All of us can describe a time in their life when the day started out great and then something unexpected happens. For most of us it is a blip, a traffic ticket, a cancelled date, rain on your wedding day or drawer full of knives when all you need is a spoon.

For others, it isn’t a blip but a tragedy. It is getting the phone call that while at little league your child took a fastball to the head, a call that your child fell down the stairs at a sleep over, you thought they had a UTI and nope it is sepsis, an autism diagnosis or a “yeah there is something genetically wrong with your child but we don’t know what that is (yet)” or I am sorry to tell you we think your child isn’t tired..they have cancer.

It doesn’t matter how small or large that tragedy is, it could only take your child a few days to recover, a few years until remission or it could be a life time.

But each unexpected phone call is life changing. As a parent you will never be the same again.

Recently a family in our town got that phone call. We have an incredible town, who immediately thought of ways to support the family. Their first thought was a GoFundMe, which was is a nice way for those that might not know the family but want to do something.

It has been a few years since Bridget has been hospitalized. However, if you are a friend of someone who got that life changing phone call let me tell you as a parent who has survived multiple unexpected hospital admissions what they really need.

In the era of Covid you cannot give them what they need most, someone to sit with them in the waiting room. Someone to stop by and allow them to leave to take a shower while you sit vigil over their child. Because although that child is being watched by the hospital staff, there is no way a parent feels easy going to the bathroom with out someone there that knows their child and loves their child the way other family members and friends do. However there are other ways you can give to your friend:

• Drive to the hospital and drop off a care package of fresh clothes, deodorant, toothpaste and tooth brush (the ones the hospital provides are awful!) and other toiletries. Don’t forget some favorite snacks, a notebook and pen and something personal from you (in my case an inappropriate card will do!).
  • Remember, they might be in the hospital for more than a day or two so fresh clothes run out. Offer to pick up their dirty laundry (sounds silly because laundry is the last thing on your mind, yet it is the thing you might need the most)
• If they are not staying in the dorms, but at Longwood (or other area hotel) instead of doing GoFundMe, pay for a night’s stay. If they are at Longwood, see what rotation they and their spouse are doing. Go up and just sit with them when they are “off duty” at the hospital. Don’t force them to talk. Just sit so they know they are not alone. Even if they are “resting”. It might be a 2 hour drive to sit for 20 minutes, but those 20 minutes will be cherished.
• Send DoorDash gift cards. These are a welcome relief from hospital food!
• Designate someone in your friend group as the point person. They are the one in contact with the family and can copy/paste/resend the information to your immediate friend group.
  • I’m not saying don’t send a text, but start with something along the lines of “I’m getting updates from X so don’t feel you have to respond. Just wanted you to know Z”
• If they are going back and forth to the hospital, offer to drive them. It sounds silly because I have made the trek alone so many times but there were times I honestly don’t know how I exactly made it home or there. Having someone drive them to the hospital (or later MD appointments) not only offers companionship but offers support the parent didn’t realize they needed.
• Mow their lawn, send a cleaning lady to their house, collect their mail, do their laundry. Make sure there are fresh sheets on their bed when they come home.
• Don’t forget the siblings! I’m not saying take them to Disney or do some large outing. But invite the siblings over for a sleepover, for dinner or a playdate. I some times wonder how Abbey survived with all the unexpected “hey we have to take Bridget to the ER but your Aunt will pick you up”. The family support is awesome and very important, but the siblings need their friends as much as their parents do.
  • Also allow the sibling to direct the dialogue about their sister/brother who unexpectedly went to the hospital and didn’t come home in a few hours. You are not there to be their therapist, but the adult that allows them to be the kid they are. Sometimes they need to watch a silly movie, sometimes they need to crawl into your lap or lay their head down. They will show you what they need, you just need to watch.
• Meal trains are awesome, but a tad overwhelming. So don’t do back-to-back, instead do every other day (because people always bring so much) and don’t stick with dinner. Drop off cereals, lunch items and snacks. Don’t forget the snacks!
  • If you are the friend that is spearheading the Meal train, offer suggestions. We had some lovely meals dropped off that we then regifted because it was food just not in our wheelhouse.

And the most important advice I can offer as a parent survivor is don’t forget the family. Not when they might still be in the hospital or rehab afterwards, but also when they come home. Right now their life is in flux, but they are being cared for by the best of the best at the hospital. Then you get discharged and think holy crap, what do I do now? Unless you have been there, you have no idea how the thought of going home becomes a real fear.

That freaking phone call is just the start of a life unexpected. So do the unexpected and be there during the crisis and then when the family is dealing with the fallout.

I am sure others who have been there might have more to add or disagree with what I have learned what works or might have worked for our family. Every one deals with fallout of that phone call differently

Yet at the same time, we all need the same thing: the support of our friends and family.

This is when the village is created. Make sure you fill out your membership card and renew it often.

I have never had an issue with age. When the girls went to pre-K, I did not cry, they were supposed to go to pre-K. The same is true for kindergarten, middle school and high school. I do not look at Abbey and think, oh she is getting so old I want her to be young again. When it was time to go for her license I did not think: I want my baby back. I thought thank goodness she can drive herself to work.

Bridget’s milestones are different, but I have never wished for my baby to stay my baby. Maybe because I’ve always known she is my forever child. I think it is more, I expect both my children to grow, to gain independence and to become more than I ever dreamed.

Then I turned 50. Suddenly this shit got real.

Continue reading →

If we were sharing a glass of wine, I would lift a glass in toast to you:

The Educational Support Person who may or may not have a background in special education but is learning not only how to teach online, but teaching a child whose biggest accomplishment in your session is that they did not turn off the computer on you.  This teaching is brand new to both you and the child, yet you persevere. Continue reading →

There is Play-doh in my house.

For those that know me, you know that this is a very big deal in my home. I banned Play-do to be used only in the unfinished basement back in 2006 when my then 3-year old not only imbedded it into my kitchen table but my semi-new kitchen floors. Continue reading →

I reached out to Bridget’s special educator explaining the barriers we were having at home teaching Bridget. How we have to model everything, hand over hand, we have to point to the words in reading and do all of the scribing for the written work. On the computer for math we have to read each question and then help her find the answer. Within moments she called me, of course you have to do all this! She is a 1:1 for academics.

It was a shock.

Not that she is a 1:1, I have her IEP practically memorized. Continue reading →