One foot in front of the other

 One foot in front of the other as we make our way through these last weeks of school before summer! We are trekking along with our busy schedule as many of our activities are close to wrapping up for the summer. 

Alex continues to love learning and soaking up the last weeks living with his best friends at school. The calls and texts are less and less and his trips home fewer and shorter and I am loving every bit of it! Alex has made amazing friends and thrown himself fully into living college life. He loves learning, connecting with professors and other students and discussing philosophy and diving deep on topics not to mention spending time with his friends. It has truly been amazing to watch him find his way and to see the miracles God has worked in his life to get him to this day. 

Alex with some of his housemates

Maddy has had a great few weeks. She is thriving at the barn and smiling her way through every lesson. All of her hard work over the past year with PD is starting to pay dividends as PD is respecting her as the leader of their partnership more and more. She continues to improve in her handling and understanding as an equestrian and it is really fun to watch. She is also LOVING dance and art. She is in a semiprivate lesson with one other young, homeschooled girl and they enjoy their time immensely. Maddy is a few years older, and dance is one of the few areas where we have seen her take a bit of a leadership role. Ms. Joli has such a gift for loving her students and meeting them right where they are. Because of Joli and the environment Maddy's true personality shines at dance as it does few other places. 

Maddy and Ryla

I am healing well from my Thyroid surgery. Unfortunately, at this point the half of my thyroid left has not picked up the slack so I may need medication to keep my levels safe. I am unsure at this point whether we will start medication or give my body more time. My difficulty swallowing is already much improved and should continue to get better as the swelling subsides. We are still trying to figure out what is causing the severe GI pain that I have. I am in pain all the time and it goes to a horrible level if I eat or drink anything along with nausea.  We are waiting on results from an MRA of the abdomen that I had on Thursday. They have also ordered an MRI of the brain to be sure that we are not missing a neurologic disorder that is causing the GI symptoms. Since the beginning my Rheumatologist has thought this could be Crohn's disease as I have a gene and another autoimmune disease that are closely linked to Crohn's. Up until now, my GI did not think that was likely and did not want to order testing that could help us rule it in or out. However, this week he suggested the test my rheumatologist has been wanting so hopefully we can get that done and find some answers. I am having multiple tests and appointments each week now as my weight is at a dangerous level and all of my doctors are concerned about the effects of malnutrition and dehydration on my organs. 

Thank you to everyone who has called, texted, provided meals and prayed for me and the family. I would ask continued prayers for answers and healing. I am grateful for all the people God has brought into our life to remind us we are loved during the hard times and to celebrate our joys with us during the good times. Our lives are better because of the friends and family who walk beside us.

Ali

Walking through the storm side by side

 This past year has been so hard in so many ways...the physical toll of pain that keeps me from eating and sleeping, the malnourishment, but in many ways the emotional toll has been much harder. Many of you have been reading my blog for most of Alex's life so some of this may bring back memories of those extremely hard years. Alex and I spent most of the years from the age of 3-11 living in and out of the hospital, Alex battling for his life. The fear, the stress and the isolation of living with a fatally ill child cannot be described. If you ask anyone who has a medically fragile child, they will tell you that in the darkest of times you learn who your true friends are. Those years of Alex and then Maddy fighting a life-threatening disease were some of the hardest of my life. But those years changed who I am at my core. They changed my perspective on what is important. And they made me aware of what true friendship looks like. I no longer want easy, surface level friendships. I want friends who will walk through all seasons of life with me. I can name many friends who showed me (and the kids) what selfless love and friendship look like, but none more so than my friendship with Missy. In September of 2010, Alex was so, so sick. He had an illness that was causing fevers over 105 that wouldn't come down no matter what we did and nonstop seizures. Missy and Samuel arrived at the hospital for an MRI, but Samuel contracted an infection that landed them inpatient as well. The boys were in side-by-side rooms as Missy and I took turns checking on each other and supporting each other as we had hundreds of other times. Samuel took a turn for the worse and was moved to the PICU. When Ben came to get me later that night because Samuel was not doing well, and Missy needed me I never hesitated to leave my own sick son to be there for my friend. We spent hours talking, crying, and saying our final goodbyes to our precious boy. When Missy couldn't bear the thought of walking out of the hospital without her son, I kissed Alex goodbye and went home with them. Missy and I slept that night in Samuel's bed grieving and loving each other. Just 3 short months later, when Alex was life flighted to the hospital in critical condition and put on a ventilator, Missy put her own grief aside and walked back into the same PICU to help me through the fear of losing my son. Missy and I no longer talk every day, but the friendship formed through those times has shown me what it means to truly be a friend. 

Several years later when I was feeling very alone, I decided to join a mom's bible study at church. I vowed to myself that I was going to be real and authentic and talk through the joys and sorrow with real emotion and not gloss over the hard that comes in life. All these years later, I lead that bible study. Our only rule is to be authentic and share yourself both good and bad. Some of those ladies and I have been in fellowship together for more than 7 years. We are known to laugh so loud we disrupt the church office, but also to cry with one another when someone is struggling. There are always boxes of tissues for the hard days. We have loved each other well and if one of us is struggling, the others are there to support and hold them however they need.

As I have walked through this last year it has been gut wrenching at times. The same fear and isolation has crept back in. The same sense of dread as I plan my days around doctors' appointments and tests. The same bone deep exhaustion that comes from lack of sleep as you try and put aside the medical issues to rest. And the lack of regular connection because illness keeps you from engaging in life as you would like. Once again, I find myself learning which friends will be there through the hard times and which friends aren't cut out for the real that comes when life doesn't go as you hope and plan. It is heartbreaking at times, but I remember those lessons I learned all those years ago. I will continue to open my heart and love with all I am because the friends who are willing to stick it out through the tough days...the bonds that are formed when you walk through the storm together are the ones that matter. Those are the friends who put themselves aside to show up and offer you light and hope in the dark. They are the friends who change your heart and show you Christ like love. 

And so, while this season is hard, I know that through the darkness I will see the light and love of friends who are willing to put aside their own lives to make sure I know I am loved and will be okay and I am so grateful. 

Thank you for your continued prayers and love as I seek answers and healing.

Ali

Hoping for answers and relief

 What a crazy two weeks. We were so happy to have Mimi come visit and spend a week with us. She was able to watch Maddy ride multiple times, attend a horse show, spend Easter with us and give her best boy a big hug! It was so nice to have her here and to have someone to help me around the house as I continue to decline health wise. We didn't get many pictures, but we shared lots of time chatting, laughing, crying and sharing love and hugs. Depending on what the next week or two hold Mimi may be coming back again. We are also hoping I can get healthy enough to make our annual trip to the beach!

Maddy and Alex are both doing well. They are thriving and growing and that is my greatest source of joy right now. I love to watch them following their hearts, spending time with the people who love them and accomplish goals and dreams. 

This last few weeks has been a whirlwind of more testing and appointments for me as we get closer to finding answers and hopefully healing and a return to health and being able to live! After some testing this past week, we have ruled out the sphincter disorder that we thought might be the cause of my severe stomach pain and inability to eat. My mom learned of a rare disorder that closely matches my symptoms and experiences up to now. I have an appointment tomorrow morning with a vascular surgeon to have testing and try and rule this disorder in or out. While the surgery to correct this would be major with a long recovery, I am hoping we have finally found an answer and can start the road to healing. I am scheduled for surgery on Thursday to perform a thyroid lobectomy. The plan as of now is to remove the right lobe of my thyroid that contains the nodule. While I am in the OR they will send the removed lobe to Pathology to be sure there are no suspicious cells that were missed during biopsy. If all looks good, they will close, and I should be discharged hoe that same day. If the pathologist finds anything suspicious, they will remove the remainder of the thyroid and check labs to determine whether I need to be admitted for a night. 

Please pray for me this week as well as Bruce and the kids. This has been a hard season for all of us. We continue to be grateful for our faith which carries us through the hard times always keeping our sights set on eternity when our loving Father will wipe every tear away and there will be no more crying or pain. Thank you to our dear friends who continue to be there for us and check in. It is during the hardest of times that you learn who your true friends are. I am so very thankful for the people God has brought in our lives to walk beside us during the good times and the hard times. Thank you for loving our family during all the seasons of our life.

Ali

Same old, Same old

 I have updated because there really isn't much to say....

Alex is completely thriving at Dallas Baptist University. It brings me so much joy to see him really enjoying this stage of life! He has made such great friends, has connected with many of his professors and continues to enjoy student life. He is attending activities and making strong friendships, while also truly soaking in the experience of learning. I always knew he loved to learn and really dive into things, but this semester it is so apparent. He wants to ask hard questions, discuss philosophy and theology and really understand the work he is presented. He has found his footing and he is no longer calling to run things by me or asking me to help him with how to tackle assignments. When I talk to him now it is for him to tell me what he has learned or done with his friends. Every moment of this is such an unexpected gift. For so many years we lived hospital admission to admission always waiting for the next crisis, for people who haven't lived this complex life-threatening medical life I can't explain the stress and fear that underlies every moment, every activity and every decision. To see him excelling and having a "normal" life is so much more than I ever hoped or dreamed was possible. In true Alex style, he once again decided to apply for a living learning community for his housing next year. Following his application and interview he was once again accepted. So he will stay in the same area next year. 

Maddy Moo is also doing pretty well. This past few months we have seen a growth and maturity in her that is new. She is becoming more and more independent and really doing well in school, her therapies and of course her dancing and riding. Because of her disabilities school doesn't come super easy for her, but she is so determined and such a hard work that she overcomes so much. Her schedule keeps me hopping she has tutoring twice a week, auditory rehab weekly, ballet, tap and art along with riding three days a week and school and doctors appointments. We spend a lot of time on the road and it is fun for us to listen to music together or have conversations during this one on one time. We are gearing up for another horse show next week. Her and PD have such a special bond and I have loved to watch her find some assertiveness to really take charge. She continues to work on finding her voice and letting us know when something is bothering her physically or emotionally, but several times lately she has done just that. I love to see her personality come through at the barn and at dance as she feels so comfortable with the coaches, teachers, friends and volunteers who love her dearly and she trusts. She will never be as chatty and outgoing as Alex and I, but I love to see her engage and chat with the people she loves and trusts. 

The kids and I had to make a trip to Houston over Spring Break. Maddy is still having some health issues that we are trying to sort out and Alex needed to see the team that controls his research medication. Unfortunately, one of Maddy's appointments was not scheduled correctly and a few more doctors need to see the kids so we will head back over the summer for several more appointments and tests. We did complete a sleep study with Maddy, but I do not have results yet. She was a rockstar and did a great job keeping her anxiety in check while getting everything hooked up!

Thank you to everyone who has reached out to check on me or let me know they are thinking of me. I have had quite a few more appointments and more testing and we are working on coming up with answers and a treatment plan, but unfortunately it is not fast moving in the adult medical world. I will see my PCP and the ENT this week to determine if we will move forward with surgery to remove one half of my thyroid and I have some more testing scheduled as well. Thank you for continuing to pray for me as I am continuing to lose weight and struggle with nausea and pain.

Mimi is flying in this week to visit Alex, watch Maddy's horse show and spend Easter with us. We are excited to see her and can't wait to give her big hugs!

Thank you to everyone who continues to walk this journey with us. We are so grateful for friends and family who walk beside us through both joyful days and days that are a bit more of a struggle. I cannot imagine this life without so many who have blessed us with their love over the years. What an amazing gift!

Ali

A hard few weeks

 For much of the past 16 years I have openly and honestly shared the highs and lows of this amazing and often unchartered path that the Lord has set before us to walk. I have chosen to share both the fears and the blessings that have come as I navigate raising two medically fragile children. I have been candid as we walked through Bruce's colon cancer and when we have struggled through unemployment. But this last season has been a bit harder for me to share...Those who know me know I don't like to complain, I like to care for and love those around me and struggle to ask for help. But a dear friend told me many years ago that God places people in our lives to walk along with us and when we don't allow them to help us, we are robbing them of the joy and the call of helping that God has placed on their hearts.

So, all of that to say that I need to share a bit about the past few weeks. As most of you know, I have had some health challenges of my own over the past 18 months. What started as inflammatory arthritis (which was diagnosed as Rheumatoid Arthritis) led into the start of GI issues which initially we thought were medication related. As the nausea, loss of appetite and weight loss continued after making multiple medication changes, we began to do more testing which led to having my gallbladder removed in July. However, although the nausea subsided, I continued to have no appetite, lose weight and started to struggle with difficulties swallowing and feeling like food was getting stuck along with pretty significant pain after eating and drinking. For most of the last six months I have lived on soup and protein shakes and continued to try and find answers. As I continued to deteriorate, I sought out new doctors. In January I started with a new PCP and GI. My closest friends and family have been increasingly concerned and at times pushed me to seek further help when I wanted to just climb in the bed. My new PCP and his PA have been phenomenal have vowed to help me find answers and get back to living a life full of joy. Two weeks ago, my PA asked why no one had looked at my neck and throat area in all this time. And so, she sent me for an ultrasound of my Thyroid the following day. I was shocked when she called to let me know that they found a "highly suspicious" nodule on my thyroid that needed to be biopsied ASAP. I had that biopsy on February 23rd. It was a long hard week waiting on results, but I am so incredibly grateful that we got the news Friday that the nodule is benign. I have a few more tests to go through and then will likely have surgery to remove half of my thyroid in hopes that my swallowing will improve. My PA and GI also have some thoughts on the pain, and I am going through testing to try and get answers/relief. I have lost 41 pounds since all of this started and weigh less now than I did when I graduated college. It has been very hard for my family and closest friends to watch me struggle and walk through this. None more so than Maddy. For my husband and kids, I have always been their rock and the one who handles all the stress of life and helps them to remember to find the blessings and joy in our life. With me on the sideline's life has been a little shaky in their world. But as always, I can look at this period and find the good. I have seen my son mature and grow and reverse rolls with me these last few weeks. I will always treasure the messages he sent reminding me to lean on my faith and talk to him and not carry the weight alone. My closest friend has allowed me to be open and honest and cry when I needed to and push for answers when I wanted to give up. To have a friend you can be 100% authentic with is priceless. I have had friends who have walked this medical journey with me for years help me brainstorm and research and try and figure out where else to turn. And through it all I have leaned into my faith trusting that I will find answers and healing in God's time. 

Enough about me...

Alex continues to thrive at school and is really loving this time in his life. It has brought me so much joy to watch him finding good friends, enjoying his classes and plugging in in all different areas of school. As has always been his way he is not afraid to be himself and do what makes him happy even if his friends don't want to. When God created Alex, he made him to not care what others think and to march to his own beat fully confident in who he is. He has been this way since a very young age, and it is amazing to see. I marvel at his self-confidence and ability to choose his path without regard for what others think. We could all learn from him!

As I mentioned, Maddy has struggled the most with my health issues, but I am so grateful she has adults she can trust and be honest with. She has turned to her most trusted people and shared her fears. We have seen her grow and mature over this time. She is no longer my baby, and I am enjoying watching her take on more responsibility and independence. Maddy had a horse show last weekend. Leading up to it we weren't sure if she was going to compete or choose to sit this one out as she was having a hard time emotionally and we were seeing the fallout of that at the barn. Ultimately, she made the choice to focus on her relationship with her horse and becoming a better rider and make PD a better horse and not worry about placings or the "show". She did an incredible job as we watched PD try and do what she wanted and time after time Maddy showed her who was boss and PD started to respect her as the leader in their partnership. The success of that show led to two amazing rides Monday and Tuesday! On Thursday Maddy underwent some oral surgery as she had some baby teeth that did not want to budge! She had 7 teeth pulled and was a rock star! We still went to the barn on Friday, but she did not ride as she was still not 100% after anesthesia. I was extremely proud of her for making a mature decision and asking Tammi if they could just do groundwork since she wasn't feeling great and she didn't want to take steps backwards with PD. As I said my sassy little firecracker is growing up!

Please continue for answers and healing for me and for the kids during the times. There are not enough words to thank my family and friends who have been there day in and day out through this rough time and to those of you who have checked in and encouraged us during this time. I am blessed that God has filled my life with amazing people who have chosen to be a part of our journey. My life is better because of the people who walk alongside me.

Ali

Much the same

 Not much has happened over the past few weeks. Everyone is back in the swing of regular life.  

Alex is loving his classes and professors this semester. He is not calling or coming home as often as he was last semester. I am loving watching him spread his wings and continue to become more independent and comfortable at school. His intended major is Forensic Psychology. He has a class in his major this semester: Criminology. He is loving every minute of it. This week he went on a trip to the Dallas Fusion center to tour their facility that provides real time intel to officers in the field and also monitors for potential terrorist activity in the DFW area. Alex connected with the chief and was able to ask about the logistics of working in Forensic Psychology with a disability. 

Maddy is hard at work in school, dance and at the barn. She is back to riding her beloved PD and continues to enjoy the challenge of learning new things. She loves to be at the barn and always asks for more barn chores to complete. I love that her passion is not just for riding, but for all areas of horsemanship. She never shies away from the hard work involved in owning and training horses. Watching her live her dream and grow is so amazing. 

I am continuing to struggle health wise. I don't have any answers and am just holding on to hope and trusting that answers are forth coming, and I can get back to living life. In the meantime, I would appreciate continued prayers for answers and healing. 

Ali

Quick Update

 Wanted to get out a quick update on everyone...

Alex has started his second semester and is loving life at DBU even more than first semester. Having a successful semester under his belt has given him some confidence in his ability to thrive in this academic setting. He loves all of his classes and professors (Praise God) and is happy to be back living with his best friends. I hardly hear from him during the week, and it is such sweet silence as I know it means he is spreading his wings and fining his way without needing me as his constant partner. he is taking a full course load, has accepted a volunteer position mentoring high school students and has applied once again for a unique housing arrangement for next year. The housing is very similar to Stone House (where he lives currently) but is for students who have completed their freshman year. He has loved the living learning community and building close relationships as they live together, pray together and learn together. I still have to pinch myself sometimes that Alex is living this life that seemed impossible just a few short years ago. God is so good, and I love watching him work in and through my son.

When your son is in college, a happy selfie is the only pic you have!

After the LONGEST Christmas break ever, Maddy is back in school. Her classmates started back the second week of January while we were at Chisholm Challenge. Then the following week we had some snow and water issues, so this week was her first week back since she got out on December 13th!!! She was a little nervous but had two good days and was happy to see her friends. She is also back in Auditory Rehab and Dance and Art, so our crazy schedule is back in full swing. The biggest news is from the barn. After just shy of 4 months, Maddy was able to get back to riding her beloved PD this past week. Maddy has been involved in hippotherapy and/or equine therapy for over 4 years. In that time, she has ridden 18 horses!!! And while she has learned something from each and every one, she has never connected with a horse the way she has with PD. While she has diligently cared for PD over the past few months, she missed riding her. The smiles this week have been big and plentiful. We are incredibly grateful that we have multiple horses in our program so Maddy always had a horse to ride, but there is something special when she rides "her" horse.

As for me things are much the same. Unfortunately trying to find answers and treatments in the medical world is often a slow process and I am just trying to keep myself in a safe state and out of the hospital as we continue to try and find a way for me to once again eat normal food in normal quantities. Thank you to those who have checked in and offered help. It is very much noticed and appreciated. 

As for Bruce...he is working and playing soccer and trying to figure out how to pick up the slack with me not able to do as much as usual.

I ask for prayers for Alex to continue to thrive and for his housing to work out for next year; for Maddy and her anxiety as she is scheduled to get braces on Tuesday and is pretty nervous; and for me to find answers and healing. I really miss food!

Thank you for being a part of our story and blessing our lives with your love and friendship!

Ali

An Update on...Me!

 I don't usually say much about myself because I prefer to focus on the kids and all the amazing ways they bless and inspire me and those around them. But sometimes life demands that you take a moment to share about yourself.

Last March as most people know I started having some GI issues that culminated in my gallbladder being removed in July. For a few weeks following surgery, I thought life was going to go back to normal. Unfortunately, some new GI symptoms cropped up that have been pretty hard to manage. I have only been able to eat small amounts of foods each day and have lost close to 40 pounds at this point. Over the last several weeks things continue to deteriorate, and I started having pretty significant pain on my right side. A few days ago, it became clear I could not keep going as I was so with some "urging" from family and a close friend I went to the ER on Thursday. I was admitted and have spent the past several days getting some testing and a procedure to try and figure out exactly what is going on and how to move forward. I came home today with some new medications and some new questions. The plan is to give the new meds and procedure a few weeks to see if they help and continue to have some more testing outpatient. 

I am praying and believing this is just a bump in the road and I am going to be back to eating and enjoying my amazing life soon. I appreciate anyone that would join me in praying for answers and healing.

Ali

A Champion Again

 We are only 11 days into the new year and already Maddy has competed in her first horse show! This show is very different and a bit special. Most of the shows that we compete in are Breed association shows that choose to include some EWD (Equestrians with Disabilities) and Veteran Classes. This show is a show that is only for EWD riders and veterans. We moved the horses in on Monday and Maddy Moo competed Tuesday and Wednesday. She rode beautifully and when all was said and done, she came home with three blue ribbons, three belt buckles and a medal for being the hi point champion in her division (Walk Independent). While I am always happy for her when she wins it is mostly because it is a reward the incredibly hard work she puts in at the barn week after week. But this week there were several other accomplishments that truly were the Champion moments. 

Our past several weeks at the barn have been a little rough so our primary goal for this show was for her to have a positive attitude all week. Not only was her attitude exceptional, but this was the first show ever where she didn't shed any tears. She usually cries because she is so nervous, so this was a huge accomplishment and a sign that she is growing and maturing. 

But even better than that...this show places an emphasis on sportsmanship, team unity and treating everyone with respect and kindness. because that is a focus they award two champion center awards at the end of the show to the two teams that most displayed these characteristics. As a new center, we won the Reserve Champion Center Award out of 16 centers competing. This is so special as we try to shine a light and honor God in all we say and do as a team. To be recognized for being a team that shows excellent sportsmanship is exactly what we want to be known for. It was the perfect culmination of an amazing week.

These accolades don't happen without a lot of hard work and dedication and support. There are so many people who are a part...

First and foremost, Tammi for everything she does for Maddy and her teammates. She pours her heart and soul into her riders. She dedicates so much time, effort and love to this program and is an extremely talented coach on top of it all. I cannot imagine our lives without this special woman in it.

To the other coaches and volunteers: Sarah, Savannah, Anna, Haley, Judy, Jess, Angie and Sammie- your love and kindness and all you do to make these riders feel special never goes unnoticed. You give of your time, your love and your special gifts to make this program better. THANK YOU!

To Jeannie and Dawn- Thank you for opening your heart and home to us. Without you opening your doors there would be no Living Hope. But not only did you give us a beautiful place to call home, but you are a constant source of encouragement and knowledge. I am so grateful for all the ways you pour into Moo and show her what it means to be an equestrian and a trainer. 

To Joy- my friend there are not enough words to say what you mean to us. Sharing your girls with us was the ultimate gift. Without a doubt PD is Maddy's heart horse and we are so grateful for her. But beyond the horses you travel to our shows, cheer us on, and continue to give to the program. You are a blessing my friend. 

And last but not least, to Maddy's teammates and the other families- Thank you for all the ways you encourage and support Maddy. I cannot imagine a greater gift as a mom than to see your child thrive because they know they are loved. I watched this week as Maddy was comfortable and herself in a way we rarely see outside our home. She chatted, she laughed, she played, she explored. She never once clung to me. You all know what a huge change this is from a year ago. Thank you for the gift of a barn family that loves my child and wants her to succeed and can be a nervous wreck in the stands with me as we all want to see our riders succeed! How very lucky we are to be a team.

God is so good. I am so grateful to live this life and see miracles and blessings in front of me each day.

Ali