Learning to Let Go

Giving up control is something that I have always struggled with and that may be why God gave me 4 very independent girls: to teach me a lesson:)  There is the obvious… letting them bring an art project to school that actually looks like they made it, because they did, letting them take control of the steering wheel (currently teaching daughter #2 to drive!) or letting them burn a frying pan making grilled cheese for the first time.  But, for a mom who has spent the last 6 years fighting for support for her “special needs” daughter, it is really tough to give up what I was so certain she needed.

Maria has a personal aide in school and 4 therapists.  She also takes a typical dance class that has 6 students and an aide, Miss Jen.  Miss Jen is for the class, but because Maria had trouble focusing for the entire class and because I was so nervous to allow her to disrupt the class and possibly not be welcome back, the aide has become more of a personal aide to Maria.  To keep her in line she holds her hand through much of the class.  Even with this Maria was flopping to the ground and refusing to do most of the class.  We went from “her legs are too tired half way through” to “she just doesn’t want to be here” to ” maybe it’s too difficult and she is frustrated or embarrassed.”  Well, I was wrong all 3 times, almost.

Last week the aide was absent and the teacher said that Maria did about half the class herself and then sat and refused to get up (a routine she has set for herself there).  But, the teacher was surprised at how well she did the first half and actually commented as to how well she was doing without Jen.  As Murphy’s law would have it (or so i thought), that’s when maria did her ‘drop and flop.”  This afternoon, the teacher held a make-up class for missed days and again Miss Jen was absent.  Neither the teacher nor I mentioned Jen at all and Maria danced the entire 45 minutes, doing all the correct moves!

The teacher and I have been racking our brains trying to figure out different ways the aide can help Maria fully participate not realizing that Maria WAS embarrassed (that’s why I was only ‘almost’ wrong🙂.  but,not because she was struggling, but because SHE had an aide and didn’t need one.  She was even embarrassed when the teacher pointed out how well she was doing without Miss Jen.  I spend so many hours trying to figure out ways to help Maria that i sometimes forget she is growing up all on her own and can help herself.  She so desperately just wants to be like everyone else and because she can’t express those feelings with words yet, she chooses, what I call “bad behavior”, to say “I AM like everyone else Mom, teacher, whoever.. just leave me alone.”

Watch out world.. she may be 40″ but she is a 6 year old on a mission!!

Life updates!

Life is just so busy.  We go and go and go and we forget to take time to stop and document/remember/share our lives.  Our lives are meant for work but they are also meant for sharing and cherishing.  A life that does not effect others is not a life worth living.  I forget that and I forget to blog :)  It’s been a while….

So, Christina is married and expecting her first child!!!  Ha!  It hasn’t been that long!  Seriously, Christina is chugging along in her first year of college.  Although she chose to stay home for college and save herself debt, we hardly ever see her and the house has just become a travelers lodge for her to stop and freshen up.  She has her third interview for a job on Friday which will land her in a dorm for the summer.  Little does she know, dorm life is not all it’s cracked up to be.  But, I pray that she gets it for the experience!

Julia, who does not want us to know anything about her life and has shown almost no interest in any college flyer that comes in the mail, was caught making a thorough list of schools, comparing and contrasting cost, clubs, majors etc.  She is a secret planner, as evidenced by her emergency toiletry kit hidden in her room.  I would love to have one day in her head, but just one.. anymore than that would scare me:)  Remember her name.  One day, when we are least expecting it, she will take over the world.

Anna is Anna.  She’s a unique 12 year old.  That is actually saying a lot.  Most 12 year olds are just carbon copies of each other.  She walks to the beat of her own drum and I have found her rhythm so entertaining this year!  She is becoming a young woman who does not care at all what others think and is finding her own passions beyond just soccer.  She is wise beyond her years and when I find her watching shows, like Breaking Bad, I have remind myself that she is 12 and needs to shut it off.  But, she loves stories, historical stories,especially ones about the Holocaust, and hates discrimination of any kind.  Following in her mother’s footsteps, I read her Social Studies project entitled “The 10 things I would do if I were President.”  Number 8 was my favorite. “I would have a Special Education teacher in every school.”  When i asked her why, it was simply so that everyone could learn together in the same school.  Wonder where she got that from?

…Which takes us to Maria.  While First Grade in a mainstream school is not going perfectly, it is so much better than I predicted :)  It took her a good month to settle into the routine and learn the behavior expectations of the teacher.  Since that time, it has been great.  She has a wonderful teacher that works with me at modifying her curriculum and finding  the balance between challenging her and not stressing her out.  Maris works her butt off everyday.  She is passed out every night by 7:30 trying to absorb what she was exposed to that day.  She is reading!  It is slow but steady progress and last year at this time I would not have expected her to come this far.  Her math is severely behind, but that is okay.  It always will be. I haven’t given up on it, but have accepted that reality.  She is working on simple addition and subtraction (no Common Core crap!) and since we need to be practical, she is learning money with her special ed teacher. Most importantly,  she is accepted in her community.  There are times she is given a pass another child wouldn’t get and I have to remind the staff to treat her like everybody else.  But, sometimes, when I see her exhaustion at 7:30 I let her get a pass too.  She fights so hard to be like the other kids and has to fight herself so often too.  She knows what is socially acceptable and what is expected of her, but often her brain tells her to act impulsively still.  Watching her try to stop herself and “be good”  makes me happy that she is maturing and smart enough to know what is ‘right”, but sometimes still aches my heart that she has to try so hard at EVERYTHING.  But, my heart breaks for all my kids at one point or another almost every week!

Ed and I are chugging along too.  He’s working his butt off ( he seriously may have froze it off this winter!).  I’m still singing! I am also on the board, with a group of awesome ladies, of a nonprofit that helps children who receive special ed services in the Catholic schools here. It has been so rewarding to see all the hard work of our group actually help parents get the education they dreamed of, but did not think possible for their child.  God is leading my whole family  in wonderful directions everyday.  I have chosen to keep my eyes open, as to not miss any opportunities or callings.  I want to make sure I am living the life God has chosen for me to cherish and share.  Thanks for making it this far in reading a boring “family update” letter.  Please don’t forget to share your life.


Once upon a time there was a mom who brought her son and her son’s friend to McDonald’s Playplace for some lunch and some time for the boys to release their energy.  About halfway through eating a young teenager and a little girl walk in who clearly had “something wrong with her.”  The little girl was running around like a maniac, taking off her socks on the “socks required” playplace and was even blocking the crawl tunnels, not letting the woman’s boys run through.  The mother was super annoyed and informed the teenager, who was repeatedly putting the socks back on the child, that the act of the child taking her socks off was “DisGUSting.”  Lots of snotty looks accompanied her comments.  As the teenager tried to take the little girl out of the crawl tubes the mom had some more comments and more looks.  

I walked in about 20 minutes later (because apparently it takes 20 minutes to get french fries and a chocolate chip frappe)  The little girl was Maria and the teen was Julia.  Clearly, the mom had thought that Julia was another negligent teenage mom and had a look of shock when I sat down with Julia and disciplined Maria for taking her socks off.  I did not know the previous encounters had occurred and I tried to make small talk with the woman because I recognized one of the boys she had with her.  At the time I thought she was just weirdly anti-social, but now I realize she was probably feeling awkward about the whole situation.  She gathered the boys and left.  Obviously, as soon as she walked out Julia told me about their encounter and I was furious!!!  Even if Jules was a teenage mom, who was this woman to treat her like that?  A teen mom to a special needs kid?  Perhaps she should be offering help!  I come back to this a lot… but why are mothers so judgmental of each other?

The woman had no idea of what our last few days have been like, nor should she.  We all have a story.  She didn’t know that maria had an eeg and sleep study on Sunday night which puts her in a anxiety ridden PTSD for days, sometimes weeks after.  (I am not exaggerating.. she actually has PTSD from all the EEgs).  I have been listening to her whine and cry for 72 hours.  When she is not whining she is acting out the procedure with her babies and fake crying.  SHe looks like she has a rash all over, because she has broken blood vessels on her face. neck and chest from screaming so much during the hook-up.  I am exhausted, waking for hours in the middle of the night last night worried about the results and I had just come from a funeral where I tried not to cry so that I didn’t ruin the music for this man’s celebration.  At McDonald’s I was relieved that maria was not whining, so I honestly didn’t care that she was taking her socks off… but i disciplined her for fear of public judgement, I guess.  When we got home she whined some more and then proceeded to urinate all over the kitchen floor, which is very unlike her.  So mom at Mcdonald’s.. how about we stop judging people.  In fairness, I do not know her story, but no one’s story allows them to treat others like crap.

At the funeral today I was reminded of Jesus’s last words.. “It is Finished.”  Jesus was referring to the fact that the prophecies and his journey had been fulfilled on Earth and then he breathed his last human breath.  Like Jesus, we all have a journey which we must go through with varying joys and hardships before we can say “It is Finished.”  I just wish we could all respect each others’  journeys and maybe even help each other out as we go along, not make then harder.

Let’s be real.. because I am fat you were judging me a little for getting fries and a chocolate chip frappe.  Well, they were for Maria and Julia.  So, stop judging.

Now, let’s be even more real… I ate some of their fries and am eating french vanilla ice cream as we speak🙂




Today is a day of Victory! Today was the last straw, the straw that broke West Syndrome’s back. Maria has officially crushed WS by drinking from a straw!!!

This may sound ridiculous to some, but we have been trying to get Maria to drink from a straw, on and off, for 5 years now. Her destiny, as told to us at 7 months, was that she would most likely not be able to walk, talk or eat. (West Syndrome has a way of destroying nerves, especially in the mouth) She proved them wrong in all three areas, slowly, but surely. She chewed for the first time 20 months ago and on that day I cried like a blubbering baby. She graduated to sippy cup from bottle about 18 months ago and I cried,again. Maria learned to drink small amounts of liquid from a regular cup (“open cup” in therapy language)as well. But, the skill of drinking from a straw has been hanging over our heads for a long time and today I cried, again🙂

Why was drinking from a straw so important? Well, first there are the motor planning and muscle strengthening benefits. Her articulation in her vocal language still has a long way to go and exercising the muscles through straw drinking is extremely helpful. There is the convenience factor. I hate having to remember to bring an empty sippy cup with us everywhere we go. But, most importantly, to Maria, is the social factor. When she begins first grade, no longer will kids look at the baby in the class with her sippy cup. She can whip out her juice box (or coconut milk box🙂 like everyone else and not feel different. As delayed as her oral motor function is, socially she is extremely aware of everything. She knows exactly who likes her, who doesn’t, who thinks she is a baby, and who respects her as a peer. Drinking from a straw to her is as big as being toilet trained is to a typical child.

All children grow in spurts. They have a physical spurts, mental spurts, etc. Most of the time these happen so rapidly that in a typical child it is hard to see one specific gain as it overlaps with so many other gains. In children with Down Syndrome, the body can often only handle things one at a time. So, progress is very noticeable in specific areas. For example, I was getting frustrated this week as I was teaching Maria new sight words. She just didn’t seem to be remembering them from day to day and word recognition is a huge strength of hers. Lots of crazy thoughts were running through my head..is this it? Will she ever learn anything else new? maybe her brain has reached it’s maximum capacity?.. a lot of crazy thoughts. What i should have been noticing was that she has been gradually starting to call herself “Maria” instead of “Aria” and that she has been putting a lot more end consonants on words. She was having an oral motor growth spurt leading to this glorious night of straw drinking and that was enough for her body to take on this week. I need to remind myself more often that when I am frustrated about progress in one area I need to be looking for progress elsewhere. That being said, please God, let her drink from the straw tomorrow!!!

Maria continues to move forward at her own steady pace. I know she can accomplish all things, just in her time frame, not mine. Excuse my French, but today I think we can officially say f*** you West Syndrome, Maria won!!!


Four daughters.  Nothing is ever going to be equal when you have four kids, but what happens when one child gets 90% and the other three have to split the 10%?

Our oldest, Christina, just recently finished a year long journey of applying to colleges and making the final decision of where to go.  There was no doubt in anyone’s mind that she was going to live away for college.  She has been wanting to move out for a while and I remember how I felt at her age and encouraged her to apply near and far.  I would NEVER have stayed at home at her age. Surely we would get enough aid, even the FAFSA said we would.  Well, after some exciting days of acceptance letters, a couple sad days of rejections, followed by a month of financial aid awards and negotiations the decision was made under a cloud of tears.  Reality set in that we are not rich enough, nor are we poor enough, to send Christina away to school without incurring substantial loans.  The schools did not care what the FAFSA said. HA! She decided to go to the local University, which is a great school, but just not what she dreamed for herself.  She is an amazing young woman though and is accepting it quickly and starting to get excited.

I know how blessed we are to have a child headed to college, but that didn’t change the elephant in the room during our discussions, Maria.  I had to quit my job when maria was born to give her all I had to get to where she is.  When she was diagnosed with West Syndrome, she still was not receiving medicaid and our medical bills soared.  Then, finally we found out what would cure her was not available in the US and not covered by any insurance.  We sacrificed.  We all sacrificed.  The lengths we went to help Maria are not filled with regret in the slightest, but on days when I have to tell my other children no to their dreams, I cry, a lot. 

When a typical child gets sick or something catastrophic happens no one would ever questions the lengths one would go to for their child.  Sometimes, with special needs, it is different.  When we decided to go ahead with the experimental drugs,  I remember that jerk of doctor saying to us “She has Down Syndrome just let her go.  You have three healthy girls and this will bankrupt your family.”  I hated that man.  But, the fact remains that some people just do not see her life as worthy, as say, Christina’s.  When Christina was born I was 22 and much poorer than I am now but no one asked me if I wanted to give her up for adoption.  Yet, with Maria, having a stable family, being 34 , I was asked that question before my c-section drugs even wore off.  I remember saying “Why, I know kids with Down Syndrome are slow, but what else is wrong with them?”  I was given “the book” of everything that could potentially be wrong with her and was told how hard it is on a family.  We would have to make sacrifices.

Ed and I have made lots of sacrifices and the only one that drives us insane is the lack of sleep one gets when their child has sleep apnea and some neurological issues that prevent her from sleeping soundly,  I have gained 30 pounds of stress fat and Ed walks around like a zombie most days with just utter exhaustion.  But, that’s okay, it is our child.  However, when I see her sisters make sacrifices….. well I go through a huge array of emotions. We can no longer just up and go anywhere we feel like.  I have missed many  sporting events my girls were in when i couldn’t find a sitter.  I usually try to avoid taking Maria either because she can’t  handle the noise of the indoor sport or she would just run away at the outdoor events and I would miss the whole thing anyway.  I am told this will get better, but I keep waiting.  My older girls have had to miss last minute social events because they had to babysit at home while I went to work.  I wish teenagers would plan things in advance, but that’s not how it works :)  (On a side note.. I dream of a day when someone will call Maria on a whim and want to do something with her.  Even her own grandparents have never taken her anywhere.  Her grandfather calls all the time to do stuff with the other kids and it has never dawned on him to see if Maria wanted to go.)  But, the biggest thing my girls have had to sacrifice is having our attention whenever they need it.  All three of them are pretty independent and not very needy but there are definitely days that they have to book a time slot to talk to me after Maria is sleeping.Even though I know they are loved no less I am sure it has made them feel second best.  As a mother, that’s a big punch in the gut.

Four daughters? Nothing will be completely equal. But the one thing that makes us all appreciate what we do have and the time we have with each other is our love.  Any one of us in this house would sacrifice again and again for any one of us if need be.  We are a family that has been dealt many blessings and the elephant in the room has taught us to be grateful for anything and everything we have.  That makes sacrificing a little easier :)  

Christina’s favorite band, The Avett Brothers say it best:   “Always remember there was nothing worth sharing, like the love that let us share our name.”



Giving Thanks

So tomorrow is Thanksgiving and most people I know are blessed enough to be having a huge meal (myself included) where they will get  to say Grace, stuff their guts, watch other people play sports and enjoy a drink or two.  Some may even begin shopping for the next overindulgent Holiday before their food is even digested:)  We are a blessed group of people.  That being said, many of us will still complain about our troubles.  I am going to try to truly think about my unbelievable blessings.

I have noticed over the years that the most horrible things that have ever happened to me or to people I love have also been the source of the greatest blessings.  If I write down on paper the “bad” things that have happened it can seem overwhelming, but I do believe that those are the moments when divine intervention has occurred. In the last several years…..

1. 9/11 -my father lost many business associates in the World Trade Center Collapse

2. I’ve had 2 confirmed miscarriages

3. I had a child born with Down Syndrome

4. I had a child diagnosed with West Syndrome

5. My best friend lost her husband and father to their infant son due to a sudden heart attack

6. My mother was diagnosed with a crazy rare deadly form of cancer

I could go on…. but you get the point.  But here is the reality of what has happened……

1. My father had a dental emergency on 9/11 and was not in the WTC at 8:45 am as usual

2. It’s been discovered that I have some gene mutations where my chances of having a child with a chromosome disorder is very high.  The children I miscarried were most likely extremely ill and it was a blessing in disguise that they were able to bypass this Earth and head right for the good stuff🙂

3. As a friend once said ” Down Syndrome is the Cadillac of disorders” and she was right.  Although there are challenges -the rewards for  myself and everyone she meets are 100 fold.  When she runs up to a stranger in the mall and hugs them and you hear back “you have no idea how that has just made my day” – that’s a blessing.  Also, the amazing people I have been able to meet, honestly, amazing, because of our children.

4. West Syndrome has changed my life.  The absolute blatant intervention from above to give me and the doctors the wisdom to help Maria has without a doubt solidified my faith in something beyond this world. I was given wisdom and driven by something way beyond my power for about 6 months so forcibly that I could never deny that miracle, nor can I ever make anyone understand it.

5. My best friend Erika is amazing.  The thanks I can draw from that day, and I think she can too,  is that her son Evan is a healthy, growing beautiful boy.  Her husband, Gary,  died in bed sitting up with Evan (4 months at the time) next to him.  The fact that Gary did not fall over on top of Evan and continued to protect him even in death is beyond a blessing.  We have all learned to not take life for granted and can be inspired by watching Erika continually push on to give Evan all she can.  You don’t get a blessing like having a friend like Erika everyday.


6. Leiomyosarcoma -a rare and aggressive cancer. My mom was having issues with fibroids and had to get a hysterectomy. While under they discovered the tumor. If the surgery had been even a month later she may not be with us today. The blessing of fibroids!!!

Life has tested me. Life has dished out some crap. But when I look at my blessings, my luck, I realize I am the most blessed, the luckiest, person in the world!
Happy Thanksgiving!!!

September.. and so it begins.

I write today not to make a laundry list of complaints about our antiquated education system, but to further my goal of acceptance for all by giving a little insight into what it is like to get your special needs child a good education in 2013. 

I started last October by writing to my district’s special education department that I was not going to send my daughter Maria to self contained class the next fall for Kindergarten.  I was planning on mainstreaming in general education and I knew it was going to take time to make all those pieces fall into place and that this was going to be new for many people involved.  My email was ignored.  I bothered them a few times and then went over their heads to a school board representative and low and behold I got a call the next day :)  The months that followed consisted of them testing Maria to prove their case for a self contained class (where they would receive the maximum aide from the state) and me trying to gather evidence from teachers, therapists, advocates, other special needs parents and a great lawyer friend who helped me decipher the NYS education laws.

I received a call in march from the district’s school psychologist.  It went something like this:

Him” “Mrs. Schultz!! What a beautiful girl you have.  Loved testing her!  I usually don’t do this but I don’t want to blindside you at her review meeting.   I am recommending a self contained classroom for Maria at the meeting.  It will be non-academic based.  She tested ‘unteachable’.  She’ll learn great life skills like getting dressed by herself and how to go to the store!  It’s going to be wonderful.”

Me ” Are you serious?  She’s 4!  I appreciate your call but I will give you the heads up that i won’t be accepting that offer at the meeting.  I want her with typical children.  Being with typical children is how she will learn life skills and I think she is teachable.  She’s 4, I’m not giving up yet.”

A few days later i got another call from him playing some more games to try to get me to cave, including that “Maria could never handle all the new testing”.  Again, seriously, she’s 4 and I don’t give a rat’s ass about testing. The next day i sent a letter to the CSE chairperson explaining  that i would be bringing an advocate to the meeting from a group that the district knows comes backed with pro bono lawyers.

Wouldn’t you know it?  The psychologist thought about about it and changed his mind and felt the best placement for her was an integrated setting with typical children🙂

I went to the meeting (with my advocate), got them to agree to a personal aide and all the services I wanted.  I got it all in writing and then dropped the bombshell that Maria would be attending a private school in a different district.  They were not happy.  They now have to reimburse the other district for whatever the new district decides is best for Maria.  This new district is not flipping the bill so they are more than accommodating🙂

I was so relieved this was all over.  I got her in the school I wanted with all the extra help she needed (personal aide, OT, PT, SEIT, ST). Now, don’t get me wrong, so far I really like the school she is in, but I was a little surprised at some people’s reactions to her being there.  It’s not the kids, never is. They are awesome and love Maria, but some adults just don’t agree this is where she should be.  Every move she makes is  watched like she is under a microscope and everyone’s reactions to her moves are mixed.  If she sits for circle time and then gets up it’s viewed as “Wow, she sat for the whole circle time” or “Well, she just got up and walked out of circle on her own when we were done without being told to.”  Keep in mind that 2 other kids left the circle, but because they are “typical” they are “just being kids.”  

It’s exhausting!  Most people have accepted the idea of her there or are on their way to accepting it, but I feel like “it’s fucking 2013!! Why are there so many people who still can’t accept people that are different?  Why hasn’t special education realized that children (both special ed and typical) in integrated classes do so much better in life? Why are people so close minded? Why does anyone feel they even have a right to have an opinion about where I send my kid to school?  When it came to my older girls, I never had to beg, plead and threaten for someone to allow them the education they deserved.  Damn it!  Maria is only in Kindergarten!  We have a long way to go. Crap, I really need to start exercising so I have stamina for the next 15 years and beyond of fighting ignorance.”  ( my mind can get carried away sometimes..🙂

I’m not having a pity party, but I will never again complain about filling out a simple registration form for my other kids’ schools.  This is America.  It SHOULD be that easy to get every child an education they deserve.



Expectations and Acceptance

I preach a lot about acceptance in this blog (it’s even subtitled “acceptance for all”) However, this past weekend I had another realization that maybe I still haven’t fully accepted Maria myself.  This may be really hard for some of you to read, but I am trying extremely hard to be as honest as I can with myself in this blog.

This past weekend was my youngest sister’s wedding.  I was so excited to see her get married and equally as excited to see my siblings and extended family that I don’t get a chance to see as often as I would like.  Maria was the flowergirl.  She had her  dress, shoes and cuteness factor to go along with it.  However, Friday was the rehearsal.  On her best day, Maria would have been restless in the church pew, but she would have been in a good mood and generally would have done what she was told.  This was not her best day.  She was tired, over stimulated, and acting out even more than usual after an EEG the previous day at the hospital.  She whined, she cried, she refused to cooperate.  The rehearsal dinner was slightly better, but being a new place , had to touch everything and was spilling a drink with a straw all over she  was given by a man there.  He stared at her from across the space watching her not be able to drink from a straw.  (This is an oral motor skill she still has not conquered).

I found myself, for lack of a better word, embarrassed all evening.  Special needs parents may be the only ones who get this but, it is just different when your special needs child misbehaves.  A typical toddler can act out and most people don’t even notice.  It is just accepted that they are young and they will have tantrums.  When Maria acts out it is perceived that she is that way because of her ‘special need”. People stare at her and they stare at how I parent her.  It is an attention that i don’t want and Friday i found myself getting mad at her for it.

i wanted to have a great weekend with family. I wanted to relax, drink and not talk about DS.  To be brutally honest, I just didn’t want her there.  I know that is uncomfortable to read.  It is uncomfortable to write, but it’s the truth.

I drove back from Rochester to Buffalo that night in hopes of getting Maria to bed early so that she would be a little more manageable the next morning for the wedding.  I cried the whole way.  I was so angry that she behaved that way and at my lowest point I even yelled at her “what is wrong with you.  WHAT IS WRONG WITH YOU?!!”  Let the judgement begin.  No one can make me feel any worse than I felt at that moment.

I realized a lot of things this weekend.  Our day to day life with Maria is fine.  Sure people stare at her (and me) but I honestly don’t care what strangers think.  But, put in pressure situations with people whose thoughts I do care about (aka family) I want her to be perfect.  I don’t want pity from my family.  I feel the need to show them that I am the same Kathryn they have always known.  I want my loved ones to think that I am still the strong one, physically and emotionally in the family, but I am not.  Maria has broken me.  She has broken so many of the bad parts of me, which i am so grateful for.  But she has broken some of things I liked about me as well.  Emotions catch me off guard now and I don’t enjoy not being in control of my emotions.  My stress level is through the roof with constant worry and always having to be one step ahead of her since many of her actions can be unpredictable.  These are all things that come with being a mom, I know, and maybe when I do fully accept that she is different is when I can relax and treat her the same.  Maybe than I can stop expecting more from her than I did my typical kids in my effort to prove she is the same.

I called a great friend on the way home that night while I was crying and she simply said “Kathryn, there are some things she is just not ready to do and that’s okay.  Sometimes you just have to accept that she’s not ready.  Sometimes you have to leave her at home and just take the other kids. Get a sitter and enjoy your time with your family.”  It felt so good to have someone give me permission to not expect too much from her for once.

Alas, Maria was the flowergirl the next morning.  She literally ran down the aisle, after practicing many times to go slowly and as soon as she got to the altar Ed whisked her away to a sound proof playroom for the ceremony where she was good, as expected🙂

appreciate the moment

I remember my last summer before my senior year of college.  I was in Fredonia, NY (my college town) and leaving the next day to take amtrack back to my parents in the Hudson Valley for the summer.  I spent the day with a great friend at a creek.  (in case you are reading this, Mia Painter -it was you:)  We had known each other for three years but I learned more about her that day than in the previous 3 years. We shared so much about our lives with each other.  We were polar opposite in most of our beliefs (still are) but we both had, and I think still have, a great respect for each other.  After debating abortion and God for a while we agreed to disagree and were silent for a minute or two.  Mia turned to me and said

“Stop.  Appreciate the moment.”

We both just stayed quiet and I took a mental picture of where we were and how I felt with such an accepting friend.  I also remember realizing that life as we know it was going to move on and change, for better or worse. I left the next day for my parents.  I don’t know if I even talked to Mia again that summer, but life did change.  I got engaged and few months later was pregnant and running around like a crazy person working and trying to tie up the college portion of my life.  Graduated 4 months pregnant and was married a month later.  I lost touch with a lot of people because we didn’t have the luxury of social networks and my life became vastly different from my single friends.  But, what Mia said that day at the creek has always stuck with me.  Every time life feels as if it is moving too fast I have stopped, taken a mental picture and appreciated the moment.  Times that others would find mundane, like watching the kids all enjoy a movie together or seeing the family all sitting down at dinner and laughing – I have to mentally take pause.

Christina will be a senior in High school in the fall, has a fairly serious boyfriend and if she passes her road test in 2 weeks, I may never see her again :)  Julia, a sophomore has discovered the solitude of her room.  Anna will be starting 6th grade and I know from experience that she will go from a kid to a young lady in the blink of an eye in the next 2 years.

Then there is Maria.  So many days I spend waiting for her to grow up.  Things move so slowly with her that I get really frustrated.  But i have learned, the hard way, that with someone like Maria I cannot even BEGIN to predict her health or status a year from now, so I BETTER appreciate the moment.

I wish life would slow down, but it won’t.  So, when you are done reading this, close your eyes and appreciate everything you have right now, right this moment.


Today Maria had her graduation from Pre-K.  Yes, even at 3’1″ she will start Kindergarten in the Fall.  The ceremony at the time was not overly emotional for me, probably because she will be at her preschool all summer for her ‘summer school”.  But, when I got home i started sifting through the photo album her teacher made for us and so many feelings of gratitude came over me like a wave.

When Maria started preschool there she was still just learning how to walk with braces, she could only eat stage 2 baby food and she had only a couple consistent words.  She was 2 1/2 and still recovering from that nasty seizure disorder among other crazy medical mysteries going on with her.  At the time I could only dream about her eating like the other kids, running around a playground, talking or having real connections with other kids.  Don’t get me wrong, she has a way to go still, but the braces are gone, she speaks in simple sentences (even though most cannot understand her still) and she is chewing like a champ.  Her academic skills are only mildly delayed and she surprises me everyday with what she “gets.”

I give credit to her teachers and therapists, but mostly, just to Maria.  She wanted/wants so badly to be like other kids that she has worked her butt off everyday to learn even the simplest of tasks.  Almost nothing comes natural to her.  EVERYTHING must be taught and learned and she gets up everyday ready to learn more. I am so proud of her!!!

I am soooo grateful for her health this last year making it possible to reach so many milestones.  I pray ( and ask anyone reading this to say a prayer) that she remains healthy for many more years to come.  I can’t wait to see how much more amazing she is going to be. Thank you to all who have supported Maria these last few years and have helped push me to expect her to be all she can be in spite of society and the doctors’ expectations.