How Families for HoPE has saved my family

By James Pruitt

For those of you who did not get a chance to meet me at the 2016 Families for HoPE Conference, my name is James Pruitt, and I have a 3-year-old daughter, Emily, who has Semi-Lobar HPE. We just got back from the conference, and it has been a truly life changing experience for me and my family.

Today, I wanted to write a little and share some of my experiences as a dad at the conference, and why I would make any effort, no matter what it takes to come back.

However, first I want to give you a little background about me and my family so that you know where I am coming from. That way it will all make sense.

In 2012, My wife Jessica and I got engaged on Christmas Day. In January of 2013, we found out we were having a baby. A few weeks later, we went for a sonogram and learned of the HPE.

The day we learned about the HPE, we were told we had about 2 days to decide if we wanted to abort the pregnancy. We each prayed on it and decided to keep the baby, and give her a fighting chance. As we researched names, we found that Emily means ìStrong Willed and decided she would definitely need that to survive what was to come.

The pregnancy went along with a few rough patches and constantly being told she wouldn’t make it, and that she didn’t have a chance of leaving the hospital.

Many of you have heard the same stories, and so you know how the medical field, who probably learned all they know about HPE by reading about it on the same outdated websites we did, often react.

So, to make a really long story short, in early July, my family had a major blow up that left me an emotional wreck, and having absolutely zero trust in my father, who was one of my biggest supporters in many ways beforehand.
All this happened with the baby due in just a few weeks.

We scheduled C-section for Aug 5, but true to her ìStrong Willed name, Emily decided to do it her own way and come July 31 at 230 am. She was 5 lb. 12oz and 15.5in. She hasn’t grown much since then.  At 3, she is now 16 lb. and 27.5 inches.

She has Semi-Lobar HPE, microcephaly, a large dent in the top of her head where part of the frontal lobe did not form, Skeletal Scoliosis with 4 Hemi-vertebrates, and a cleft soft palate.

However, she was strong willed. After only 10 days in the NICU, she got to go home. But, it was a struggle. Although she didn’t have as many medical issues as many of the other HPE kids we met, she has severe motor skill developmental delays and is slow to grow. She also has very little control on the left side of her body. Her right hand and leg are much stronger and more controlled.

I was struggling to make ends meet, and eventually wound up working as a Correctional Officer at a small prison near where we live, which is where I still work to this day.

Over the last 3 years, we have had many struggles financially, losses in our family including my mom, and my mother in law having severe liver problems with frequent hospitalizations. Balancing all that while still trying to do what was best for Emily has been a huge struggle for all of us.

We got to where we were always just waiting for the next big crisis to hit, and never knowing where it would come from.

Early this year, things got really bad. Frequent illnesses from our entire household had us at a breaking point, and our marriage was falling apart. We started fighting constantly, and couldn’t even talk about Emily’s care, or even small things like what to cook for dinner without it erupting into a massive argument.

Coming up to the conference, we had even discussed (usually in heated arguments) getting a divorce. It got to a point where we were making threats, and had to at least come to agree to not use Emily as a weapon to hurt each other. We both at least agreed that the person who would be hurt the most by that was Emily, and neither of us wanted that.

So, at long last we got down to time to go to the conference, and we made it.

I cannot express how much this time meant to me and my family.

For starters, during the men’s meeting, several talked about their marriage difficulties, and someone (I am sorry, I cannot remember who said it to credit them properly) said we decided we had to focus on something bigger than ourselves and work it out.

That really hit home for me. Although I struggled with it, I knew that was what I needed to do. I have always said I had to do what was best for Emily, and that is what is best for her. Through talking with the families, we also found some great ideas to help us do that.

I also realized through the conference that we are both experiencing severe burnout, not just from Emily’s care, but from all the outside influences that have been getting in the way. Although our families are really important to us, we cannot lose sight of our focus. We have to take care of Emily and our household first and foremost.

I also don’t feel so alone. We connected with so many people that really understand the strain we have been under. With all the Doctors visits, equipment, coordinating schedules, etc., it has been a huge burden that we felt like nobody understood. Now we know that there are others out there going through the same thing.

Although our families try to be supportive, they don’t really understand.

I also have so much more gratitude now that things have been as mild as it was. I have seen families that have to make huge choices that are life and death decisions that thankfully we have never had to face. However, I am also more prepared than ever to make those choices if things go that way.

Thanks to Dr. Delgado, we actually learned more about Emily’s condition, and severity of it, that he thought we already knew. Being around, we learned what questions we should have been asking that we weren’t. Now, we are better prepared than we have ever been, and I feel much stronger.

As we are discussing buying a house to get out of our 2nd floor apartment, we are taking into account all the information we learned about home improvements, so that we can make a decision that our family can work with as we go through the years with Emily. We have ideas of what equipment would be good for her as well as a much better idea of potential problems, and they’re warning signs, that we need to watch out for so that she doesn’t regress.

For now, we are seizure free, but we know what to look for in case it starts to happen. For 3 years, we have been told to watch for them, but not told what to watch out for.

Having never been around epilepsy, I didn’t know the warning signs, and would have missed many of the early signals that I have been told about.
The sense of camaraderie that I found, and seeing that many of the other families have been through some of the same issues that we have fills my heart. My only hope is that in the future, we can continue to learn and grow as parents, and that I can give back to others.

For the first time, Emily also got to be around others with HPE. She made so many new friends, and we know she is missing them. When we show her pictures being posted online by various moms, she reaches for them and gives them kisses.

It was so heartwarming to see her around other kids and getting to play and even talk. I just would just about swear that all the HPE kids just have their own language. She had several conversations with various other kids and they all seemed to understand each other in ways we as parents couldn’t.

In some ways, I wish we could do this more than just once every two years.

On a final note, my new friend Dan Stauft told me (and several others) that the work he and Heather do with Families For Hope was their sons Legacy. They have done an amazing job.

Dan taught me so much, and I will always be grateful for him. The conversations we shared have changed my perspective on a lot of things, and I am working on making the changes I need to in order to be the best Dad, and husband that I can be.

I also realized that if my families struggles meant anything, I had to make something good come out of it.

Now, I am sharing my story with others. My mission is to help people deal with the struggles life throws their way while raising a disabled child.
This renewed energy and focus is all because of the experiences my family and I had at the 2016 Families for HoPE Conference.

You truly have given my family HOPE and I cannot express how grateful I am enough. As I finish this, there are tears running down my face. I love all my HoPE family, and wish you all the best.

6 Comments on “How Families for HoPE has saved my family

  1. Kudos to you and the Families for Hope team. Thank you for sharing your story! They have been a real blessing to all of us. I love hearing all that you learned and someday you’ll be able to pass that knowledge to others. Best wishes to you all and Emily.

    • Thanks Julie. You all have been a blessing to us as well. I wrote this just a few days after the conference, and things have gone even further since then. We are actually working together to plan out a podcast that Jessica and I are going to put out to help families deal with life issues.

      Over the last few years, I have read many blogs and websites on the various disabilities that families face. But, they almost all focus on the child and the disabilities.

      What about the rest of LIFE?

      Life doesn’t end just because you have a disabled child, and we are working with some people to put together a podcast talking about how to deal with all the life issues that don’t get worked on as much as they should. Its about really getting in touch with the rest of life, and not losing yourself to your child’s disabilities.

      We will also be working on some of the other issues we face with our kids as parents such as bullying, how to deal with other people out in the real world, how to work on your marriage and other family relationships (which often get lost spending all our time on the disabilities) and many other things we see ourselves and other families struggling with on a daily basis, yet none of the blogs and websites I have been reading really go into any depth to deal with.

      it takes a lot of planning to put together, but we are working on laying out how we have been planning this out since the conference, and I hope to get it rolling pretty soon so we can share our own stories, and hopefully help some other families realize they aren’t alone in these struggles.

  2. Wow! What an awesome story! Thank you for sharing! I agree…it would be nice to do this more often. It was so nice to meet everyone and share our stories and our children!

  3. James–It was wonderful to read your story. What a thrill to know that the conference has been such a help to your family. I have known some of these people online, but I agree wholeheartedly that meeting folks in person is even better!

    One thing you said really resonated with me: “Although our families try to be supportive, they don’t really understand.” I think all of us have been there. And it’s not just our families, but our friends, doctors and teachers as well. It’s our job to educate them all too.

    Kudos to you for putting your energy into something that will help your daughter, your family, and the HPE community in general, along with the wider disability world.

    Susan

  4. James, I’m so glad to hear that you two didn’t throw in the towel on the marriage, and so glad that you recognize the importance of not losing yourselves or “the rest of life.” Remember: “A burden shared is a burden halved.” Emily is a joy; her care and the worries you two share is a burden that won’t go away – but to leave each other in isolation would halve the joy and double the burdens. You mustn’t ever blame each other for the curve balls God and life throw at you, but rather, see each other as companions and partners in dealing with them, as well as in sharing the joys and rewards that come from that.

    Parenting and growing old – these things aren’t for sissies. I cannot even imagine doing either one without my best friend, my husband, at my side.

  5. Pingback: August 27, 2016 – Racing for HoPE | JoshTimmerman.com

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