Author Archives: hopeformattie

Am I a special needs mom? I am a special needs mom.

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Back when Mattie was 4 months old, I overheard Jim calling Mattie “my special needs daughter”. WHAT?????? I was shocked, then sad, then in denial in all of 1 minute. That was the first time that anyone has said that aloud, let alone her father. My thought process went a little like this: Is that what people think? I don’t think that. I WONT say that! Am I the delusional one? Mattie is fine. She is not a “special needs” child.

At that point we were still not sure how Mattie’s PVL would affect her. It seems as the months passed and she was failing milestone after milestone, the “special needs” tag kept popping up. I eventually learned to say those words and accept it. I am not sure when that exact moment of acceptance occurred. I think it was always there. I was just not ready to admit it. I was still holding on to hope that everything was going to be ok.

We knew from the moment my water broke that Mattie’s life may not be easy. I had many days to think about it as I lied in my hospital bed. There were many long days and nights to think and pray and wonder and hope and accept. I am often asked how I can move forward after finding out my daughter had brain damage. The answer is not a simple one, as I have so many emotions, but I do know that I accepted the possibility of something going wrong long before Mattie was even born. Does that make it easier? Maybe in some ways it does. Some moms go through pregnancy with no complications only to find out after their baby is born that something is wrong, no warning given, not even a thought of something bad happening. These moms are not given a choice. We had a choice and we had time to accept our choice, no matter the outcome. I have no regrets; Mattie’s smile makes it all worth it, but will she? My biggest fear is that one day she regrets our decision. It is tough to even say that out loud and when I do it brings tears to my eyes. But I don’t want her to ever feel like she would rather not have lived then to be …disabled. So how do I teach her that???

A fellow SNM posted a blog just yesterday called “Mommy, will I walk when I am older?” OMG! I was crying reading this. This could be Mattie one day. What would we even say to her? How would we choose the right words to make sure she accepts herself for who she is and not become saddened by her limitations? I have a hard enough time coming up with a response when Joba tells me that one of the kids in his class does not want to be his friend… this is… just… mind boggling! I truly appreciate what this mom has to say about it. As I share and learn from other SNM, I continue to grow as a mom and I continue to gain the confidence I need to know how to handle moments like these.

This short essay goes around the special needs community quite often.

Welcome to Holland by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Of course I went through periods of anger, sadness, pity, mourning for what could have been. I still have those emotions. I am not sure they will ever fully go away, but I also have periods of joy, happiness, and amazement. Raising a special needs child has changed my life. There is no more ”should be” in my life (she should be walking, she should be sitting). The “should be” has been replaced with patience, understanding, love, and compassion at the samllest things. Every little or big milestone Mattie accomplishes makes my heart burst with love and joy. Mattie is teaching me to slow down and take it one day at a time.

As all moms do, whether you are a “special needs mom” or a “normal mom” we still want to see our children grow up happy, healthy, self-reliant, and confident in themselves and their abilities and succeed in life. We want our children to feel loved and show love because in the end “all you need is love”.

I can only hope this for my beautiful daughter, Mattingly Hope.

In a text from Sarah last week, “rockin the 4 point”. This made my day! Thank you 🙂

Success and a Heartbeat

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We have had an overwhelming response to the Hope for Mattie Jewelry Collection. As of today we have sold 67 pieces of jewelry. Words can not begin to explain how thankful we are to everyone who has contributed-by either purchasing a piece of this collection, sharing it with friends or by making a donation directly to Mattie. We are truly blessed to have so many amazing people in our lives. We just can’t thank Dawn enough for all of her hard work. We have kept her extremely busy these past few weeks and we are forever grateful for her and her beautiful designs.

As you all know, we are using the money raised to help pay for Mattie’s therapies. Currently Mattie’s therapies consist of OT 1 x week, PT 1 x week, Craniosacral Therapy 2-4 x month and ABM1 x month (4 sessions). The monthly cost of all of these combined is $745 and that does not include her specialty doctors, our nanny (Mattie is not able to go to a “normal” daycare) and everyday costs of raising a baby.

With the money we have raised from the jewelry line and from donations, we have been able to add an additional 6 sessions of ABM this month and will be able to continue adding more sessions in the following months 🙂

I have tried a few times to explain to you what ABM is, but a fellow special needs mom (SNM) created an amazing website for parents called CP Daily Living. She posted an article called “Filling in the Pieces: The Anat Baniel Method & Cerebral Palsy”. I encourage everyone to go and read this. She explains it in a way that I never could. ABM is the basis of Mattie’s therapies and I truly believe in it. ABM offers us hope that one day Mattie will walk.

My Aunt and Uncle were in town this past week. It had been a month since they had seen Mattie (during this past month was when we started doing the additional ABM sessions. Mattie’s last session was this past Friday afternoon). Friday evening was when my Aunt and Uncle saw her and they could tell there was improvement! It is not always easy for us to see it since we are with her everyday, but it really hit home that someone who does not see her everyday is noticing.

Mattie seems to be more in tune with her body. She is more comfortable, not so tight, and is starting to move more freely. She is starting to play with more cognitive toys. She was actively participating in a ball popper game with Joba just last night. It was the first time that they have both played together. It was such an awesome moment.

Jim and I have been thinking about taking Mattie to see a “master” ABM practitioner. Many parents on the ABM message boards have made the trip to California to spend a week doing intensive ABM sessions with the master herself, Anat Baniel. All of the parents who have made the trip have raved about Anat’s abilities and the progress they have seen in their children. Could Anat Baniel give us some insight on what Mattie needs to focus on and what her core problems are? More on this to come….

I can tell Mattie wants to sit up. She moves her body like she is doing a plank sit up (not an easy thing to do) and tries to sit up but cant. If you think about going from lying down to sitting, that is not the easiest way to get up. Rolling sideways, propping your arm, and then pushing yourself up to sitting is what we are working on with her. It is just a matter of time before she makes the connections and is finally able to sit up on her own.

I came across a voice memo that I left myself from the night Mattie was born. I had completely forgotten about it. I recorded her heart beating. It had become such a part of my life all those weeks in the hospital that I knew I would miss hearing it once she was born. Check it out below, it is only 30 seconds 😉

2:19am – 3 hours before Mattie was Born

Play Time

Joba doing Craniosacral 😉

Behind the Name

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When people hear the names Joba and Mattingly, we get an array of comments. Some think they are different, unusual names but only a true Yankee fan would know that these names are really not that unusual.
Joba is named after Joba Chamberlain, a current Yankee pitcher who was brought up from the minors in 2007. Mattingly is named after Don Mattingly, a retired Yankee first baseman who played his entire career (14 years) with the Yankees (1982–1995).

You are probably wondering why on earth we decided to name our kids after these players… Here is how it happened…

It is August 15, 2008. Jim, his dad, a few friends, and myself are sitting at a bar across from Yankee Stadium waiting out a rain delay. I am miserable but putting on a game face. I am 14 weeks pregnant and it is no fun watching these boys get loud, drunk, and obnoxious. After a 91 minute rain delay, we make our way inside the stadium to our seats. We have bleacher seats (at least they don’t serve beer in these seats) where the rowdy, obnoxious people watch the games from.
At some point in the game, a vote was taken on if we should name our son* Joba. Not just a vote between our group, but a vote between the entire bleacher sections of Yankee Stadium. It was unanimous. I was in trouble and so was this kid! So the nickname Joba was officially born. At my 17 week prego update, I sent out this to my friends

“Hi everyone! We received huge responses over Jim’s last update.
Everyone seems to dislike the name Joba 🙂
Jim has been calling the baby Joba since the doctors told us we were probably having a boy. It has sorta stuck. I find myself calling the baby Joba at this point, along with a few others 🙂
Just so you know, Joba is the name one of Jim’s favorite pitchers on the Yankees! Although, I will not name the baby Joba, I have a feeling it could be the baby’s nickname for some time!!”

So, that is the story on how Joba became Joba.

Disclaimer – I am not THAT crazy to name my son Joba, I mean what if he grows up to be the president one day! So his real name is James Bryan (just in case) 😉

Pronunciation: JAH-buh

*2 weeks prior our sonogram tech says she was pretty sure that we were having a boy, but since I was only 12 weeks prego, we should not go and paint the room blue. Well, Jim starting calling my belly Joba.

2 years later Jim and I find ourselves at a crossroads with naming our daughter. We have been tossing J names around thinking we could be the J name family. Janelle, Josephine, Josie, Jade, Jacie-we hated all the choices each other picked out. Again at 12 weeks our sonogram tech said girl, so when we confirmed it at 16 weeks we still did not have a name picked out. We stared to test out names each week but nothing stuck. Since Jim named Joba (see above) it was my turn to name our baby girl. Now it is Week 20 of my pregnancy and I am being admitted to the hospital to find out if my water really did break. We still don’t have a name for her. I am praying for her and don’t have a name to pray for. I end up calling Jim that night from the hospital and telling him I have a name and we need to agree because she needs to be named so people can pray for her. I said “her name is Mattingly”. Jim was in shock. Another Yankee name??? Why not? It is different, it is his favorite Yankee player of all time, and 23 is my favorite number. It was perfect.

So that is the story on how Mattingly became Mattingly.

We will be posting a picture a day for the next week on Hope for Mattie’s facebook page of Mattie sporting all her Yankee attire! Check it out! https://www.facebook.com/HopeForMattie

1 step back, 2 steps forward

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We went and saw Mattie’s GI doctor on Monday. The news was not great. According to GI, Mattie only gained 1.5 pounds in 9 weeks. In fact, Mattie actually fell off the growth chart. This differs from our Pedi and my growth chart. For some reason our GI uses the CDC charts and the Pedi and I use the CDC-WHO charts. Regardless, Mattie is not gaining the weight she should be. Her height was also taken using more precise equipment then our Pedi’s office and her revised height puts her into the 20%. So begins the effort to fatten this kid up 😉
We are already doing a lot of what the GI wants us to do. Several weeks ago we started to make our own baby food. We are trying to get her eating lumpier textures but she still spits out and chokes if it is too lumpy. We are going to have our feeding/speech therapist do another evaluation on Mattie. The GI doctor mentioned doing a swallowing test, but I don’t think we are there yet. Mattie has gotten a little better eating since we moved her back into her feeding chair (we had moved her into a more traditional high chair for a month). The GI also wants us to put Carnation Breakfast in her milk (once she is weaned 100% onto whole milk). Ummmm… Gross. Now it has been a long time since I had this stuff, but looking at the ingredient list I am not convinced that I want Mattie drinking this stuff. 99% of Mattie’s food and dairy is organic. I did come across something similar to Carnation called PediaSmart Dairy that is Organic and Non-GMO!! Woohoo! I love it except for the fact that it is 247% (yes, I did the math) more expensive. We just can’t catch a break. [I will leave the organic/non-gmo debate for another post] Other GI requests are to use butter, whipping cream, and olive oil when making her food. Yum! We have been able to wean Mattie off of her Prevacid so she is now 100% medicine free.

This past weekend, we were able to fit in 3 sessions of ABM in Sarasota. We spent a lot of time planting her feet, integrating her legs, and rolling. On Sunday, Mattie and I were working on rolling left and she was able to do it once with no help! I was excited. Sarah told us that she rolled left twice today with no help! I really think she is on the verge mastering the left roll. She has started to use her legs to propel herself forward. It is amazing to watch her. She never realized that she could move up/forward. For example, when she sleeps, she is in the same exact spot we put her in. She is making progress and it is awesome!! We are heading up to Gainesville later this month for 4 sessions and hopefully get in another 2 sessions in Sarasota.

I can reach my toes with no problem!
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Thanks to Jim’s cousin, Greta, we have found an alternative solution to purchasing an expensive bath chair! We have been trying to use a bath chair that is meant for kids that sit up but Mattie hates it. She has no support and it is very uncomfortable for her.
So we bought the recommended Eurobath bathtub for under $30. For right now it is perfect. Finally, bath time is calm and relaxed again. Check it out:

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The Hope for Mattie Jewelry Collection has been a HUGE success. As of my last count a few days ago, we have sold 39 pieces and more orders are coming in daily. Jim and I want to thank everyone who has helped by donating money or purchasing a piece of Hope. We are so grateful! We are going to be able to start Aqua Therapy this month and add a few extra ABM sessions as well. So… THANK YOU! xoxoxo

Mattie sporting her new Hope For Mattie necklace!
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Mattie pretty much over this “photo shoot”
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A Dad’s View

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Jess and I thought it was time that I wrote an update for Hope for Mattie in order to give another perspective of what it’s like being a parent of a child with special needs. It’s weird just saying that out loud. I find myself telling random people when they ask if I have kids. I don’t know why I do it, perhaps because it dominates so much of our lives that I can’t just say “I have a daughter”. Lately I’ve been making a conscience effort to not describe her as having special needs.

For those of you who have not yet had the pleasure of meeting Mattie, she is an extremely happy baby. She’s always smiling and happy to see a familiar face. She’s making a lot of funny noises right now as she tries to figure out how to express herself. She also cracks up laughing at the most random moments, which can be pretty funny in itself. In the mornings when I go to get her out of bed, she always greets me with a big wide grin and a high pitched squeal. Upon picking her up she will take a moment to rest her head on my shoulder with her arms out wide as if she is giving me a hug. This is the best part of my day.

This past year has been a blur. Time seems to move really fast and it seems like there is never enough time to really soak everything in. I’m not sure this will ever change as the thoughts and emotions we deal with greatly vary and are constantly changing. By the time I’ve thought about something long enough to organize it in my head and figure out how I’m going to mentally deal with it, five other thoughts have crept in. To me, that is the most difficult part of all of this-mentally accepting and dealing with everything. Sometimes it’s like being shell shocked-you feel numb and outside of yourself. Thank God for my wife! She is constantly doing things to help Mattie, from researching new therapies to organizing her doctors’ schedule(s), Jess is amazing. While I worry that she’s going to drive herself crazy in the process, there’s no denying that Mattie is so, so lucky to have Jess as her mother. I’m very confident I could not do this without her.

I know this is a blog about Mattie, but I can’t talk about her without bringing up Joba. The resiliency he has shown through all of this is nothing short of remarkable. Between all of the doctors visits and the weekends away from us while we are inGainesville, he never skips a beat. In a weird way he has made this whole process easier, providing comic relief, laughter and a well needed hug at the most desperate of times. Without him I would have lost my sanity by now. He’s also a great reminder that life goes on, regardless of the difficulties that we face.

Lastly, there are all of you-the family, friends and perfect strangers that seem to pop up just when you need them. The outpouring of support has been truly uplifting. Please know that Jess and I really do appreciate everything that has been done to help our family through this past year and a half. As we look to an uncertain future, Hope truly reigns supreme.

Moving Into Year 2

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At her eye appt last week, a lady approached me asking me how old Mattie was. When I told her that she just turned one, she was shocked and said “she is so little”. I for some reason felt the need to defend Mattie and said “she was born 9 weeks early” and turned around. This week at pedi office we go in to have Mattie weighed. As we lay her down on the scale, the nurse says “you can sit her up”. Aghhhhhhh!!! My response “she does not sit up yet”. The nurse was surprised. It was awkward for everyone.

This is going to be an interesting year to say the least. Most of Mattie’s delays, in the past, would go unnoticed since she was a “baby” but now that she is a toddler and not doing the “normal” things a toddler can do, the questions are starting, the stares are here, and my niceness is starting to waiver. We are shifting from Mattie the baby to Mattie the disabled toddler.

I can’t tell you the amount of times that people have told us that Mattie will be just fine. They say it with such ease, so matter-a-fact, that they believe it. As much as I want to believe that Mattie will be just fine, her difficulties are real. They are not going away. It is not as easy as just saying she is ok, because she is not and that is the reality of our situation.

We can’t take Mattie to the grocery store unless we push her in a stroller since she cant sit up in a cart. Well, pushing a stroller and a cart is not really possible with 2 hands! We have to bring our own high chair to restaurants since she cant sit up in a normal high chair. We have a stroller that works for now, but may need a stroller/wheelchair in the near future if she starts to outgrow this one. Her bath is ridiculous! We still bathe her in an infant bath tub. I have yet to find a good non-disabled bath seat that will support her and make her feel secure. It goes on and on and on.

It is taking some time to process this. Every time I see an adult with CP I can’t help but take notice. I know… it is exactly what I am complaining about. It is just that I can’t help thinking, is that how Mattie will walk or is that how she will get around? I want to give these people a hug and ask them about their life experiences. Are they happy? Because in the end all I want is for Mattie to be happy.

The question of the hour: at what point will Mattie reach her full potential? Do we try the remainder of her life to keep pushing her or at some point are we going to have to accept that she will have limitations? I have said in the past that I will not stop until Mattie can run a marathon with her dad… I hope and pray that this will be a reality.

Steady Progress

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Mattie’s one year well visit was this week. Mattie is now 17 pounds 13 ounces! She is in the 75% percentile for height and 5% for weight. She is really tall but not very big. We went through her history since our last pedi appt and then through her development. Dr. B places her around 6 months old and around 4-5 months gross motor. We are going to go back in 6 weeks for a developmental and weight check up and a shot (we are on an alternative vaccine schedule).  I was not happy with her weight gain, but Dr. B thinks she is still making steady progress. He wants to see her in the 25% range by her 2nd birthday.

We go to Gainesville once a month for an alternative physical therapy called Anat Baniel Method or ABM. It is based on neuroplasticity, the brain’s ability to reorganize itself and gain new skills by forming new neural connections. With help, the brain can, and does, rewire itself.

It is hard in my own words to explain ABM so here’s an excerpt out of Anat’s book “Kids Beyond Limits,” you can download a free sample of her book here.

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A 1st Birthday and A 3rd Opinion

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Mattie’s birthday bash went fabulously! She enjoyed the icing 🙂 I wanted to take her in the pool for the first time, but the water was a little too chilly for her. We had around 50 people come to celebrate this amazing milestone! Thank you to all that came, sent messages, or gifts! It is always much appreciated!!

I posted a few pics on facebook. So go check out her Hope for Mattie page (and Like It)!

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Our Preemie Display

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Yummmmmmmmy Icing!

We had a 3rd opinion ophthalmologist appointment last week and on Monday I took her back to her original ophthalmologist. Here is a little background info:

We were referred by Mattie’s neurologist to go see Dr. W due to Mattie having crossed eyes (strabismus). I knew Mattie’s eyes were crossing but I thought it would just go away since sometimes babies eyes cross. So we went to see Dr. W when Mattie was 5 months old. Dr. W told us to start patching her right eye to help strengthen her left eye. We did this 3 times a week for 4 months and saw no noticeable difference. She does not have a “bad” case of eye crossing, but it does happen when she looks at things closely or gets tired.

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Almost One!

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Only 2 more days till Mattie turns one!! It seems like this year has been the longest year of my life but then at the same time Mattie is still so little that she cant be turning one already! To celebrate her birthday on Tuesday, we have a day of boot camp plus an hour of physical therapy followed by my attempt to make it seem like she is a normal one year old by getting a birthday cake and letting her smash it all up. It should be interesting since she does not eat table food, never really smashed food, and probably has no idea what it is all for. Her big 1st birthday bash is next Saturday. We are having a pool party! Yes, there will be a million people here since I don’t know how to do anything small! I originally was not sure what to do for her 1st birthday. I thought about just doing something low key with just family, but again I want to do everything as I did Joba and we had 50+ people at his 1st birthday. I am going to make a “Look how far I’ve come table” with a preemie diaper, a collage of pictures from her first year and some of her tiny clothes. It should be cute.

For her birthday we were going to take her to her first Yankee game this Friday afternoon vs the Rays, but Jim talked me out of that with the “all that money plus we would only get to be there for a few innings” so I am taking a half day and we are going to watch it from home instead. I then realize what day Friday is. It is Good Friday. Exactly one Good Friday ago is when we got the news that Mattie had brain damage. She was 19 days old.

This is what I wrote last year:

We have just been lead into the neonatologist’s office. It felt like high school when I was on the way to the principal’s office. There was trouble in our future. I told myself whatever was said, I would not cry. I would be brave and strong for Mattie and Jim. As Dr. W is talking to us, I glance over at Jim. He is looking straight at the doctor. I wanted to reach out and hold his hand but he was sitting too far away. I remember looking out the window and thinking to myself, this is not happening and then saying to myself, there is nothing good about this Good Friday. I force myself to refocus.

We have debated on what to tell people. Do we use the words I can’t seem say out loud? Do we sugar coat this? You have followed us for the last 3 months, prayed with us, supported us, it is only right to tell you what we know…

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