Tag Archives: support groups

The 2-year Hurdle

Yikes! I inadvertently went on a blogging hiatus. Sorryyy! While things have been relatively ‘boring’ medically, I have managed to keep us all VERY busy! We have been taking advantage of things slowing down medically by actually enjoying our weekends and doing things that seem almost…’normal.’ Hmmm…imagine that!?

Movie time!

Movie time!

Earlier this month, big sister, Aileen, was invited to TWO birthday parties in one weekend!  That same weekend, I also took the kids to a Sensory Friendly Showing of “Cloudy With a Chance of Meatballs 2” at our local AMC theater.  This is the 2nd movie we’ve done with AMC and both times have been really great! I love that the lights are low but not completely dark and the sound is much lower than normal.  Even with his hearing aids, Braxton did really well and did not startle during the movie.  He also did really well at the birthday parties with his sister.  It was so nice to be able to let her have fun with her friends instead of having to stay home because brother was sick or needed to be on continuous feeds.

Shortly after, I started a new job and have been juggling my old job as well until the end of the month.  AND since I don’t have enough to do, I had also been working with U.R. Our Hope preparing for our inaugural fundraiser gala.  We planned a very nice dinner and silent auction with friends and supporters of the rare and undiagnosed community.  I think it all went very well, and it was so wonderful to see such incredible support.  As part of that weekend, U.R. Our Hope also hosted a conference on Patient Advocacy and we had the amazing opportunity to film with a documentary crew for an upcoming feature on the Undiagnosed.  I was asked to speak on a parent panel at the advocacy conference and also share our diagnostic journey with the film crew for the documentary.

It was in sharing our story and looking back on this past month of the most ‘normal’ we’ve ever had, that I realized we’ve reached this “two year hurdle.”  In talking to other families who have children with special needs, I’ve found that many say the first 2 years were the hardest and that somewhere around age 2 things seemed to calm down.  I really feel like that has been the case for us.

The first year was by far the most tumultuous.  We went through so much from not knowing how long Braxton would be with us, not knowing what the future held, not knowing the exact cause of all the issues, surgeries, countless doctors appointments, so many therapy sessions, and our relationship was tested in ways that should have broken us apart.  We spent so long just going through the motions, fumbling our way through our routine and this ‘new normal’ and I don’t even see how we did it.  Somehow through that journey I found people to walk with us and build us up to find the strength and the courage to stand up for our son, for our relationship, and ultimately fight to find answers.  The only way to explain it is that God was with us every step of the way testing us to the brink of all that we could handle and every single time he was there to catch us as we were falling and bring us back to where He wanted us to be.  We came out stronger than we ever could have imagined.

Around 15 months, something clicked for Braxton and he really started to take off.  It really hasn’t been ‘smooth sailing’ since then, but we have certainly seen easier days.  We have gotten most of Braxton’s medical issues under control and have learned all that we need to really be able to care for him.  I remember when handling the G-tube was the scariest thing I could fathom and now it is so much a part of him that I forget to mention it when giving a ‘medical history.’

Along the way I also learned how to focus on the positive aspects of our life instead of the negative.  Finding life’s blessings even in the darkest of times saved me from severe depression.  There have been times when I didn’t understand why this all happened or why my son had to suffer, times where I thought I just could not handle one more thing and then bam everything seemed to crash down.  But every time, I’d look down at my little boy and see his smiling face and I was reminded of everything I have to be thankful for.  I met families who were going through so much more than us and families who were having to say goodbye to their child way too soon and I realized that despite our struggles, we were blessed to still have our little man with us.  No matter how difficult things were, he was with us and needed us. Braxton has made us better parents and better people in general.

In every interview I’ve had to do, I’m always asked “What advice would you give to parents in your situation or who are at the beginning of the journey?” I always be sure to say that I want other parents to know that they are not alone.  This journey can be so lonely and so frightening at times that we feel like no one else on this Earth could ever understand what we are going through, but I’m here to tell you that there IS someone who understands! What I’ve learned is that despite the diagnosis, the special needs journey is similar for all who go down that road.  We all share many of the same experiences and have so much to offer each other in the way of support.  Let your guard down. Let someone come in and share their story with you. You would be surprised to learn just how similar their journey is to yours. We all share so many of the same emotions, fears, hopes, dreams, and we all want the very best for our children.  If you are just starting this journey, try to reach out to someone or allow someone to reach out to you and walk BESIDE you along this path.  Having someone to walk with you or simply be there when things get hard makes all the difference in the world.

After looking back on our journey as I’ve shared it over the past month I’ve found another important piece of advice; it gets better.  The first year is definitely tough, I’m not going to lie about that.  There is so much to learn and so many specialists to see to get all the answers you need to care for your child.  There will be sickness, uncertainty, unexpected hospital stays, financial strains, and a roller coaster of emotions, but eventually it all slows down and things get better.  We are down to yearly appointments with some of our specialists and still every 6 months with a couple.  We had 3-5 appointments every month for the first year.   This month we had 1.  Your journey may be different from ours and perhaps your child is more medically fragile, but at some point you learn to manage everything and come to a place where things aren’t so hectic.

Braxton walkingI know we aren’t in the clear and there is always the chance that something will happen to set off the cycle again, but for now I’m enjoying what has been the most ‘typical’ month we’ve had in 28 months.  I’m so thankful that I’ve found a support community both virtually and in person.  That outside support has been my saving grace at times.  We are finally making it over this 2-year hurdle and Braxton continues to amaze us.  He is doing so well with walking!  His balance is getting better and his pace is getting faster.  I just know that one day soon he is going to let go of my hand and walk away.

28 months ago if someone would have said “hey it will get better, he’s going to be walking and doing just fine,” I probably would have slapped them across the face because in my grieving that was the last thing I wanted to hear.  So if you are reading this and at the beginning of the journey, (I hope that you don’t slap the person that tells you this in person) since you and I are a safe distance apart, I’m going to go ahead and say it….IT GETS BETTER! Hang in there, this journey is rough but the rewards are great.  You will find the strength and the courage to carry on.  Find a support group either virtual or face-to-face to connect with someone who has walked this path before and can walk WITH you.  And just when you think you can’t take ONE more thing on your plate, know that slowly your plate will become more manageable and you might even find some space for dessert!

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Filed under Family, Kids and Family, Life, Special Needs Child

FTA Week, Day 2: It Takes a Village

Today’s topic is all about tubie resources and support!

I truly love this digital age that we live in! The internet has been extremely helpful in finding all kinds of resources  and support throughout this journey.  Facebook is increasingly instrumental in connecting everyone as well.

At first, we had one of the nurses in NICU take us in to a conference room and give us a crash course on how to care and use the G-Tube.  We had the chance to ask questions and practice with G-Tube Gina haha a doll they have to show parents all about G-Tubes. Upon discharge we  had our Home Health Agency to help us with the G-Tube, they taught us how to clean it and use the feeding pump and came once a week to check the site to be sure it wasn’t infected and to answer any questions we had.  We also saw the pediatric surgeon a few times for follow-up and he explained to us how to change his button if it ever came out, how to properly clean the site, and signs of infection to look for that would require us to come back in.

After that, it was sink or swim time.  We definitely felt alone at the beginning.  We timed all our outings around Braxton and stayed home quite a bit because we were unsure of feeding him in public.  As we were able to decrease the time he was on his pump, we spent a little more time out and about and were able to feed him discretely using the pump and backpack the Supply company provided us.  I remember lots of stares when we were out in public whenever we would set up Braxton’s feeding.  It was really uncomfortable for us and we ended up trying to hide it as much as we could.

After much online searching, I finally found the Feeding Tube Awareness Foundation, and that was the first time I really felt like we weren’t alone. Despite the many doctors appointments, I can’t recall ever seeing any other tube fed children (even though I know there are many).  I found their website and then their Facebook page, and the reality hit me that there were so many kids who needed tubes.  Their facebook page is extremely informative and active.  Parents are welcome to post questions and a few of the admins answer questions the best they can and also re-post the questions they may not have a complete answer for to the group for any of the other members to answer.  Not all the questions are of a medical nature either.  It can be anything from how do YOU include your child at family meal times, are there any products that would make your child more comfortable, to what is the best way to increase speed of feedings.  I’ve had several questions answered by other parents, and I’m so thankful for this resource.

The FTAF website has also been extremely helpful.  Not only did it help me realize we weren’t alone, I realized how much fun it would be to “dress-up” the tube site and that there was no need to be ashamed.  They have a page devoted to helpful products for tube feeding.  There are custom backpacks that can be made with any kind of fabric to truly personalize the tube feeding experience, there are special pads that go around the button that are much nicer than using gauze, there are belts that can help protect the button when wearing shirts that don’t button at the bottom, special adaptive clothing, just so many things that are actually made by other parents!  Necessity is the mother of invention, and so many amazing moms not only take care of their tube fed child, but take on the task of putting their talent to use to help other tubie families!! So incredible.

These resources and this amazing support group were really instrumental in helping us as questions arose that didn’t require a doctors help.  Even ideas on dealing with the stigma of tube feeding in public.  We grew thicker skin and acceptance of the situation and took control.  Our kid had to eat, so we stopped being so discrete in public.  Still very aware of the stares, but realizing that they weren’t all stares of hate or disgust, but possibly people wondering what exactly what we were doing because they’d never seen it before.  I wish more people would ask questions instead of just staring.  Staring is extremely rude, and it bothers the heck out of me, if you are curious, just ask! I’d much rather educate you than try to discern whether your stare is just plain rude or if you’re actually curious.

And THAT is EXACTLY why Awareness MATTERS!!!  This is why this week exists! So many people have no clue about feeding tubes, so I’m incredibly thankful for the efforts of the Feeding Tube Awareness Foundation being put forth to help educate the broader public about each of our situations.  The more people know, the less alone people feel and the less stigmatized tube feeding will be for everyone.

Tomorrow’s topic: “Been there, done that.” – Help for new tubie families.

Also, be sure to tune in to Austin’s KXAN at 12:40 pm for our live in-studio interview all about Feeding Tube Awareness Week!

For all Feeding Tube Awareness Week posts, click here!

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Filed under Family, Kids and Family, Life, Special Needs Child

Feeding Tube Awareness Week

Big sister and Brax :)

Big sister and Brax 🙂

Tomorrow kicks off Feeding Tube Awareness Week! I contacted our local news about running a story, and they invited us to come in to do a live interview in studio! Many families, like us, have no idea about tube feeding until they themselves are faced with the decision.   So, I’m thrilled to have the opportunity to share our story and help raise awareness for tube feeding. In preparation, we made a short video about our G-tube experience that we are sending the news station before our visit.  I also wanted to share it with all of you who may have always wondered, but were afraid or didn’t know how to ask about how we feed Braxton.

 

 

For all our Feeding Tube Awareness posts click here!

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Filed under Family, Kids and Family, Life, Special Needs Child