Hidey-ho Neighbor

Every person needs to take one day away.  A day in which one consciously separates the past from the future.  Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence.  Each person deserves a day away in which no problems are confronted, no solutions searched for.  Each of us needs to withdraw from the cares which will not withdraw from us.

Maya Angelou

If you know what show the header is from than you are most definitely a child who was raised in the 90s.

So…how is everyone doing? It’s been a hot minute…or years…since either Matt or I posted on here, right? Quick Cliff Notes for anyone who is still reading this – Matt is still alive and thriving, the boys are busier than ever, I am still working towards finishing my Horticulture schooling.

The longer notes…Matt is doing really well. He has been on a liquid diet for almost 3 years and was sooo over it. I did a juice cleanse for 3 days once and resorted to chewing ice chips just to chew something! The will of that man to go 3 years on liquids, oompf. I am happy to report that he screwed up his courage to try to eat something and didn’t choke in the process. He now mostly eats soft and/or slimy foods, but still solid foods. The only thing we can attribute this to is the Grace of God. Matt has not started any new medications, he hasn’t started any new exercises. We recently took a trip to the Padre Pio shrine near our home and met with a priest who spoke in tongues and prayed over Matt. Something worked because any slight improvement in ALS is rare and comes from the one most benevolent God.

Matt continues to ride his recumbent bike at least 4x a week. He gets strapped in there pretty good. He has feet straps, hand straps, and straps to keep his knees from collapsing in and banging his shins against the central column. The weather has definitely been “April showers” so far this month so he has not gotten outside as much as he likes, but the boys sports do get us all out, rain or shine.

Our biggest hurdle recently was finding a caregiver. We are going on 7 years with me being Matt’s primary caregiver. That takes a toll on both our mental and physical capabilities, as well as a strain on our marriage. Good thing we are both stupidly stubborn and love each other with wild abandon, but we want better for ourselves and our children. Unfortunately, we learned the hard way that using an agency for staffing wasn’t fitting the bill. We had no control over who was sent out and a couple times had to send the person away the moment they got here because there was no way they would be able to adequately care for Matt. Who knew a search for a good caregiver we can trust would take years? I’m sure some of our friends in the community know this but we did not. We have had people start then quit multiple times…and sadly not because of us, I think. They had major life events happen, they had to move, they wanted more work than Matt needs, so many reasons that would always squarely put us back at the starting line. So I took a year off school to focus full-time on caring for Matt and the boys and to work with our support system to find someone(s) who could come alongside our family. Friends, as of right now we have 2 beautiful, loving caregivers who are here to provide for Matt every day of the week except Sunday! Hopefully I am not putting the cart before the horse because they just started this week, but after almost 9 weeks of no outside help, the prospect of 6 days a week is AMAZING.

The boys have been beyond busy. All of them have varying interests that always overlap. For the first time, this season, we are fortunate to have flag football and soccer practices at the same complex so one driver can knock out 2 events at the same time. Our oldest has found a love for jiu-jitsu. JP started about a year and a half ago and has really thrived. He loves the structure and the team and the respect that comes along with this sport. We have traveled for some tournaments and with each one we can see his confidence grow and his skills improve. Far and above anything else though, JP loves Boy Scouts. I know it is a tough one for Matt because he wants to be able to do ALL the Scout things with JP, but it is great to see our firstborn have something he can share with his dad. Matt was an Eagle Scout and JP is already planning his path there too. I asked him the other day what was his favorite extracurricular activity and without hesitation he said “scouts”. The troop is active and welcoming and JP has his “tribe” there which makes us so happy that he has found a place where he fits.

Kip continues to love any and every sport. I swear he could get into golf, tennis, badminton, anything that involves competition and this kid is in! He started soccer a couple years ago. This mama was SO HAPPY! Matt has always told the boys that soccer is a sport only girls play. I did play soccer, for many a year, and was dismayed that none of our boys were going to play. Fortunately, Kip had some friends, whose dads did not have such strong opinions, and they convinced Kip to give it a try. I love being able to coach him in a sport that I have so much love for, even if he is not always thrilled and says I am too hard on him. Football continues to be his main love. For his 10th birthday just he and I went to the Eagles home opener this past fall. It was against the Vikings – he was born in Minneapolis – so it was extra special. It was a night neither of us will forget…for the good and the bad. (Yes, Eagles fans are obnoxious, but the club is amazing and made sure Kip felt extra special for his birthday.) He still holds fast to his dream to play for Georgia before going pro.

Pax is still a whirling dervish. The boy can talk nonstop, eat nonstop, play nonstop and still have energy for more. He crashes hard at night when he finally quiets down and sits still. He has such a big heart for his friends and when he loves he loves with his everything. Pax might be our soccer player. He is all over the field so it will be interesting if as he grows we can channel that into an actual skill position. I also get to coach his team, but at this age it’s more organized chaos than soccer. Pax’s biggest flex is that he is completely unfazed by anyone who is “different”. He is our only child who won’t have any memory of Matt as a “regular dad”. I got a call from school today – always fear-inducing – letting me know that the autistic support staff asked that Pax be allowed to participate in an outing with the autistic children next week. As the staff works to teach kids who learn differently about how to interact in public, they recognized Pax always includes these kids in activities at school and doesn’t treat them differently than he does the other children in his classroom. I guess there are silver linings to this disease.

Lastly, me! I have loved going to Temple and leaning in to my passion for plants. Matt got me a hobby greenhouse for our anniversary and this year I hope to fill it with plants and vegetables and flowers. I have one spring semester left until I get my Associate’s of Horticulture, which I believe will nicely compliment my Bachelor’s of Fine Art from Tech, so I can work in some sort of landscape design space. Ultimately, I would love to partner with or found a non-profit that provides green healing spaces to families who have been touched by terminal illness, but baby steps. For the next year my focus is to have in place an awesome support team for Matt where he feels safe and happy so we can enjoy being a family and can pursue our passions. Also the boys – puberty is already starting! God granted me boys because I’m not sure I would survive a girl adolescence, especially if she would have been anything like me. These 2 older guys keep me on my toes and are turning my hair grey faster than I care to admit.

To that end, I was led to reboot this blog in hopes that I can get some “stuff” out that also helps other people. There have been a lot of times as we have waded through these past couple years where I have simply felt alone. Not that I don’t have friends here, or my own support with family, but that no one else is doing what I am doing. Experiencing what I am experiencing. Even Matt, he has his own unique experience with this path that is not the same as mine. It can be an isolating place to be. So, my hope is that now that I have gotten the updates out of the way, I can focus on sharing in a way that will give aid and purpose to anyone else who is in a similar boat. And if you have sent a contact in the past few years and I have not gotten back to you, I am deeply sorry. Life happened and this blog did not fit in that life. I hope to remedy that soon.