Category Archives: FTSF

Express yourself

I used to be a wallflower.

No seriously, ask Tia.

I didn’t speak to my mother-in-law for 6 years, unless she looked directly at me. I didn’t know what to call her. I wasn’t sure how to get her attention. It took having Abby for me to say “Barbara” and even then I stuttered over it!

In high school, I would go a whole day without talking to anyone other than my closest friends. In Junior High, Mr. Leavitt got so angry at my mumbling that he screamed at me in my face. I fell under the desk. It was the 80’s teachers were allowed to scream at students and not get fired.

I was timid. I was shy. I had no self-confidence and rarely started a conversation.  Continue reading

Fear sucks…

One of the biggest fears I ever had to face, I didn’t know I possessed. When you have a child, you only imagine them healthy. You never imagine seeing them in the hospital, or working so hard to just say the word mom. You might, in the back of your mind, worry. You do not understand how true fear tastes.

The fears become accumulative.  Continue reading

Wanting normal

Although the pain fades, it never goes away.  I will never forget the fear I had, the moment I realized something was different with Bridget.  Having to take her to the ER on her fourth day of life and bargaining for her life.  I just wanted her to live.

Now “I just want her to be normal” Continue reading

Um….wow

To say February, March and April have been incredible would be like saying …. okay there is not one analogy I could make here that even comes close to the feeling I have in this moment. This is probably close to the expression I am wearing on a full-time basis.

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But….(because there is always a but) I am conflicted with feelings of jumping up and down with joy with simultaneous worry that I am bragging or being obnoxious. Add in feelings of oh not worthy, crap when is that other shoe not only going to drop but kick me in the head. I’m a bundle of emotions. Continue reading

It’s the cost

I hate tax season. When I start compiling all the documents, look at our W2 forms and realize where all our money has gone. A good amount to charity, not a great amount, but a nice amount. Money we worked hard for and in David’s case a lot of overtime. Money we are saving for retirement seems to dwindle each year. Vacations become more camping trips and economical. Holidays and birthdays become less extravagant and more meaningful.

CNN reports that the “average cost” of raising ONE child from birth to age 18 is a staggering $245,000. That is a quarter of a million dollars. This is the “average”, according to the report those in the Northeast can expect to spend an estimated $455,000. A half-million dollars and costs are rising. And that doesn’t include what your family may pay for auto insurance, driver’s ed, tutors or college costs (or the cost of your 25 year-old that continues to live with you).

Let that sink in for a moment. Continue reading

It’s the end of summer

At the end of each summer, I always feel YES! THEY ARE GOING BACK TO SCHOOL! There is usually a happy dance that quickly follows. Sometimes there is singing. This summer for some very weird reason is different. 

This summer was freaking fantastic. 


Sure there were some hiccups.There was the scare that Boo would have to have a second spinal surgery. There were meltdowns when she was on break from her program. This year there were more joys.

We had company just about every weekend. Seriously the sheets in my guest bedroom have never been washed so often.

When we were not company we were in Vermont. Twice. Once for a family reunion and once for the best ever family vacation where we were a normal family for a brief time.


I had a visit from my best friends from Junior High School and from High School. They got to meet. It was epic. As in spending the night until 2am drinking wine and connecting. And forgetting we are all over 40 and had to get up with our children in the morning. Early the next morning. I knew they would get along. I do not know how I go so long in between visits from both of them. We all agreed we have to be better about reaching out to one another. That although we know we are there for one another, we have to remember to reach out and be needed. 


I did not embarrass myself in any of the obstacle races I ran. Although I did end up in the ER for stitches after a dish-washing mishap. 

Boo rocked her MRI. She rocked it so well that we learned her spinal cord is perfect and she will not need to have a repeat surgery.

I did the ALS Challenge my way, explaining why I felt it was so important that the Challenge be more than just dumping ice on your head. My friend explained to me that it was supposed to be both: donate AND dump. When we looked back over our friends “challenges” though we realized how often the AND was left out. So I stand by my Challenge. Donate and dump ice. Please. Now. 

Abby had not one but three sleep overs. We all survived. My trick? Only one child can come over. That has been vetted with play dates to make sure they are not monsters that will destroy my house.

Boo’s summer program was the entire month of July and some of August. A blessing for all of us. I am deeply grateful for the teachers and specialists who gave up their summers so my girl will continue to thrive.

As I look over this summer I believe it is the first summer since I became a mom that I was present. That I didn’t use work to escape but to pay the bills. I was in the moment. Whether working with Boo to understand she could not have one more muffin or discussing if we would get a bunny. In a moment of weakness (or motherhood bliss) I said maybe. But it’s better than saying maybe you can get a pony.  


At the end of each summer I usually rejoice.

This year I mourn the end of summer. I want to be back there, in Vermont with my family. I want to be back there around the fire pit with friends. I want to be there on the beach watching Boo dance. I want that moment that she was whole. I want to wake up with no agenda other than to bask in the sun.


At the end of each summer I always feel exhausted. This summer I feel fulfilled. It’s a good feeling and one I will remember to recapture.


Finish the Sentence Friday

How would you finish the sentence: At the end of each summer I always feel….

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The most amazing thing my body has done is….

When you think about your body, I bet you see the flaws. Okay I see the flaws (of my body, not yours). I avoid the mirror after a shower better than a deer avoids hunting season. I would rather talk or write about anything other than my body.


So with the first Finish that Sentence in over a month I almost skipped. I truly could not think of one amazing thing my body has done. Let alone the most amazing thing my body has done. 

I know, you are thinking: CHILD BIRTH. But well, I didn’t do that too well. Pregnancy, sure. That was easy. Heck it wasn’t until month 7 with Abby that I even thought of maternity clothes (don’t hate me). Yet, I don’t really think that is the most amazing thing my body has done. Every mother, after all, has done it. 

So to be amazing, it has to be unique. Right? 

I was stumped. Truly stumped by this week’s prompt. What is the most amazing thing my body has done? 

Crickets.

How’s that for self-confidence? 

Then I realized it was simple, really. The most amazing thing my body has done is provide whatever Boo needs. I have held Boo down (physically) during a truly invasive, painful procedure yet she willingly runs into my arms. I have comforted Boo during moments of epic meltdowns and moments of a Hallmark-commercial sweetness.

This body is the one Boo clings to more than any other. This body, my body, is the one most likely to soothe, to make secure, to always be there when needed. At 3 in the morning or at 3 in the afternoon. 

It amazes me, with every test I have held her down through, she prefers my body over all others. 

My cheek is the one that rests against hers for a kiss.

My ear lobe is the one she rubs for sensory comfort.

My mouth the one that advocates for her. 

My shoulder is where she rests her head when tired, when sad, when happy and when content.

My lap is the most comfortable seat in any restaurant.



My hips are the one she rests her head against as I do dishes, just wanting to be close to my side. 

My legs are the ones carry her when she wants to walk but is too tired. 

My hand is the one that held as she slides down the ‘big’ slide. 

My arms are the ones that picks her up when she falls and lets her go when she flies.



The most amazing thing my body has done is something not for me, but for my beautiful Boo. 


Finish the Sentence Friday

I Run 4

I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.


I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public.  It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of tripping running in the woods.



Bailey& I running last fall. Or falling last fall.
Recently a friend asked me to join a group that runs for those who cannot. It is called I Run 4. This is a great non-profit that matches one runner for one buddy.The idea was sparked when the founder, Tim Boyle, began dedicating his daily run to a friend who was physically unable to run. They created such a bond a movement was born.

My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit.  She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.

Thus, a new village was created for my friend.  


Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners. 

If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information.  There is no cost to join, for the runner or the buddy.  

The runners are waiting to be a part of your village. Are you ready to be part of theirs?



The nicest thing some one ever did for me was to be my village and allow me to pay it forward.

And that is how I finished the sentence, the nicest thing some one ever did for me was….

Finish the Sentence Friday


**This post was not paid for/sponsored by IRUN4. I will not be moved up quicker on the buddy list (darn) unless more potential buddies decide to join the program. I did receive permission by IRUN4 to use their links and information to promote their program. 

Mom in the elevator

Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few years decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions. 

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

  • Your partner. You are in this together. Remember that and hold them to it.
  • Your best friend. They promised to be there forever. Hold them to it.
  • Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
  • Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
  • Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that. 

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me. 

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier. 

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.


PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!