.

The doctors don’t expect any medical issues so this should be a routine birth. Harrison will be checked by a hospital pediatrician once he’s born, which is standard, and then he’ll go to dad while they’re finishing up with my c-section. Harrison’s pediatrician will also come to the hospital to check him out within a couple of days, which is very reassuring for me. He saw us through each step of Lincoln’s diagnosis so he knows exactly what to look for. He told us Harrison will probably have a few more blood draws than he’d like, but hopefully they all show that Harrison’s heart, liver and kidneys are perfect.

The only slight glitch is that they’ll also be taking a close look at Harrison’s feet. We found out he has two club feet. John and I didn't actually know what that meant before the diagnosis. It means his feet are turned in...sit with your legs straight in front of you and then picture the soles of your feet being turned so they would touch when you put your legs together and that gives you the idea. It shouldn't be a big deal at all and will hopefully be correctable with casting. Harrison will get casts on his legs and feet when he’s between 1-2 weeks old. The casts will be changed each week to slowly turn his feet to the correct position. The process will hopefully take only 8-12 weeks but will depend on how his feet react. After that he’ll wear a brace that looks like a snowboard, but that allows his feet to turn and move. The length of time he’s in the brace will also depend on how his feet react.

I’m not going to lie, John and I were sad and angry when we found out. Obviously club foot is nothing compared to the myriad of other problems Harrison could have. Trust me, we’re painfully aware of that. But we feel we put in our time at Cincinnati Children’s. We've paid our dues with doctor’s appointments. However, we also realize we asked Lincoln to pick out his little brother. And everything we've read about club foot tells us the success of treatment is highly dependent on parents sticking with it and being consistent. So the way we figure it happened is that Lincoln knew Harrison was worried about his feet and knew his parents wouldn't take breaks from treatment. So Lincoln sent Harrison our way, and we’re definitely ok with that.

The good news is that Harrison doesn't appear to have any other health problems. Club foot can be associated with neurological disorders and some pretty bad chromosomal abnormalities but it doesn't look like Harrison has any of those. And the doctors say they think Harrison’s club feet are malformations as opposed to deformations. This means the bones in his feet look properly formed, just turned incorrectly, which should make treatment easier.

So that’s what we have going on. Just waiting to meet our sweet little rainbow baby boy. Very impatiently waiting. I have big plans to give him more kisses than he knows what to do with. We can’t wait to introduce him to everyone tomorrow!! 

An update a long time coming

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!