Myhre Clinic - Boston Update

Hello Friends and Family, Our family recently returned from our second trip to Boston, for Mila's checkups. We are so thankful to all of you for your prayers during our time there. It was hard. Harder immediately after, in reality, then while we were there being seen. By God's grace, Boston looks to be something we will be doing frequently, and this trip we wanted our whole family to come so that we can find enjoyment on these trips, not just sorrow, stress and anxiety. We are very grateful for Frank and Gloria (Michelle's mom and dad) for joining us, treating us and watching the other kids while Michelle and I were with Mila. Since we wanted to make this detour illicit good memories we spent 3 nights in Cape Cod. The kids loved the beach. The ferry rides and backdrop were beautiful and brought a quaint picturesque memory to this trip. The home we stayed in was one from a novel that had as much character and history inside as did the towns we visited outside. A special thanks to Jake, who invited us into his home and served us with joyful hospitality. He is a new blessing that came from this Myhre adventure. For the past 2 years (since our last Boston trip) we have enjoyed every second we can with Mila. She is our full of joy, curly haired, 3ft, 29 pound, loads of character, loud, nasal voiced little baby girl. There are starting to be more and more glimpses into her being a child with Myhre Syndrome (when she stands in the shadow of a toddler her age or we hear the vocabulary of someone half her age more clearly, but to us and those who know her she is just our precious Mila. Myhre and all it entails is always there, just subdued by our busy lives and desire to live in the present moment. A year of bad news outside our home (COVID, Politics, etc.), we felt safe and joyful inside, which is where we sometimes forget the trouble of the syndrome. We were quickly reminded on this trip. We always told ourselves, convincingly, that she is fine... today. With all her Doctor's here (Dallas) she does appear that way, just fine. All her specialists compare her to a norm, a bell curve or a quotient that tell her (and allude to us) she is in a range. The scary truth with a degenerative disease is that a decrease on the scale of norm means a regression. This was the case in August of 2020 when her local Cardiologist told us she had mild Aortic Stenosis (a narrowing of the Aorta). This is common in Myhre. It was also made abundantly clear at her checkups in Boston and more scans are required in the following months. Michelle is the most amazing woman in the world. She is so in tune with Mila, her care and feelings that every physician commented on it. She knew every crazy medical term or abbreviation and also mentioned some that puzzled the doctors. She is the model parent and an inspiration for me. She is unwaveringly strong, full of faith and joy amongst this trial. However; this trip I sensed an anxiousness in her, more so than me. For me, I was still living in the bliss of her being "fine" today. That moniker is no longer something we will hold because fine in Myhre may mean something all together worse. This syndrome sucks. It is scary. I fear for my daughter and her future and find myself full of questions that I am bringing to the Lord from both a place of trust and confusion. I have always told others that I trust God's plan for Mila. I would share when asked, that there is a greater purpose with her life and that we may not understand what that is, this side of Glory, but I trust God's plan for her is good. While I stand firmly in this truth, my earthly desire is for this cup to pass from us, more specifically from her. I picture Mila laughing along with the Audiologist while they test her hearing and my heart sinks knowing that while she plays along we will soon learn she needs hearing aids because her hearing is deteriorating. I can see her laying with Michelle as they scope her nose so they can confirm she has nodules on her vocal cords and a new diagnosis of vocal cord dysfunction, that may be causing her throat/breathing concerns. I can feel her in my lap as the cardiologist confirms the cardiovascular problems in other kids like Mila. Lastly, I can smell her hair and hear her raspy inner monologue as the geneticist reminds us of a road that is riddled with tests, troubles, tubes, trials and trauma... all of which may threaten a joyful life. The life we enjoy in our bliss of forgetting. Yes, all things heal with time but my cry is still. "Please Lord let this cup pass." As I reflect on all this I can't stop thinking about the way Mila was visibly shaking as she sat on my shoulders. As Michelle and I did the stupid COVID screening, Mila knew she was about to be seen. She is no fool. She is no stranger to this. Her shaking was not fear, it was remembrance of all the other things she had experienced. The following Sunday at church, Michelle and I each melted down during different worship songs that brought sorrow to our return. I asked Michelle if she was joyful or sad and when I learned her sad emotion matched mine I knew it was because of that fright Mila had entered that Hospital. Mila's mom and I do not want our angel to feel the way she did ever again but we lament because that may be her story. Dear Lord, I pray this cup passes." But not my will but yours be done... So although it is tough and we are scared, wisdom in our faith tells us that we are to be thankful and we are... - I'm thankful for Mila. She is the bravest and most cheerful little girl. Who although she shivered with fright at the sight of her doctors. She smiles with glee at those who engaged her. - I am thankful for Michelle. She is the most incredible woman in the world. She is always patient, endlessly loving, consistently intentional, she bleeds grace and is wise beyond words. She has been my rock through this and has even made the thought of this future exciting, because we will go through this journey together. - I am thankful for our other children. They will learn and grow strong through this and because of it they will learn to overcome trial, be generous to others, empathize, to defend the weak and that we are all made in God's image and he does not make a mistake. - I am thankful for the foundation. If we did not find Mila's diagnosis early we would not have seen the love of others, the hard work of people with a personal mission and the barriers that a disease can overcome. - I am thankful for provision. This has been costly, in time and money, both of which have been a gift we do not take for granted. Returning from Boston and relearning the devastating nature of this syndrome Michelle and I were anxious, almost angry but today we are growing thankful. The Lord has put numerous blessings in our life and when the veil of sadness lifts we can clearly see what he has provided. When you look at the list above all these things are good. Because of the greatest thing we are thankful for, our faith in Jesus, we believe that all good things come from him. So, We are most thankful for Jesus our Lord and Savior for all we have, especially Mila and even Myhre. PLEASE listen to this podcast from Michelle about our experience. This is all of it and such a wonderfully bold expression. Podcasts — Myhre Syndrome Foundation We love you all!