There are a few times of the year that prove to be particularly challenging, year after year. Homecoming is one of those times. The other times are prom, high school graduation and college acceptance season. I try to avoid social media during those times.
Anyway, this weekend is Homecoming. Cooper is a senior and Harlie is a Junior/Senior - it is her 5th year in high school. She can go to high school until she is 22 and she will turn 20 next Friday, September 25th.
A couple of years ago, Tom and I had a really rough time during the Homecoming parade (which is a cute thing they do on the Friday before the dance). Tom volunteered his pick up truck for the theater float. The show that year was The Little Mermaid and Cooper played King Triton. Anyway, since we were there early for decoration, we got to spend time with the kids and we truly got a kick out of their energy, playfulness, teamwork and creativity.
It was impossible to ignore that it is so different for Harlie. She is not a part of any of that. She does not have any friends. She has no team to work with. She has no float to decorate. We both couldn't help but wonder what could have been - what should have been. And there are no words to adequately describe our heartbreak.
Last year, as juniors, Cooper and his girlfriend were voted on to (?) the Homecoming Court. Harlie came home from school that Friday upset. Harlie rarely cries - and usually it is surgically related. She is one tough cookie and I have no idea how she handles her complicated feelings. However, that Friday she was feeling so sad and she came home in tears. I think she could see that Cooper - along with a school full of kids - are living a life she does not get to experience. She asked me how Cooper has so many friends. She also said that she wants to be seen. I've been with her in crowds, and people either stare or they act like she doesn't exist. So, I think I know what she means.
That night Cooper and his girlfriend were in the parade for Homecoming Court. While Tom and I are so happy that he is living his best life - we are also so heartbroken that Harlie's life is so incredibly difficult. Feeling both extremes at the same time feels like torture. The sadness feels like a heavy blanket that just doesn't allow happiness to shine through. But, we can't show that. We have to hide that and be happy for Cooper and smile along with everyone else. Wrestling these feelings and hiding them - is totally exhausting.
Also, to make things worse - finding clothes for Harlie (that are flattering) is a true challenge. She weighs 75 pounds, is 4/4" tall and wears size 10/12, so that is the little girl section of a store. Some clothes/styles accentuate her g-tube (which is a no go) and some accentuate her trach, her trach scars, the veins near her neck, etc. Plus, her shoulders are tiny, but due to all of her chest surgeries, her chest is wide. This makes dress shopping downright painful. When I have found some that work - I buy them and just keep them in her closet. Last year I got one with tulle on the bottom so I could cut it (to make it shorter) without anyone being able to tell what a horrible job I did. Thank God she doesn't care if she's already worn the dress before. There are a few she has worn multiple times. When you stay in school till your 22 - there are a lot of dances, picture days, etc. Wearing something just once isn't an option for her. Shoes are another issue. Dress shoes are out of the question. Luckily, the trend right now is sneakers with dresses - so I'm thankful for that.
Needless to say, I've been dreading this weekend. Cooper came home the other day and told us that him and his girlfriend were voted on to Homecoming Court - again. I believe they announce the court during a pep rally at school today. I really didn't want Harlie to be surprised at school (like she was last year). So, I was thinking we needed to tell her.
It is Friday morning and Harlie came downstairs and told us that her birthday is next Friday (as if we needed reminding, haha). Then she started to cry. I suspected this might happen because she has said something the last few years about her running out of her teen years. She said it in a way that indicated she was feeling sad about getting older. I'm sure it feels weird to her. She is smart enough to see that she still likes kid stuff (kid cartoons, movies shows, etc.) but the kids around her like things she doesn't understand. She's also kid sized. So, I'm sure all that is a bit confusing for her. So, I asked her if it is because she is turning 20 and she said yes. She told us she is worried about her future. Ugh. Break our hearts. Heck, we are worried about her future, too.
Then she told us that she can't find a boy that she likes/likes her back. Then she told us that she asked a boy in one of her gen ed classes if he would like to hang out with her at the dance - to get to know each other better.
What the hell???? This girl is literally the bravest person I know.
But she said he told her he has a girlfriend.
It is so hard to put my feelings into words. Look, I know the reality. I know what she looks like. I can guess what other kids think about her. Especially boys. I know how kids can be. Based on my social media viewpoint, it appears that parents are most proud about athletic achievements and academic achievements. I wish befriending someone who is different and could use the help was important, too. Heck, I tried to hire companions to hang out with Harlie - none of them stuck around. Also, I don't mean to be insulting here. It is just the reality.
Anyway, this morning was unusually rough. Since she was already feeling crummy, I thought we should tell her about Cooper and homecoming court before she found out at school. These are complicated feelings for her. Honestly, they cause complicated feelings for Cooper, too. None of this is fair to any of us. We all hurt and it sucks so bad. I asked her if she wanted to stay home today, but she said no. I told her it is okay to take a mental health day. I did so just last Friday! I was totally going to go to work, but the day ended up being a rough day, so I didn't go. Anyway, I told her to text me if she wanted me to come get her.
It is so hard to see your kid suffering and not be able to fix things for her. All we can do is bear witness to her suffering, sit beside her and love her as hard as we can.
I guess the other thing I do is share. I share to help me process my grief, trauma and anger. But, I also share to educate. Maybe learning about the things that are difficult might make you kinder to the next person. Maybe that's a child, maybe that's a parent. Even better if it makes you nicer to me - haha! I don't know. I just know that this life as a mom of a child who is medically fragile is lonely and hard as fuck. The hard times just never stop. There are certainly times of joy sprinkled in - but they are grossly overshadowed, if I'm being honest.
Since I'm sharing... on Wednesday I had a particularly rough day of appointments for Harlie. She had an appointment with a pulmonologist in the Advanced Lung Disease department at Children's National in DC. I mean, really. Who wants to take their kid there?!?! Well, I guess if your kid has advanced lung disease then that's the place you want to go - but ugh! Then we had to get back in the car and drive 25 minutes further north to see an Immunologist (also at Children's National - but at a satellite location). During Harlie's inpatient stay after her last heart surgery, they called immunology in to see her. I might have blogged that I had to go through her ENTIRE infection history (which is a ridiculous amount of information). They took a bunch of blood labs and they took a stool sample. So, this appointment was to go over all of those results.
He told me she has Protein Losing Enteropathy (PLE). I'll spare you all the details, but basically, because of her high venous pressures due to her heart circulation, stuff isn't absorbed into her tissues the way it is supposed to - so it gets put into her GI tract and her body flushes it out. Anyway, I love Googling one of Harlie's diagnoses and reading that it is "a serious and potentially fatal complication". Just add it to the list.
- High Venous Pressure: The Fontan procedure lacks a right ventricle, causing chronically elevated central venous pressure that transmits back into the liver and gut capillaries. [1, 2, 3]
- Edema: Swelling in the legs, face, or general body tissues due to low blood oncotic pressure.
- Fluid Buildup: Ascites (abdominal swelling) and pleural or pericardial effusions around the lungs and heart.
- Gastrointestinal Issues: Chronic or intermittent diarrhea, fatty stools, and abdominal bloating or pain.
- Testing: Diagnosed via blood tests showing low albumin/immunoglobulins and confirmed by elevated stool alpha-1 antitrypsin levels, MRI, or dynamic contrast MR lymphangiography. [1, 2, 3]
- Medical Therapy: High-protein diets, diuretics, pulmonary vasodilators (like sildenafil), anti-inflammatory steroids (like budesonide), and heparin. [1, 2]
One of the more interesting things he told me is that her number of experienced antibodies is really low. Like if you had a cold, or a certain flu strain, covid, etc., your antibodies have seen it and have learned how to kill it. So, that number being high is good. But, Harlie's is really low. After seeing all her results (and there were a lot) I am shocked she doesn't get sick more often.
Regardless, there is nothing we can do about it now. The action items he gave me are:
1. Repeat the labs and see if they are better now that she has fully recovered from heart surgery.
2. Repeat labs, then give her boosters of all the vaccines and then do labs again to see what happens. But, ultimately, we know they will only stay in her body for a short time because she is losing it through her GI tract. Plus, this means A LOT of sticks and pokes and I just don't see enough benefit to outweigh that agony.
3. Have her get antibody infusions. Again, they only last a short time and this involves more sticks and pokes.
4. Do nothing.
Since her biggest problem seems to be post-op infections vs. colds, sinus infections, pneumonia, etc., I asked him if it would be helpful to her if she received an antibody infusion prior to a scheduled surgery. He said yes. OMG. Where the hell was this information 10 years ago?!?!!
So, if she is scheduled for a surgery or if she starts to get sick more often, I will get back in touch with him and do the infusion thing. But, for now, we aren't going to do anything.
Well, I'm going to wrap this one up. Sorry it is pretty heavy. Sometimes that's just the way it is. Oh, if you ever have a loved one that is going through something really difficult, sometimes the only thing you can do is bear witness to their suffering, sit beside them and love them. So, thank you for reading. Thank you for caring. It really does mean so much to me.
Much love,
Christy
