Category Archives: FTSF

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!

Decisions not made

The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.
Had I been told while pregnant that Boo would be admitted to the NICU on her fourth day of life, that we would be told her brain was not developed and she would never walk, talk, jump, love or progress. That five years later she would still be proving to be a medical enigma, I may have made a difficult decision. I would have thought I was making the best choice for myself and my family.

I would have been wrong. So wrong. 

Doctors don’t know everything, testing is not always 100% accurate. The doctors for boo were well-intentioned, but they were wrong. Yes, Boo hasn’t had a tranquil childhood. I have had fears that she wouldn’t survive. Fears that she would never have a life like Abby’s. I worried, lost sleep, became a master at using Google to find remedies, treatments and novel ideas. I became a warrior mom, an activist an optimist.


I broke and continue to break.

Every time I break I think of that Fellow who didn’t believe in her. That did not understand the absolute power of a warrior parent. I remember that moment and am thankful for those broken moments as they make me appreciate how unbroken Boo really is. Being unbroken means there are a lot of decisions to make.

The decision to bring her home from the hospital and not let them define her.

The decision to send her to a daycare that loved her, that transitioned to a school that adores and supports her.


The decision to allow surgery (or not).

The decision to provide intensive therapies when we were told they were too much for her.


The decision to let Boo defy expectations, not once or twice.

There are a lot of decisions I make with Boo. Some large, some small, but all must be thought out, researched and agonized over. Yet there is one decision I never had to make and am so thankful the choice wasn’t offered.


I realize that best decision I ever made was one I didn’t have to make. 




Finish the Sentence Friday

I never understood

I never understood what the big deal was about milestones. Everyone has them, right? They are called milestones for a reason. Certain things are supposed to happen at a certain time. Abby? She was usually a week or month early on every milestone. Except talking. There she was slightly delayed. However when she began to talk, she talked in paragraphs. Even in her sleep. Sadly, I don’t remember any of them but when she walked, a week before her first birthday.


Boo’s milestones are completely different. I remember every one because they are different. I remember her first hospitalization. I remember the first time I had to make my own baby food because she was allergic to everything else. I remember her first steps on a walker.



I remember her first word, Abby. I remember every therapy appointment that gave Boo the tools she needed and the patience of her therapists. Then there are the crazier milestones. Take last couple of weeks. Boo had a lot of milestones this past month. 

For the first time I walked into a store with her. Usually she is carried or in a carriage. But I just had to run in for a gallon of milk. What could go wrong I wondered. Um….forgot about all the items at her height she could now knock off the shelves. For the first time we held hands, walked into a store and destroyed it. Plus we got the milk.

Boo went to the bathroom by herself.Well, she went into the bathroom and pulled down her pants. By the time I realized she was in there the poop was on the floor. However she went into the bathroom and pulled down her pants. And I cleaned the bathroom floor.

Boo fell in love with Frozen. She knows Elsa and can say her name. The entire house can recite verbatim every word in the movie.

Boo stole one of Abby’s stuffed rabbits. Renamed it Clover even though it bears no resemblance to the bunny in Sofia the First. Abby was okay with the renaming, not so much the stealing. Even though Abby hadn’t even remembered she had the rabbit. Score one for sibling rivalry milestone.

She said I ove you. Without prompting. I get to say it back.

I never understood what the big deal about milestones were, until Boo worked so hard to attain them.




Finish the Sentence Friday

In a blink of an eye

Just yesterday I gave birth. Just a night ago I rocked a baby to sleep. At midnight I dealt with my baby’s first fever. At breakfast I watched my baby take her first step. At lunch I heard her say her first sentence. At twilight I watched her ride a bike for the first time. At dinner we spoke about fractions. At bedtime she brushed her teeth without prompting.

That is how quickly a decade can go. In a blink of an eye I went from being worried about a pregnancy test to being worried about doing Every Day Math with my child.

My favorite decade was this one. The one when my little girl went from drooling, to teething, to eating to talking non-stop.

My favorite decade was this one. The one when my little girl learned to roll over, sit up, crawl, walk, run and swim.

My favorite decade was this one. The one when an imaginary little sister was replaced by the in real life one. 


My favorite decade was this one. The one that led me from reading bedtime stories to watching my child fall in love with the written word.

My favorite decade was this one. The one where princesses and fairies are slowly replaced by horses.

My favorite decade was this one. The one where Santa Claus, the Easter Bunny, Leprechauns, the Tooth Fairy and Tinkerbell existed.  

My favorite decade was this one. The one where Sesame Street was replaced by Word Girl that was eventually replaced by Shake it Up. (I kind of miss Sesame Street)


My favorite decade was this one. The one where the girl who would only wear dresses (that twirled) will now only wear leggings and T-shirts. 

My favorite decade was the one that went faster than my 8th grade history class. The decade that showed me what was important in life. The decade where I received not one but two beautiful children. The decade that hasn’t happened yet. The decades still to come where I will watch them grow and flourish and become the best that they can be.

Photo Credit: Family Tree Photography


My favorite decade was this one, what was yours?

Finish the Sentence Friday

Stop staring. I think to myself. Stop whispering. I think to myself. I know my child isn’t behaving. I know she is disturbing Mass. I know she just pushed your son. I’m sorry. I really am. But stop.

You don’t have to point. You don’t have to say that your children knew how to behave. That they sat quietly with a book. That they were polite and perfect. You don’t have to tell the waiter that dinner was lovely but you wish they would seat disruptive children in another part of the restaurant.

Trust me, I think that is a fabulous idea. Take the old smoking section of the restaurant, make that the adult only section. (Cause let’s face it the smoking section was always in the bar). Make a section where the families can sit. Where moms and dads can enjoy a meal they did not cook or do the dishes when the child didn’t even taste the meal. 

Where they would not feel judged. 

What I really want to scream out loud is WE ARE DOING THE BEST WE CAN.

It’s been a long decade, year, month, week, day, hour, minute. We are holding onto our sanity by a thin thread. You might believe that your child was a perfect angel. That they never raised their voice inappropriately. That they sat quietly in Mass. That they never pushed a friend or hit a sibling.  Your child would never have colored outside the lines (or on the wall).

The truth is, just like childbirth, you have forgotten what it was like to have a young child. That you were once like us. Parents burnt out by work, family and homework. You are looking back at the good times of being a parent. The time when you son got an “A+” or your daughter kicked the winning goal.

You are forgetting the pain of doing fractions. The fight to brush their teeth. That beds will be unmade. That there are temper tantrums (sometimes being performed by the parent). That we are all tired, hungry and just done. So we went to a “family-friendly” restaurant for respite.

And got spite instead. As you sat in the booth across the aisle and sipped your wine. I did feel bad when Boo screamed (with joy, mind you) so loud over the pop corn you were startled and spilled your wine. At least it was white and will not stain. When you cringed because Abby was speaking in her outdoor voice. That your experience was spoiled by Boo hitting Abby because she wanted to use the crayon Abby was currently holding.

I get it. You were just looking for a night out as well. You were not expecting to be seated across a family whose children were really excited about cheese & crackers for an appetizer. 

You could have ordered me a glass of wine, with a kind nod of a survivor who had been there, done that and survived. Instead you remarked, loud enough to be heard, that when your children were young they knew how to behave.

I really wanted to scream out loud, LIAR. Your children were probably spoiled brats or bullies or the neighborhood menace. But I didn’t. Instead I mentally thought how great it was that Boo enunciated pop corn for the first time. I blocked your stare of condemnation. I ordered my own (second) glass of wine and planned on tipping our waitress well, really well.  

I promised myself that in 20 years when my children are grown and I am seated across a mother trying to do her best I will order her a glass of wine in your honor.


Finish the Sentence Friday

Tell me, how would you finish the sentence, What I really want to scream out loud….

Never ending journey

It wasn’t what I expected. For some reason when I was little I thought all I have to do is survive until I am 18. Then life would be perfect. I would be all grown-up. I would answer only to myself. I would be respected. I would be content. I would stop searching. I would know that this is where and when I was supposed to be.


As a little girl I knew just how my life would be. I would graduate high school and viola be a grown up. I would have a great job (without any training mind you). I would have a home, a husband who doted on me and children who were well-behaved, respectful and put me on the throne I deserved to be placed upon.

I had no idea that the throne would end up needing to be cleaned so often. With bleach. But I am getting ahead of the story.

I turned 18 but had a few more months of high school. No moving out for me. I did not apply to college, who knew there were deadlines? Instead I ended up at a community college for about two months. I met a boy.

Boys. I tell you it all goes wrong with boys. I thought for sure this was my prince. And he was for a few years. One would think that moving in with a boy made you all grown up. But it doesn’t. 

The boy disappointed. I am sure the girl disappointed him as well. We failed one another and we moved on. I was sucking at this grown up thing.  The silver lining years later was knowing that while we failed we did not mess up one another. We didn’t make the mistake of getting married and having children with a partner who really never could be the partner we needed.

A few years go by. I get my act together with a real job and a semi-real apartment. (Man I miss that apartment). I met a man. A good man. A man with a house. A man with a job and savings and a budget. He was (I thought) grown up. We dated. We got a dog. We moved in together. I learned he wasn’t quite grown up, but neither was I.

We got married. Had a child. Built our dream home. Continued working at a job I enjoy. I went back to college and although that did not change my career. We had another child. The first child dog went to doggy heaven. A few years went by and we got another dog. 

Life continues. 

I hit the big 4-0 more than a few years ago. Certainly now I am a grown up, right? Except I am still not. I worry if people like me. If I am accepted. I still am looking for that magic wand that makes life a fairy tale. I worry that I am failing this life. That I am failing that man and the child and the dog. Yes, I worry that I am failing the freaking dog. I need reinforcement from friends and family that I am doing a good job. I worry that I am not career-orientated enough, that I will never succeed or move “up the ladder”. I lose sleep over knowing I am not the parent I am supposed to be. I try to give my best and wonder if I will ever be good enough. At anything.

The most unexpected part of being a grownup is that I never feel I am one.
 

Finish the Sentence Friday

My best dream ever….

When I was little I had a very active imagination. My parents would put me to bed and I would spend hours imagining a life other than the one I was currently living. Sometimes I was a princess, sometimes I was a warrior and sometimes I was just a girl living a different life.

Each night it was the same. I would wait until Mom put out the light and close the door and I would line up my stuffed animals all around me. I would begin to imagine this fabulous life where everyone was equal and no one was sad.

As a child I did not know that prejudice existed. That children were born with different needs and talents. That adults would look at a child and judge. The parent and the child would be judged and found lacking. That you would be judged for who you loved, your gender or your skin color.

As an adult I wore blinders. I saw those who were disabled but did not see past their disability. I saw children who appeared disobedient and thought not like mine. I admit to not seeing a person’s color but not standing up to those who did. I lived my life on my terms, never seeing how we are all intertwined.

Then I had Bridget and my ideals evolved. A person who was a wallflower became an advocate. It took Kristi’s Our Land to put my dreams in perspective. She dreamed of a world of empathy and wonder. One where we looked at others with the imagination of a child. Not with the jaundiced vision of adulthood. A land where it would matter that our children had a disability only to make people stop and see the wonder that is this life we live.

My best dream ever? It is a dream where Abby & Boo’s story show the world what wonder and empathy look like. A dream where we judge others like we did back in the sandbox. Not by color, race, creed or gender. But with the opening line:

Do you want to be my friend?

My best dream ever is the one where our children never lose their empathy. That they continue to look at the rain with wonder. That our children make friends first and judgments last. A world where we shared the joys, the heartache and the triumphs of living a life full of blessings.

The cool thing is? My dream is coming true. I was astounded this week when not once or twice I was stopped on the street and told that this blog affected them. In a positive way. When someone sees Boo and looks with kindness and not judgement. That some parent knows they are not alone.  A world when we are allowed to break and heal with someone there to help and not to judge. A life where others view Boo through Abby’s eyes. 

My best dream ever is the one that never ends. A life where Boo shows others how to live in a world of empathy and wonder. Thanks for being with me on my journey to make my dream come true.



Finish the Sentence Friday

Oh and if you haven’t checked out Kristi’s Our Land yet I recommend the trip. It’s not about living with a disabled child. It is about living your life to be better. There are posts about body image, friendships and not judging a person (or yourself) before you meet them. Kristi is the blogging equivalent of Oprah’s AHA moment. 

A funny thing

A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both.  However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on. 

There have been times when I have been in shorts.

When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk.  I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.

 
When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.

When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.

A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.

A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.

 

Finish the Sentence Friday