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