Tag Archives: hope

Thankful Thursday: Who Do YOU Run For?

While our last post is quickly shooting up to be one of the top posts, I don’t like to linger in negativity for too long.  I will be doing some further research on childcare for children with disabilities and the rights we have as parents, and I will be sure to pass that on since so many have to deal with these issues.

Today, I’d like to focus on something that is simply amazing.  A few weeks ago, a special needs group that I am a part of posted about an organization called “I Run 4.” Not too long after, I began seeing the group shared among many of the pages I frequent dealing with children who have special needs.  I finally visited the site and joined the Facebook group, and I can’t tell you just how moved I was.  Tears began to flow and my heart could just burst.

Who I Run 4 “I Run 4” is an organization that looks to increase awareness of individuals with a variety of illnesses and disabilities. They pair runners with an individual, who often times, is not physically able to run.  The runner can then dedicate their runs/competitions to the individual they have been paired with.  This gives runners a new motivation to keep pushing and the individuals they are paired with hope that someone out there cares more than they know.

When I first saw the website, I thought, “Wow, what a cool idea and great way to increase awareness.” I signed Braxton up to be matched with a runner.  I then joined the Facebook Group, and as I waited for Braxton to be matched I was overwhelmed by what I saw.

This group is extremely active! Posts can quickly become lost because it seems like there are hundreds of people posting every minute of everyday. But, there is so much hope and so much inspiration all day long.  Right now, if you can believe it, there are more runners than there are children signed up to be matched.  Yes, you read that right.  In fact, the runners are incredibly anxious to be paired with an individual and learn more about them.  These people are sooo willing to learn about our children and share our stories.  There are signs, shirts, tons of photos, and so much more these people are doing that motivates them but also brings awareness to many different syndromes.

So many different syndromes are being represented.  Everything from the well known conditions like Down Syndrome, Cerebral Palsy, and Autism to the more rare conditions like Braxton’s Rubinstein-Taybi Syndrome and others I had yet to learn about.

Every day you see some new tragedy being reported on the news, so it’s incredibly refreshing to see this group and the people who are a part of it, and it definitely restores faith in humanity.  I read through the posts as often as I can and I’m just in awe of these people who go out of their way to find new ways to raise awareness. The mutual support is just unfathomable.  Parents post pictures of their children cheering their runner on, reaching milestones for their runner. The runners post pictures of the miles they’ve run, the photos they’ve created, the shirts they’ve made, and cheer on their “coach” with every milestone they reach.

Braxton was matched with Andrea, from North Dakota, and she’s been awesome! She ‘liked’ our Facebook Page and she cheers Braxton on with each therapy session and the baby steps he is making.  And the other day when she wasn’t sure if she even wanted to go out for a run she got a babysitter over to watch her own kids and went out to run for Braxton. 🙂 This is the kind of motivation and mutual support this group inspires.

The love and hope that surrounds this group and all the people who belong to it is just wonderful. I can’t say enough great things about the people who envisioned this project and those who participate. If you have a child with special needs, I highly encourage you to join this group and have your child matched with a runner.  The runners are all chomping at the bit to meet your child! We were matched within a couple of days and for the runners it is taking a few weeks because so many are ready and willing to run for someone who simply cannot.  But trust me, it is SO worth the wait!!

Thank you to everyone at “I Run4” for all of your hard work and for making this organization a success!

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The Early Days (Part I)

Today marks 2 years since Braxton’s discharge from the Neonatal Intensive Care Unit (NICU).  As I mentioned in a previous post, I’ve re-lived those first few days over the past few weeks and although I’ve written about bits and pieces throughout the past year, I finally decided to write everything from the beginning.

Here is Part 1 of The Early Days – All About Braxton’s NICU Stay

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2 years ago, nothing could have prepared me for this journey. I clearly remember leaving our apartment at the crack of dawn, we arrived at the hospital, I got checked in, changed, did all the last minute tests and was hooked up to all the monitors. I waited what seemed like forever for the Dr. to come in and say it was time to go. We were having a scheduled C-Section because my 1st daughter was CS when she stopped responding to contractions (perfectly healthy now by the way) but my Dr. and I decided I should have a repeat CS to avoid any complications.

Nervous, anxious, and excited I walked back to the operating room. My daughter ran up for one last hug, she was terrified that a baby was being cut of me. I never explained in detail (she had just turned 6 at the time), and although I tried to reassure her, she was still scared of mommy being hurt. Reassured her one last time, and off I went.

Everything went well. At 7:58 am Braxton Joseph was born weighing 8 pounds 8 ounces and measured 21 inches long. We had a healthy baby boy and we were beyond excited.

Meeting Braxton for the first time

Meeting Braxton for the first time

 

I was wheeled over the the recovery room and waited for the nurses to finish their preliminary check on Braxton. Finally, they brought him to me to see him and try to feed him. We fell fast in love with our little boy.

Holding Braxton for the first time.

Holding Braxton for the first time.

But slowly, things unraveled.

I couldn’t get Braxton to breastfeed. He was coughing and sputtering everywhere. I thought I was doing it all wrong. I’ve done this before. What’s going on? The nurse came and tried to help and then she took him from me to the nursery. She said they’d bring him to me after while and told me to rest. My doctor brought Aileen in because she was really worried and wanted to make sure I was okay. After a while they wheeled me over to room where my family waited.  We all anxiously awaited the nurse to bring him back.  Dad and some family walked over to the nursery to try and see him.

Dad hanging with Brax in the nursery.

Dad hanging with Brax in the nursery.

A while passed and everyone returned, but I hadn’t seen my son. I called the nursery and asked them to bring Braxton to me. The nurse came and said she would be back to take him to feed. I was devastated. They formula fed my child despite my wishes to breastfeed and they weren’t going to let me try again. His blood sugar had dropped dangerously low and they were unable to bring it up with formula and were going to keep formula feeding him until his blood sugar stabilized. He was asleep when they brought him to me. We cuddled him, gave him lots of kisses, and took a few pictures and then the nurse returned.


I didn’t realize that was the only time I’d have with him that day.

Then, the world seemed to crash down all around me.

Hours later the neonatologist came in and finally explained everything. She began explaining that they had noticed several things “different” about Braxton. His ring and pinky fingers were webbed together, his 2nd and 3rd toes were webbed and crossed, his facial features weren’t “typical;” I was immediately dumbfounded and mad at myself for not noticing. What kind of mother doesn’t check her child’s hands and toes? I didn’t even notice! I was mad at myself. Then I was mad at the Doctor. This couldn’t be true. My pregnancy was PERFECT. I took better care of myself this time than I did the first time around. She also mentioned that Braxton had a severe heart murmur on top of not being able to maintain healthy blood sugar levels.  A million thoughts ran through my mind in that instant and then the Dr. brought what little joy I had left to extreme panic and anxiety. She reported that Braxton was being transported to a NICU at another hospital and I couldn’t go with him. I sobbed. I was mortified. How could they take my child away? I hadn’t even really seen or held him. Neither had any of our family. Everyone waited around and never got to meet him. His sister, oh his sister! She was so overjoyed and she hadn’t even had the chance to see him. I sobbed uncontrollably. Joseph held me and we cried together. We had no clue what was happening, why it was happening or how it would all turn out.

At 9:00 pm, Braxton was rolled in to my room in an incubator. I couldn’t even hold him before he left. I stuck my hand through the small opening and held his little hand until the Doctor told me it was time to go. Shortly after, I demanded a nurse come in and help me remove my catheter and get me in my own nightgown from home. 14 hours post C-Section and I was walking around determined to be with my son. Joseph followed the ambulance to the other hospital and did all of the paperwork to get Braxton admitted while I sat in agony 13 miles away desperately waiting for any kind of news. I called my mom, who was already 40 miles away and just 15 miles from being home in San Antonio, and she turned around and drove right back to the hospital. I didn’t even know how to explain everything, but she sat with me until Joseph returned. When he came back I was a wreck. He told me everything the admitting Doctor told him and tried to reassure me that Braxton was okay. He told me the admitting Doctor had a far different story than the Doctor who had him transported. He didn’t hear the murmur the previous doc did and he did his best to calm Joseph down. We learned that Braxton would undergo several different tests that night and in the coming days. Blood tests, genetic tests, brain ultrasound, an EEG and an EKG. My poor baby was going to have to go through all of this without me.

All I could think about was seeing my son. I saw him all of 20 minutes his first day in this world and I will never forget that day. How I felt, what I thought, the fear, the uncertainty, the angst.

I was released from the hospital the next evening; a mere 36 hours post C-Section. It’s amazing what will and determination can get you through. We went home, unpacked my hospital stuff and picked up some other things and drove to the hospital where Braxton was.

That night we met Stacy. I don’t know her last name or if she even still works there, but I owe so much to that wonderful nurse. She sat with us most of the night answering question after question. She relayed all of the test results that were available. I learned that they thought Braxton had a seizure just before he was brought to me to be transported. The Doctor never told me this. But that’s why the EEG was ordered. I was mad at the doctor for not telling me. I knew it was because I was already highly emotional, but still I should have been told. Thankfully, the EEG was read as normal, but this is when I first learned that Braxton had unusually high muscle tone. Just before transport, because of his high tone he was very stiff and rigid and his hands were fisted and turned in, making the doctor think it was a seizure. Maybe it was, but it’s possible it wasn’t. I don’t remember how long we stayed that night, but I remember Stacy. I remember her sincerity, her honesty and her passion for this job and the little lives in her care. She helped me through the wires to hold my son, really hold him, for the first time in over a day since he came in to this world. She talked to us about the nasal gastric tube being used to feed him. She helped Joseph change Braxton’s first diaper. Something I wish I would have caught on camera, but it’s forever embedded in my heart. Joseph was so nervous and afraid of pulling off a lead or the IV. He used about 10 wipes for that first diaper change. Haha, welcome to the dad club. There were tears, there were hugs, there were kisses, and surprisingly there were laughs. Simply put, there was hope in the room that night. Hope from Stacy, hope from Braxton making slow progress, hope in our laughter, hope from the on-call Doctor that they were going to find us answers.

Those first few weeks were such a blur. We split our time between the hospital and being home with my older daughter, trying to find a way to explain it all even though we had no idea ourselves what was going on.

A FISH for Trisomy 13, 18 and 21 found no variances in those chromosomes.  A full chromosomal analysis also came back normal.  I thought we were in the clear, but the doctors were all convinced that something was very wrong. Every syndrome they threw at me had a life expectancy of less than a year. As the test for each syndrome came back normal, I breathed a little easier, but every time, someone was there to tell me not to get my hopes up. But, in those first few weeks, hope was all I had and I held on for dear life. As Braxton began to stabilize his blood sugars and regulate his body temperature he was transitioned to a less urgent level of the NICU. He was tested time and time again with a feeding team because he was still not able to feed properly. I pumped breastmilk fervently and brought with me everyday what he needed. He failed his feeding trials and swallow study several times. Braxton had already regulated his blood sugars, was able to maintain his body temperature on his own, and he was gaining weight. Feeding by mouth was the last piece we needed to go home. At 2 weeks old the doctors decided Braxton would need to go home with a feeding tube. We discussed the options and ultimately decided to proceed with a gastrostomy tube because it was evident that Braxton would need the tube long term.  Admittedly, we thought he’d be without it in no time, but looking back, the doctor knew it wouldn’t be so quick and that’s why the g-tube was decided upon. Braxton had his G-tube placed at 2 weeks old and we spent the next week learning how to care for him and how to use the feeding tube.

I had the opportunity to room-in on his last night. The hospital had rooms set up that were basically like hotel rooms where parents could stay on the last night to have hands-on “practice” to make sure they’d be okay before getting sent home.  Braxton’s crib was wheeled in and I got to hold and play with him. I was able to set up his feed with a nurse on hand just in case I had any questions.  We made it through the night. Finally, we were able to go home.

After 3 long weeks we were discharged with a list of symptoms, a list of doctors and therapists to call, a load of supplies, but no definite answers. Despite everything we went through in that time, the journey had only just begun.

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Siblings Have special Needs Too!

This is copied over directly from Big Sister’s Site – I felt it was important enough to cross-post the entire entry.

Big Sister, Aileen

Big Sister, Aileen

 

 

Aileen: “Mom, Why didn’t you tell me?”

Me: “Tell you what?”

Aileen: “Why didn’t you tell me that when you had Braxton, you wouldn’t spend any more time with me?”

 

 

 

Ugh. Talk about a punch to the gut. Or a slap to the face. Or anything else you can think of that’s incredibly painful. I’m already hard on myself as a mother, but when your almost 7 year old says this out of nowhere, you sink to an especially low place.

I don’t at all think that I’m a bad mom, nor do I think I’m perfect (obviously). I’m only human, and we all make mistakes.

This conversation happened last week, and up until then, everything had been going great.  We had been struggling with Aileen acting out because she felt left out of the picture with all of Braxton’s issues, so we truly made a concerted effort to REALLY involve her more.  I signed her up for T-Ball even though I had no idea how I would fit it in, and so far it was definitely a great decision.  I try really hard to give Aileen my complete, undivided attention when brother is sleeping.  I make a HUGE deal out of her accomplishments and all the things she gets to do that little brother doesn’t get to do.  And still, she hit me with this.

Really, what it comes down to, is Aileen is only 6 and doesn’t truly understand that I’m not “ignoring” her on purpose.  It’s also the “nature of the beast.” The feeling of being the forgotten child is almost inevitable when you have a “typical” child and a child with complex medical needs.   As parents, we fail to see that BOTH kids actually have special needs.  Braxton has all of his medical needs and Aileen has a need to feel important and special in any way possible.  It’s easy to become consumed in the constant string of appointments and therapies and phone calls to this doctor or that doctor and our poor “typical” kid is left to fend for themselves because we think “Oh, they can take care of their self, they don’t NEED me like my other kid does.” But, the fact of the matter is they do.

Siblings have an overwhelming need to feel appreciated and recognized.  It’s easy to get lost in the shuffle, so parents have to make a true effort to remind them, they too are special and wanted and loved.  Sure, it’s silly to say that, but to a 6 year old, they NEED to hear that. Even if you had 2 perfectly healthy kids, the older child still needs reinforcement that mommy and daddy don’t love her any less than they did when it was just her and no baby around.

This is all still new to me, and I’m learning everything as I go.  There is definitely no manual, but here are some of the things I’ve learned from Aileen about recognizing the special needs of siblings:

  • Dedicated time without siblings – it’s important to take time out of each day to sit with your child and give them your undivided attention.  Schedule 15 minutes a day (or longer if you can). Maybe right when they come home from school to talk about their day and just hang out. Maybe before bedtime to talk about the day and read an extra bedtime story. Make sure the other sibling is in bed or taking a nap so your sibling child has your full attention.
  • Mommy/Daddy Dates – Make a date with your child! Yes, a date! Arrange childcare for the other child and take your kiddo out somewhere special where it’s just you and them. The park, a picnic, a movie, out to eat – let them choose!
  • Extracurricular Activities – Sign your kid up for a sport, dance class, gymnastics, anything at all! I wasted too much time thinking well we don’t have time for ___ because Braxton has this or that. Or caught myself telling Aileen we couldn’t do something because of Braxton. Well, naturally there would be resentment there if it’s HIS fault she can’t do something.  I try really hard to avoid phrases like that now so she doesn’t resent him.
  • Involve them! – This one is easy to forget. Siblings usually take great pride in being “big helpers,” so let them! Ask your therapists to include them in a session or ask your therapist to teach your sibling a special exercise that he/she is responsible for making sure little brother/sister does everyday.
  • Praise, Praise, and More Praise – Always, always, always praise your child for doing something great. Whether it’s helping you out with their sibling or doing great in school.  Do not forget to celebrate their accomplishments too! We also make a big deal out of getting to go spend the weekend with grandma. Brother doesn’t always get to go because he has appts or needs special care, so it makes Aileen feel extra special when she gets to do something cool without her brother.
  • SibShops – This is one I’ve looked in to, but haven’t been able to do. SibShops are special workshops for siblings of children with special needs.  They allow kids to meet other siblings so they can share their feelings about special needs and anything else on their mind.  The workshops have lots of activities to help support siblings and foster relationships between one another. Most of the ones I’ve found say they start at age 8, so it may be a while before I get Aileen in on one, but I’m for sure going to do it.
  • Pen Pal – This is something I literally JUST signed up for.  A couple of teens who each have a sibling with Rubinstein-Taybi Syndrome (which is what Braxton has) have been Pen Pals for years and have become great friends. So much so, that the young man’s parents allowed him to fly down to Texas (from Massachusetts) to escort his pen pal to prom. How cool is that?! Well, they decided to take it upon themselves to create a system of assigning Pen Pals for siblings of kiddos with RTS. I asked Aileen if she would be interested and she was so excited, so I sent over her info.  She was matched up with a little girl in California, so we are now anxiously awaiting that first letter! I can’t wait to see how this turns out.
  • Cards for Siblings – Another thing I JUST signed up for! I found Alayah’s Cards 4 Siblings on facebook. A few moms got together after one of their daughter’s started feeling left out that her brother was constantly getting attention and receiving so many gifts.  Their goal is to send the siblings something to make them feel special too!  A card on their birthday, a letter every so often to remind them of what a great big sister/brother they are, just something simple.  And I know that that small gesture can go a long way.  Please visit their page and consider sending them donations of cards and other supplies!
I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

Trust me, I do NOT have this all figured out.  Even doing all of the above, I still hear the occasional “you  love baby brother more than me” and it stings a little bit more each and every time and sends me in to a ball of tears.  In the past few months, I’ve really put forth an extra effort to do all the things I know to do, and we have seen an improvement in Aileen’s behavior and attitude at home, which is fantastic! We still have some rough days, but I will keep learning from Aileen as we continue on this journey together.

If you have any genius ideas, I’d love to hear them! I’m willing to try anything! Share them with me in the comments.

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A Special Mother’s Day Gift

Happy Mother’s Day to all of my fellow mommy friends! Here is the post I wrote over on sisters blog along with video of her reading a book she wrote for me. Braxton may not say much, but his sister says plenty for the both of them. I am so blessed and incredibly loved by these amazing kids. Braxton tells me he loves me in his own special way, and while I long for the words, I’m content with simply knowing what’s in his heart for me.

According to Aileen

“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.”

 

I have been so blessed with 2 incredible kids. Aileen will be 7 and Braxton will be 2 next month. There are plenty of hard times, but the good times always, always outweigh the bad.  Life is full of so much love and happiness with these kids.  We went to church this morning and then to get groceries. We are spending the rest of the day cuddled up watching movies….that is a great day for me.

This year, Aileen wrote me a special book for Mother’s Day.  I read it and barely held back the tears, but then I had her read it to me out loud and couldn’t contain myself.  So many happy tears. I love this little girl so much!…

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Full of Gratitude

We are now 2 weeks post-diagnosis.

Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.

While nothing has physically changed, our mind state seems to have shifted.  2 weeks ago, our diagnosis was met with trepidation.  We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.

2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it.  When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention.  That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.

Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me.  And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey.  Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another.  I also found a Facebook Group with over 600 members.

I am repeatedly amazed at the advancements technology has made.  10 years ago, I would not have imagined getting “connected” so quickly.  I seriously don’t know how I would have handled this journey without technology.  The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.

I’ve spent the past couple weeks researching and taking in as much information as I can.  Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness.  Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it.  It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.

The reality is that most of the research is outdated.  The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless.  Every child continues to write their own story, and I have no doubt Braxton will do the same.

Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off.  And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton.  He has been babbling like crazy in the past few weeks.

You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities.  I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.

One thing I’ve confirmed is that the feeding difficulties usually DO resolve.  Many of the parents I’ve talked to say their child did not need a feeding tube forever.  Most say by 5 or 6 their child was eating very well.  Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.

I’ve also learned that Braxton’s lovable social nature will never go away.  I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.

SillyMonkey.jpg

Making monkey sounds with mommy is hilarious

I’ve also ‘met’ a woman who is in her 30s and living completely on her own.

Are these things true for all children? Probably not.  Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.

Are there still hard times ahead? Absolutely.  The lifelong battles Braxton will have to face aren’t going anywhere.

The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing.  Some days will still be more difficult than others.  Again, not every day is good, but there is something good in every day.  And for the days that aren’t so good, I hold on to hope.  I remind myself of these positive experiences of other families.  I reach out to the new support network I have to find the “seasoned” mom to help me through.  I cannot express enough how truly thankful I am to have such a network in my reach.

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The possibilities are endless, and Braxton intends to prove that.

So, so much gratitude.  My heart is full again.

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