"Images of Strength and Hope"... Preserving your story, sharing your strength, giving others hope. This is the new name and mission statement of the program that I have created to serve special needs families. Through this program, families who have a special needs child or a child struggling with a chronic or terminal illness are empowered and blessed through the sharing of their stories in both the written word and photography. These families are empowered knowing that their stories of day-to-day struggle, survival, gratitude, and love have the power to bless the lives of others.
There is no better example of this than the story of Pat Lang, a single mom of three, a son named Wyatt and two daughters, Mikalyah and Maddie. Both girls were adopted from China. In 2001, 15 month old Maddie was diagnosed with a rare degenerative genetic disease called Metachromaticleukodystrophy (MLD). MLD is an extremely rare autoimmune disease affecting the central and peripheral nervous system and has no cure.
The onset of the disease can take effect at any time in a person's life who is genetically predisposed to the disorder. Prior to her diagnosis, Maddie was a vivacious toddler who loved to sing, dance, and laugh! She then starting showing symptoms that doctors struggled to diagnose: tremors in her hands and difficulty walking. Tests were ordered, results were studied, but no answers were found. Since, Maddie was adopted from China, there were also no medical records or family history available to provide any clues as to what was happening in this precious little girl. With the strength of a mother lion, Pat did not accept the lack of answers and demanded that more be done. Finally, a young resident walked into the room, spent two hours with the family studying the previous tests and reports and offered one final test. Dr. Nancy Bass from the University of Minnesota had seen the disease only once before. This final test unlocked the mystery of Maddie's symptoms and she was diagnosed with MLD. Living in Ohio at that time, Pat sold everything, left everyone and everything she knew and moved with her girls to Minnesota and lived in the Ronald McDonald House in Minneapolis to be close to the experts who knew Maddie's disease the best. During this time period, Maddie had two bone marrow transplants and continued testing. This was the beginning of a journey of so many challenges that, at the time, seemed insurmountable. She can no longer walk or speak. She can no longer breathe or eat on her own. Her breathing is supported by a ventilator and 100% of her nutrition comes from a feeding tube. She has type 1 diabetes, has had spinal fusion surgery, wears leg and hand braces at night, and utilizes a vibrating best machine to keep her lungs free from infection. Maddie has 23 plus doctors and medical professionals involved in her care. On a good day, it takes over a half hour to prepare all of the necessary equipment and medications just to simply leave the house. Maddie requires in-home nursing care 24/7.
Almost 19 years since being diagnosed with MLD, Maddie has survived longer than any other child in the world with MLD. Doctors attribute this to her passion and zest for life. Even though she cannot express it vocally, Maddie is exuberant with hope and strength. She simply loves life and no matter what physical struggle is present in her life, she does not let it overpower her joy. She has chosen joy over sorrow and this kind of hope influences everyone who crosses her path.
Even though she cannot speak, she communicates by blinking. She has a laugh and smile that are contagious and her presence fills up a room with her amazing spirit. Her silent laughter has brought those around her to tears of joy and sometimes causes her pulse oximeter to go off! Cognitively, she is like every other 20 year old young woman. She loves fashion and color - there isn't a moment her nails aren't done or she isn't wearing her favorite jewelry. She comes to life whenever she listens to music and she has a sense of humor that will make you laugh! And did I mention, she loves handsome men?! This explains the "man wall" that is in the center of her living room. Pat and the girls are frequent visitors of Fire Station 8 in St. Paul where Maddie is able to spend time with men in uniform. They bring joy to her, but, oh, what incredible joy she brings to them! As you can see, she comes to life with the same interests and passions that any 20 year old girl might have. As her mom says, "she is after all, just a normal young woman in abnormal circumstances."
Pat fights for her daughters' lives every single day. She has fought for coverage of medicines and other natural remedies that benefit Maddie. She has fought insurance companies in order to get approval for in-home care - without which she would be homebound and would not be able to have a job to support her family. Without the amazing nurses who have since become family to her, Maddie, and Mikaylah, her life would be shrouded by despair. The amazing nurses that are, or have been a part of Maddie's journey are, and will always be a part of their family. Nurses have allowed her family to live in a safe and positive environment. They can be silly, play with their dog, feel the sun on their faces, bake cookies or even put pictures of handsome young men on their wall. They are allowed to have a sense of normalcy despite the abnormal circumstances of their living conditions. She takes nothing for granted and her generous heart is full of giving. The more that she may need in this life due to her circumstances, God has enabled her to give to others a hundredfold in return. "We didn't ask for or expect this kind of life, but we are determined to live it to the fullest."
Reflecting on the journey of their family's life, Pat sees God's hand at work in so many ways. From Dr. Bass walking into that room, to organizations like HopeKids MN that have blessed her entire family, to donations of supplies that seem to show up right when she needs them, to the simple joys that bless Maddie like her love for music, passion for others, and zest for life. For all of things, Pat wants others to receive hope. She wants others to be able to recognize that whatever might be happening in their lives, God can work through it and produce amazing things. She wants others to see that despite weaknesses, discouragement, or trials, things that to the world are insurmountable, we can rise above through the hope that only comes from God.
In order to give praise and thanks for these blessings, Pat organized a get together celebrating "Maddie's Mob" at her local park this past August. It was an evening of music, laughter, and cake pops for all of the little ones. What an amazing testament of love and friendship this evening was and I am grateful to have been a part of it. Maddie's nurses, past and present were there, friends, neighbors, her doctor - all there to celebrate Maddie and the privilege of knowing her. Many others could not attend, but were talked about and there in spirit. It was simply fellowship - in love and celebration and music.
The gift that Pat and her family gives to all of those in their lives can be summed up in this passage: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." 2 Corinthians 1:3-4