Tag Archives: parent support

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

Texas Parent to Parent Conference

This weekend I had the great pleasure of attending the 9th Annual Texas Parent to Parent Conference.  The TX P2P conference is attended by families all across Texas to find and share resources.  There are also sessions to help families along the journey.  I met so many families and really enjoyed the sessions I attended.  I was able to attend thanks to U.R. Our Hope.  I volunteered to help man the table in the exhibitor room and also be part of a parent panel during one of the sessions and in return my conference fee was taken care of.  Truly incredible.

Thursday, I signed up to attend training to become a Parent to Parent Support Volunteer.  In the training, I met many other families who came in to this special needs journey quite unexpectedly.  As I listened to everyone share their story, it was obvious that although our children all had very different struggles, there were so many similarities in our paths and we were all connected by the love and courage to fight for our children.  I’m so excited to officially be a parent support volunteer.  I feel as though I have grown so much in the past 2 years and have a wealth of resources available to me and would love to pay it forward and help other parents in any way that I can.  I really look forward to receiving parent matches and becoming a mentor to families along the journey on a more personal level.

Thursday evening, I also attended a meeting with Dr. Bruce Cohen where he spoke about Mitochondrial disorders.  It was very informative and interesting to hear from one of the experts in the field.  Dr. Cohen gave a great overview about what Mitochondrial diseases are and some of the advancements being made in the research to help correctly diagnose so many children.

U.R. Our Hope TableOn Friday, I attended several sessions and also sat on a parent panel in one of the discussions.  First, I went to a session on “Grief and Stages of Adaptation” which is a continuation on the training in becoming a parent support volunteer.  The session gave really great insight to the process we all go through when learn about our child’s diagnosis.  Understanding the research behind the fact that all parents do grieve the loss of the life that might have been while coming to terms and building new dreams in the life that is now before us was so helpful.  As we learned about all the stages and processes in which we all go through, I recognized how true they were for my own journey and I know now that I can recognize these stages in the journey of others which will be essential as I help to mentor parents who are new to this journey.

After lunch, I attended the session given by Dr. Mary Elizabeth Parker, medical liaison for U.R. Our Hope.  In her session, she talked about the diagnostic journey and resources for obtaining a diagnosis.  Myself and one other parent were on her parent panel and told our stories about our children and how we finally came to a proper diagnosis.  We were able to share our experience and answer questions for others who are also on the journey.  Dr. Parker talked about several cases she has personally worked on and how the healthcare system failed some of her patients which ignited her passion to help other families so that they don’t have to go through that.  We had some really great questions and feedback from the families who attended the session, and I’m so proud to have been a part of the discussion.  I hope that these families connect with us or find the resources they need to finally attain the peace of mind that we have.

The final session for Friday, was given by our speech therapist and another therapist in Houston about Augmentative Communication.  We are so fortunate that our own speech therapist is so well versed in using Aug Comm with patients and can’t wait to get started with Braxton.  I was excited to attend to get an overview on what options were available and how to get started with the process.  I did learn a few things that I hadn’t already talked to our speech therapist about and hope other parents who attended did too!

Friday night, a few of our friends of U.R. Our Hope went out for dinner to chat and just hang out at a local restaurant.  It’s always nice to attend these meetings and talk with other parents about their experiences.

Dinner with U.R. Our Hope

Dinner with U.R. Our Hope

 

Saturday was a short day for me.  I helped to cover our table in the Exhibitor room while Dr. Parker held another session about Mitochondrial disease and Autism.  I’m sure it was great!

U.R. Our Hope

 

 

I had to leave at lunch to help Joseph DJ a wedding out of town. Needless to say, it was a very long couple of days for me! But it was so rewarding! I was able to make a lot of new connections with other resources and other families who are also on the journey.  I definitely plan to make this conference each year! I’m so thankful to have been a part of it this year and look forward to the new opportunities that have arisen from participating.

 

 

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Filed under Life, Special Needs Child